62783 WORLD REPORT ON DISABILITY WHO Library Cataloguing-in-Publication Data World report on disability 2011. 1.Disabled persons - statistics and numerical data. 2.Disabled persons - rehabilitation. 3.Delivery of health care. 4.Disabled children. 5.Education, Special. 6.Employment, Supported. 7.Health policy. I.World Health Organization. ISBN 978 92 4 156418 2 (NLM classification: HV 1553) ISBN 978 92 4 068521 5 (PDF) ISBN 978 92 4 068636 6 (ePUB) ISBN 978 92 4 068637 3 (Daisy) © World Health Organization 2011 All rights reserved. Publications of the World Health Organization are available on the WHO web site (www.who.int) or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who.int). 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Printed in Malta Contents Foreword ix Preface xi Acknowledgements xiii List of contributors xv Introduction xxi Understanding disability 1 What is disability? 3 Environment 4 The diversity of disability 7 Prevention 8 Disability and human rights 9 Disability and development 10 Disability – a global picture 19 Measuring disability 21 Prevalence of disability – difficulties in functioning 24 Country-reported disability prevalence 25 Global estimates of disability prevalence 25 Health conditions 32 Trends in health conditions associated with disability 32 Demographics 34 Older persons 34 Children 36 The environment 37 Health conditions are affected by environmental factors 37 Disability and poverty 39 Developed countries 39 Developing countries 39 Needs for services and assistance 40 iii Costs of disability 42 Direct costs of disability 43 Indirect costs 44 Conclusion and recommendations 44 Adopt the ICF 45 Improve national disability statistics 45 Improve the comparability of data 46 Develop appropriate tools and fill the research gaps 46 General health care 55 Understanding the health of people with disabilities 57 Primary health conditions 57 Risk of developing secondary conditions 58 Risk of developing co-morbid conditions 59 Greater vulnerability to age-related conditions 59 Increased rates of health risk behaviours 59 Greater risk of being exposed to violence 59 Higher risk of unintentional injury 60 Higher risk of premature death 60 Needs and unmet needs 60 Addressing barriers to health care 62 Reforming policy and legislation 65 Addressing barriers to financing and affordability 66 Addressing barriers to service delivery 70 Addressing human resource barriers 77 Filling gaps in data and research 80 Conclusion and recommendations 81 Policy and legislation 82 Financing and affordability 82 Service delivery 82 Human resources 83 Data and research 83 Rehabilitation 93 Understanding rehabilitation 95 Rehabilitation measures and outcomes 95 Rehabilitation medicine 97 Therapy 100 Assistive technologies 101 Rehabilitation settings 101 Needs and unmet needs 102 Addressing barriers to rehabilitation 103 Reforming policies, laws, and delivery systems 104 National rehabilitation plans and improved collaboration 105 Developing funding mechanisms for rehabilitation 106 iv Increasing human resources for rehabilitation 108 Expanding education and training 110 Training existing health-care personnel in rehabilitation 111 Building training capacity 112 Curricula content 112 Recruiting and retaining rehabilitation personnel 112 Expanding and decentralizing service delivery 114 Coordinated multidisciplinary rehabilitation 114 Community-delivered services 114 Increasing the use and affordability of technology 117 Assistive devices 117 Telerehabilitation 118 Expanding research and evidence-based practice 119 Information and good practice guidelines 120 Research, data, and information 121 Conclusion and recommendations 121 Policies and regulatory mechanisms 122 Financing 122 Human resources 122 Service delivery 122 Technology 123 Research and evidence-based practic 123 Assistance and support 135 Understanding assistance and support 138 When are assistance and support required? 139 Needs and unmet needs 139 Social and demographic factors affecting demand and supply 140 Consequences for caregivers of unmet need for formal support services 141 Provision of assistance and support 142 Barriers to assistance and support 144 Lack of funding 144 Lack of adequate human resources 144 Inappropriate policies and institutional frameworks 145 Inadequate and unresponsive services 145 Poor service coordination 145 Awareness, attitudes, and abuse 147 Addressing the barriers to assistance and support 147 Achieving successful deinstitutionalization 147 Creating a framework for commissioning effective support services 149 Funding services 149 Assessing individual needs 150 Regulating providers 151 Supporting public-private-voluntary services 151 v Coordinating flexible service provision 152 Building capacity of caregivers and service users 155 Developing community-based rehabilitation and community home-based care 156 Including assistance and support in disability policies and action plans 156 Conclusion and recommendations 157 Support people to live and participate in the community 157 Foster development of the support services infrastructure 157 Ensure maximum consumer choice and control 158 Support families as assistance and support providers 158 Step up training and capacity building 158 Improve the quality of services 159 Enabling environments 167 Understanding access to physical and information environments 170 Addressing the barriers in buildings and roads 172 Developing effective policies 173 Improving standards 173 Enforcing laws and regulations 175 The lead agency 175 Monitoring 175 Education and campaigning 176 Adopting universal design 177 Addressing the barriers in public transportation 178 Improving policies 179 Providing special transport services and accessible taxis 179 Universal design and removing physical barriers 180 Assuring continuity in the travel chain 182 Improving education and training 183 Barriers to information and communication 183 Inaccessibility 184 Lack of regulation 185 Cost 185 Pace of technological change 186 Addressing the barriers to information and technology 186 Legislation and legal action 186 Standards 188 Policy and programmes 189 Procurement 190 Universal design 191 Action by industry 191 Role of nongovernmental organizations 192 vi Conclusion and recommendations 193 Across domains of the environment 193 Public accommodations – building and roads 194 Transportation 194 Accessible information and communication 195 Education 203 Educational participation and children with disability 206 Understanding education and disability 209 Approaches to educating children with disabilities 210 Outcomes 211 Barriers to education for children with disabilities 212 System-wide problems 212 School problems 215 Addressing barriers to education 216 System-wide interventions 217 School interventions 220 The role of communities, families, disabled people, and children with disabilities 223 Conclusion and recommendations 225 Formulate clear policies and improve data and information 226 Adopt strategies to promote inclusion 226 Provide specialist services, where necessary 227 Support participation 227 Work and employment 233 Understanding labour markets 236 Participation in the labour market 236 Employment rates 237 Types of employment 238 Wages 239 Barriers to entering the labour market 239 Lack of access 239 Misconceptions about disability 240 Discrimination 240 Overprotection in labour laws 240 Addressing the barriers to work and employment 240 Laws and regulations 240 Tailored interventions 241 Vocational rehabilitation and training 245 Self-employment and microfinance 247 Social protection 248 Working to change attitudes 249 vii Conclusion and recommendations 250 Governments 251 Employers 251 Other organizations: NGOs including disabled people’s organizations, microfinance institutions, and trade unions 252 The way forward: recommendations 259 Disability: a global concern 261 What do we know about people with disabilities? 261 What are the disabling barriers? 262 How are the lives of people with disabilities affected? 263 Recommendations 263 Recommendation 1: Enable access to all mainstream policies, systems and services 264 Recommendation 2: Invest in specific programmes and services for people with disabilities 265 Recommendation 3: Adopt a national disability strategy and plan of action 265 Recommendation 4: Involve people with disabilities 265 Recommendation 5: Improve human resource capacity 266 Recommendation 6: Provide adequate funding and improve affordability 266 Recommendation 7: Increase public awareness and understanding of disability 267 Recommendation 8: Improve disability data collection 267 Recommendation 9: Strengthen and support research on disability 267 Conclusion 268 Translating recommendations into action 268 Technical appendix A 271 Technical appendix B 281 Technical appendix C 287 Technical appendix D 295 Technical appendix E 299 Glossary 301 Index 311 viii Foreword Disability need not be an obstacle to success. I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a prominent career in astrophysics and a happy family life. Reading the World report on disability, I find much of relevance to my own experience. I have benefitted from access to first class medical care. I rely on a team of personal assistants who make it possible for me to live and work in comfort and dignity. My house and my workplace have been made accessible for me. Computer experts have supported me with an assisted communication system and a speech synthesizer which allow me to compose lectures and papers, and to commu- nicate with different audiences. But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with dis- abilities in the world have an extremely difficult time with everyday survival, let alone productive employment and personal fulfilment. I welcome this first World report on disability. This report makes a major contribution to our understanding of disability and its impact on individuals and society. It highlights the different barriers that people with disabilities face – attitudinal, physical, and financial. Addressing these barriers is within our reach. In fact we have a moral duty to remove the barriers to participation, and to invest sufficient fund- ing and expertise to unlock the vast potential of people with disabilities. Governments throughout the world can no longer overlook the hundreds of millions of people with disabilities who are denied access to health, rehabilitation, support, education and employment, and never get the chance to shine. The report makes recommendations for action at the local, national and international levels. It will thus be an invaluable tool for policy-makers, researchers, practitioners, advocates and vol- unteers involved in disability. It is my hope that, beginning with the Convention on the Rights of Persons with Disabilities, and now with the publication of the World report on disability, this century will mark a turning point for inclusion of people with disabilities in the lives of their societies. Professor Stephen W Hawking ix Preface More than one billion people in the world live with some form of disability, of whom nearly 200 million experience considerable difficulties in functioning. In the years ahead, disability will be an even greater concern because its prevalence is on the rise. This is due to ageing populations and the higher risk of disability in older people as well as the global increase in chronic health conditions such as diabetes, cardiovascular disease, cancer and mental health disorders. Across the world, people with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities. This is partly because people with disabilities experience barriers in accessing services that many of us have long taken for granted, including health, education, employment, and transport as well as information. These difficulties are exacerbated in less advantaged communities. To achieve the long-lasting, vastly better development prospects that lie at the heart of the 2015 Millennium Development Goals and beyond, we must empower people living with disabilities and remove the barriers which prevent them participating in their communities; getting a quality edu- cation, finding decent work, and having their voices heard. As a result, the World Health Organization and the World Bank Group have jointly produced this World Report on Disability to provide the evidence for innovative policies and programmes that can improve the lives of people with disabilities, and facilitate implementation of the United Nations Convention on the Rights of Persons with Disabilities, which came into force in May 2008. This landmark international treaty reinforced our understanding of disability as a human rights and development priority. The World Report on Disability suggests steps for all stakeholders – including governments, civil society organizations and disabled people’s organizations – to create enabling environments, develop rehabilitation and support services, ensure adequate social protection, create inclusive policies and programmes, and enforce new and existing standards and legislation, to the benefit of people with disabilities and the wider community. People with disabilities should be central to these endeavors. Our driving vision is of an inclusive world in which we are all able to live a life of health, com- fort, and dignity. We invite you to use the evidence in this report to help this vision become a reality. Dr Margaret Chan Mr Robert B Zoellick Director-General President World Health Organization World Bank Group xi Acknowledgements The World Health Organization and the World Bank would like to thank the more than 370 editors, contributors, regional consultation partici- pants, and peer reviewers to this Report from 74 countries around the world. Acknowledgement is also due to the report advisors and editors, WHO regional advisors, and World Bank and WHO staff for offering their support and guidance. Without their dedication, support, and expertise this Report would not have been possible. The Report also benefited from the efforts of many other people, in par- ticular, Tony Kahane and Bruce Ross-Larson who edited the text of the main report, and Angela Burton who developed the alternative text and assisted with the references. Natalie Jessup, Alana Officer, Sashka Posarac and Tom Shakespeare who prepared the final text for the summary and Bruce Ross- Larson who edited the summary report. Thanks are also due to the following: Jerome Bickenbach, Noriko Saito Fort, Szilvia Geyh, Katherine Marcello, Karen Peffley, Catherine Sykes, and Bliss Temple for technical support on the development of the Report; Somnath Chatterji, Nirmala Naidoo, Brandon Vick, and Emese Verdes for analysis and interpretation of the World Health Survey; Colin Mathers and Rene Levalee for the analysis of the Global Burden of Disease study; and to Nenad Kostanjsek and Rosalba Lembo for the compilation and presentation of the country-reported disability data. The Report ben- efited from the work of Chris Black, Jean-Marc Glinz, Steven Lauwers, Jazz Shaban, Laura Sminkey, and Jelica Vesic for media and communica- tion; James Rainbird for proofreading and Liza Furnival for indexing; Sophie Guetaneh Aguettant and Susan Hobbs for graphic design; Omar Vulpinari, Alizée Freudenthal and Gustavo Millon at Fabrica for crea- tive direction, art direction and photographs of cover design and images for chapter title pages; Pascale Broisin and Frédérique Robin-Wahlin for coordinating the printing; Tushita Bosonet for her assistance with the cover; Maryanne Diamond, Lex Grandia, Penny Hartin for feedback on the accessibility of the Report; Melanie Lauckner for the production of the Report in alternative formats; and Rachel Mcleod-Mackenzie for her administrative support and for coordinating the production process. xiii World report on disability For assistance in recruiting narrative contributors, thanks go to the Belize Council for the Visually Impaired, Shanta Everington, Fiona Hale, Sally Hartley, Julian Hughes, Tarik Jasarevic, Natalie Jessup, Sofija Korac, Ingrid Lewis, Hamad Lubwama, Rosamond Madden, Margie Peden, Diane Richler, Denise Roza, Noriko Saito Fort, and Moosa Salie. The World Health Organization and the World Bank also wish to thank the following for their generous financial support for the development, trans- lation, and publication of the Report: the Governments of Australia, Finland, Italy, New Zealand, Norway, Sweden, and the United Kingdom of Great Britain and Northern Ireland; CBM International; the Japan International Cooperation Agency; and the multidonor trust fund, the Global Partnership on Disability and Development. xiv Contributors Editorial guidance Editorial Committee Sally Hartley, Venus Ilagan, Rosamond Madden, Alana Officer, Aleksandra Posarac, Katherine Seelman, Tom Shakespeare, Sándor Sipos, Mark Swanson, Maya Thomas, Zhuoying Qiu. Executive Editors Alana Officer (WHO), Aleksandra Posarac (World Bank). Technical Editors Tony Kahane, Bruce Ross-Larson. Advisory Committee Chair of Advisory Committee: Ala Din Abdul Sahib Alwan. Advisory Committee: Amadaou Bagayoko, Arup Banerji, Philip Craven, Mariam Doumiba, Ariel Fiszbein, Sepp Heim, Etienne Krug, Brenda Myers, Kicki Nordström, Qian Tang, Mired bin Raad, José Manuel Salazar- Xirinachs, Sha Zukang, Kit Sinclair, Urbano Stenta, Gerold Stucki, Tang Xiaoquan, Edwin Trevathan, Johannes Trimmel. Contributors to individual chapters Introduction Contributors: Alana Officer, Tom Shakespeare. Chapter 1: Understanding disability Contributors: Jerome Bickenbach, Theresia Degener, John Melvin, Gerard Quinn, Aleksandra Posarac, Marianne Schulze, Tom Shakespeare, Nicholas Watson. Boxes: Jerome Bickenbach (1.1), Alana Officer (1.2), Aleksandra Posarac, Tom Shakespeare (1.3), Marianne Schulze (1.4), Natalie Jessup, Chapal Khasnabis (1.5). xv World report on disability Chapter 2: Disability – a global picture Contributors: Gary Albrecht, Kidist Bartolomeos, Somnath Chatterji, Maryanne Diamond, Eric Emerson, Glen Fujiura, Oye Gureje, Soewarta Kosen, Nenad Kostanjsek, Mitchell Loeb, Jennifer Madans, Rosamond Madden, Maria Martinho, Colin Mathers, Sophie Mitra, Daniel Mont, Alana Officer, Trevor Parmenter, Margie Peden, Aleksandra Posarac, Michael Powers, Patricia Soliz, Tami Toroyan, Bedirhan Üstün, Brandon Vick, Xingyang Wen. Boxes: Gerry Brady, Gillian Roche (2.1), Mitchell Loeb, Jennifer Madans (2.2), Thomas Calvot, Jean Pierre Delomier (2.3), Matilde Leonardi, Jose Luis Ayuso-Mateos (2.4), Xingyang Wen, Rosamond Madden (2.5). Chapter 3: General health care Contributors: Fabricio Balcazar, Karl Blanchet, Alarcos Cieza, Eva Esteban, Michele Foster, Lisa Iezzoni, Jennifer Jelsma, Natalie Jessup, Robert Kohn, Nicholas Lennox, Sue Lukersmith, Michael Marge, Suzanne McDermott, Silvia Neubert, Alana Officer, Mark Swanson, Miriam Taylor, Bliss Temple, Margaret Turk, Brandon Vick. Boxes: Sue Lukersmith (3.1), Liz Sayce (3.2), Jodi Morris, Taghi Yasamy, Natalie Drew (3.3), Paola Ayora, Nora Groce, Lawrence Kaplan (3.4), Sunil Deepak, Bliss Temple (3.5), Tom Shakespeare (3.6). Chapter 4: Rehabilitation Contributors: Paul Ackerman, Shaya Asindua, Maurice Blouin, Debra Cameron, Kylie Clode, Lynn Cockburn, Antonio Eduardo DiNanno, Timothy Elliott, Harry Finkenflugel, Neeru Gupta, Sally Hartley, Pamela Henry, Kate Hopman, Natalie Jessup, Alan Jette, Michel Landry, Chris Lavy, Sue Lukersmith, Mary Matteliano, John Melvin, Vibhuti Nandoskar, Alana Officer, Rhoda Okin, Penny Parnes, Wesley Pryor, Geoffrey Reed, Jorge Santiago Rosetto, Grisel Roulet, Marcia Scherer, William Spaulding, John Stone, Catherine Sykes, Bliss Temple, Travis Threats, Maluta Tshivhase, Daniel Wong, Lucy Wong, Karen Yoshida. Boxes: Alana Officer (4.1), Janet Njelesani (4.2), Frances Heywood (4.3), Donata Vivanti (4.4), Heinz Trebbin (4.5), Julia D’Andrea Greve (4.6), Alana Officer (4.7). Chapter 5: Assistance and support Contributors: Michael Bach, Diana Chiriacescu, Alexandre Cote, Vladimir Cuk, Patrick Devlieger, Karen Fisher, Tamar Heller, Martin Knapp, Sarah Parker, Gerard Quinn, Aleksandra Posarac, Marguerite Schneider, Tom Shakespeare, Patricia Noonan Walsh. Boxes: Tina Minkowitz, Maths Jesperson (5.1), Robert Nkwangu (5.2), Disability Rights International (5.3). xvi Contributors Chapter 6: Enabling environments Contributors: Judy Brewer, Alexandra Enders, Larry Goldberg, Linda Hartman, Jordana Maisel, Charlotte McClain-Nhlapo, Marco Nicoli, Karen Peffley, Katherine Seelman, Tom Shakespeare, Edward Steinfeld, Jim Tobias, Diahua Yu. Boxes: Edward Steinfeld (6.1), Tom Shakespeare (6.2), Asiah Abdul Rahim, Samantha Whybrow (6.3), Binoy Acharya, Geeta Sharma, Deepa Sonpal (6.4), Edward Steinfeld (6.5), Katherine Seelman (6.6), Hiroshi Kawamura (6.7). Chapter 7: Education Contributors: Peter Evans, Giampiero Griffo, Seamus Hegarty, Glenda Hernandez, Susan Hirshberg, Natalie Jessup, Elizabeth Kozleski, Margaret McLaughlin, Susie Miles, Daniel Mont, Diane Richler, Thomas Sabella. Boxes: Susan Hirshberg (7.1), Margaret McLaughlin (7.2), Kylie Bates, Rob Regent (7.3), Hazel Bines, Bliss Temple, R.A. Villa (7.4), Ingrid Lewis (7.5). Chapter 8: Work and employment Contributors: Susanne Bruyère, Sophie Mitra, Sara VanLooy, Tom Shakespeare, Ilene Zeitzer. Boxes: Susanne Bruyère (8.1), Anne Hawker, Alana Officer, Catherine Sykes (8.2), Peter Coleridge (8.3), Cherry Thompson-Senior (8.4), Susan Scott Parker (8.5). Chapter 9: The way forward: recommendations Contributors: Sally Hartley, Natalie Jessup, Rosamond Madden, Alana Officer, Sashka Posarac, Tom Shakespeare. Boxes: Kirsten Pratt (9.1) Technical appendices Contributors: Somnath Chatterji, Marleen De Smedt, Haishan Fu, Nenad Kostanjsek, Rosalba Lembo, Mitchell Loeb, Jennifer Madans, Rosamond Madden, Colin Mathers, Andres Montes, Nirmala Naidoo, Alana Officer, Emese Verdes, Brandon Vick. Narrative contributors The report includes narratives with personal accounts of the experiences of people with disabilities. Many people provided a narrative but not all could be included in the report. The narratives included come from Australia, Bangladesh, Barbados, Belize, Cambodia, Canada, China, Egypt, Haiti, India, Japan, Jordan, Kenya, the Netherlands, Palestinian Self-Rule Areas, Panama, the Russian Federation, the Philippines, Uganda, the United Kingdom of Great Britain and Northern Ireland, and Zambia. Only the first name of each narrative contributor has been provided for reasons of confidentiality. xvii World report on disability Peer reviewers Kathy Al Ju’beh, Dele Amosun, Yerker Anderson, Francesc Aragal, Julie Babindard, Elizabeth Badley, Ken Black, Johannes Borg, Vesna Bosnjak, Ron Brouillette, Mahesh Chandrasekar, Mukesh Chawla, Diana Chiriacescu, Ching Choi, Peter Coleridge, Ajit Dalal, Victoria de Menil, Marleen De Smedt, Shelley Deegan, Sunil Deepak, Maryanne Diamond, Steve Edwards, Arne Eide, James Elder-Woodward, Eric Emerson, Alexandra Enders, John Eriksen, Haishan Fu, Marcus Fuhrer, Michelle Funk, Ann Goerdt, Larry Goldberg, Lex Grandia, Pascal Granier, Wilfredo Guzman, Manal Hamzeh, Sumi Helal, Xiang Hiuyun, Judith Hollenweger, Mosharraf Hossain, Venus Ilagan, Deborah Iyute, Karen Jacobs, Olivier Jadin, Khandaker Jarulul Alam, Jennifer Jelsma, Steen Jensen, Nawaf Kabbara, Lissa Kauppinen, Hiroshi Kawamura, Peter Kercher, Chapal Khasnabis, Ivo Kocur, Johannes Koettl, Kalle Könköllä, Gloria Krahn, Arvo Kuddo, Gaetan Lafortune, Michel Landry, Stig Larsen, Connie Lauren-Bowie, Silvia Lavagnoli, Axel Leblois, Matilde Leonardi, Clayton Lewis, Anna Lindström, Gwynnyth Lleweyllyn, Mitchell Loeb, Michael Lokshin, Clare MacDonald, Jennifer Madans, Richard Madden, Thandi Magagula, Dipendra Manocha, Charlotte McClain-Nhlapo, John Melvin, Cem Mete, Susie Miles, Janice Miller, Marilyn Moffat, Federico Montero, Andres Montes, Asenath Mpatwa, Ashish Mukerjee, Barbara Murray, David Newhouse, Penny Norgrove, Helena Nygren Krug, Japheth Ogamba Makana, Thomas Ongolo, Tanya Packer, Trevor Parmenter, Donatella Pascolini, Charlotte Pearson, Karen Peffley, Debra Perry, Poul Erik Petersen, Immaculada Placencia-Porrero, Adolf Ratzka, Suzanne Reier, Diane Richler, Wachara Riewpaiboon, Tom Rikert, Alan Roulstone, Amanda Rozani, Moosa Salie, Mohammad Sattar Dulal, Duranee Savapan, Shekhar Saxena, Walton Schlick, Marguerite Schneider, Marianne Schultz, Kinnon Scott, Tom Seekins, Samantha Shann, Owen Smith, Beryl Steeden, Catherine Sykes, Jim Tobias, Stefan Trömel, Chris Underhill, Wim Van Brakel, Derek Wade, Nicholas Watson, Ruth Watson, Mark Wheatley, Taghi Yasamy, Nevio Zagaria, Ilene Zeitzer, Ruth Zemke, Dahong Zhuo. Additional contributors Regional consultants WHO African Region/Eastern Mediterranean Region Alice Nganwa Baingana, Betty Babirye Kwagala, Moussa Charafeddine, Kudakwashe Dube, Sally Hartley, Syed Jaffar Hussain, Deborah Oyuu Iyute, Donatilla Kanimba, Razi Khan, Olive Chifefe Kobusingye, Phitalis Were Masakhwe, Niang Masse, Quincy Mwya, Charlotte McClain-Nhlapo, Catherine Naughton, William Rowland, Ali Hala Ibrahim Sakr, Moosa Salie, Alaa I. Sebeh, Alaa Shukrallah, Sándor Sipos, Joe Ubiedo. xviii Contributors WHO Region of the Americas Georgina Armstrong, Haydee Beckles, Aaron Bruma, Jean-Claude Jalbert, Sandy Layton, Leanne Madsen, Paulette McGinnis, Tim Surbey, Corey Willet, Valerie Wolbert, Gary L. Albrecht, Ricardo Restrepo Arbelaez, Martha Aristizabal, Susanne Bruyere, Nixon Contreras, Roberto Del Águila, Susan Hirshberg, Federico Montero, Claudia Sánchez, Katherine Seelman, Sándor Sipos, Edward Steinfeld, Beatriz Vallejo, Armando Vásquez, Ruth Warick, Lisbeth Barrantes, José Luís Di Fabio, Juan Manuel Guzmán, John Stone. WHO South-East Asia Region/Western Pacific Region Tumenbayar Batdulam, Amy Bolinas, Kylie Clode, David Corner, Dahong Zhuo, Michael Davies, Bulantrisna Djelantik, Mohammad Abdus Sattar Dulal, Betty Dy-Mancao, Fumio Eto, Anne Hawker, Susan Hirshberg, Xiaolin Huang, Venus Ilagan, Yoko Isobe, Emmanuel Jimenez, Kenji Kuno, Leonard Li, Rosmond Madden, Charlotte McClain-Nhlapo, Anuradha Mohit, Akiie Ninomiya, Hisashi Ogawa, Philip O’Keefe, Grant Preston, Wachara Riewpaiboon, Noriko Saito, Chamaiparn Santikarn, Mary Scott, Sándor Sipos, Catherine Sykes, Maya Thomas, Mohammad Jashim Uddin, Zhuoying Qiu, Filipinas Ganchoon, Geetika Mathur, Miriam Taylor, John Andrew Sanchez. The WHO Regional Office for European Region Viveca Arrhenius, Jerome Bickenbach, Christine Boldt, Matthias Braubach, Fabrizio Cassia, Diana Chiriacescu, Marleen De Smedt, Patrick Devlieger, Fabrizio Fea, Federica Francescone, Manuela Gallitto, Denise Giacomini,Donato Greco, Giampiero Griffo, Gunnar Grimby, Ahiya Kamara, Etienne Krug, Fiammetta Landoni, Maria G. Lecce, Anna Lindström, Marcelino Lopez, Isabella Menichini, Cem Mete, Daniel Mont, Elisa Patera, FrancescaRacioppi, Adolf Ratzka, Maria Pia Rizzo, Alan Roulstone, Tom Shakespeare, Sándor Sipos, Urbano Stenta, Raffaele Tangorra, Damjan Tatic, Donata Vivanti, Mark Wheatley. None of the experts involved in the development of this Report declared any conflict of interest. xix Introduction Many people with disabilities do not have equal access to health care, edu- cation, and employment opportunities, do not receive the disability-related services that they require, and experience exclusion from everyday life activities. Following the entry into force of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), disability is increasingly understood as a human rights issue. Disability is also an important develop- ment issue with an increasing body of evidence showing that persons with disabilities experience worse socioeconomic outcomes and poverty than persons without disabilities. Despite the magnitude of the issue, both awareness of and scientific information on disability issues are lacking. There is no agreement on defi- nitions and little internationally comparable information on the incidence, distribution and trends of disability. There are few documents providing a compilation and analysis of the ways countries have developed policies and responses to address the needs of people with disabilities. In response to this situation, the World Health Assembly (resolution 58.23 on “Disability, including prevention, management and rehabilitation”) requested the World Health Organization (WHO) Director-General to produce a World report on disability based on the best available scientific evidence. The World report on disability has been produced in partnership with the World Bank, as previous experience has shown the benefit of col- laboration between agencies for increasing awareness, political will and action across sectors. The World report on disability is directed at policy-makers, practition- ers, researchers, academics, development agencies, and civil society. Aims The overall aims of the Report are: ■ To provide governments and civil society with a comprehensive descrip- tion of the importance of disability and an analysis of the responses pro- vided, based on the best available scientific information. ■ Based on this analysis, to make recommendations for action at national and international levels. xxi World report on disability Scope of the Report The Report focuses on measures to improve accessibility and equality of opportunity; promoting participation and inclusion; and increasing respect for the autonomy and dignity of persons with disabilities. Chapter 1 defines terms such as disability, discusses prevention and its ethical considerations, introduces the International Classification of Functioning, Disability and Health (ICF) and the CRPD, and discusses disability and human rights, and disability and development. Chapter 2 reviews the data on disability prev- alence and the situation of people with disabilities worldwide. Chapter  3 explores access to mainstream health services for people with disabilities. Chapter 4 discusses rehabilitation, including therapies and assistive devices. Chapter 5 investigates support and assistance services. Chapter 6 explores inclusive environments, both in terms of physical access to buildings, trans- port, and so on, but also access to the virtual environments of informa- tion and communication technology. Chapter  7 discusses education, and Chapter  8 reviews employment for people with disabilities. Each chapter includes recommendations, which are also drawn together to provide broad policy and practice considerations in Chapter 9. Process The development of this Report has been led by an Advisory Committee and an Editorial Board, and has taken over three years. WHO and the World Bank acted as secretariat throughout this process. Based on outlines pre- pared by the Editorial Board, each chapter was written by a small number of authors, working with a wider group of experts from around the world. Wherever possible, people with disabilities were involved as authors and experts. Nearly 380 contributors from various sectors and all the regions of the world wrote text for the report. The drafts of each chapter were reviewed following input from regional consultations organized by WHO Regional Offices, which involved local academics, policy-makers, practitioners, and people with disabilities. During these consultations, experts had the opportunity to propose overall recom- mendations (see Chapter 9). The complete chapters were revised by editors on the basis of human rights standards and best available evidence, subjected to external peer review, which included representatives of disabled people’s organizations. The text was finally reviewed by the World Bank and WHO. It is anticipated that the recommendations in this Report will remain valid until 2021. At that time, the Department of Violence and Injury Prevention and Disability at WHO headquarters in Geneva will initiate a review of the document. xxii Introduction Moving forward This World report on disability charts the steps that are required to improve participation and inclusion of people with disabilities. The aspiration of WHO, the World Bank, and all the authors and editors of this World report on disability is that it contributes to concrete actions at all levels and across all sectors, and thus helps to promote social and economic development and the achievement of the human rights of persons with disabilities across the world. xxiii Chapter 1 “I am a black woman with a disability. Some people make a bad face and don’t include me. People don’t treat me well when they see my face but when I talk to them sometimes it is better. Before anyone makes a decision about someone with a disability they should talk to them.” Haydeé “Can you imagine that you’re getting up in the morning with such severe pain which disables you from even moving out from your bed? Can you imagine yourself having a pain which even requires you to get an assistance to do the very simple day to day activi- ties? Can you imagine yourself being fired from your job because you are unable to per- form simple job requirements? And finally can you imagine your little child is crying for hug and you are unable to hug him due to the pain in your bones and joints?” Nael “My life revolves around my two beautiful children. They see me as ‘Mummy’, not a person in a wheelchair and do not judge me or our life. This is now changing as my efforts to be part of their life is limited by the physical access of schools, parks and shops; the attitudes of other parents; and the reality of needing 8 hours support a day with my per- sonal care…I cannot get into the houses of my children’s friends and must wait outside for them to finish playing. I cannot get to all the classrooms at school so I have not met many other parents. I can’t get close to the playground in the middle of the park or help out at the sporting events my children want to be part of. Other parents see me as different, and I have had one parent not want my son to play with her son because I could not help with supervision in her inaccessible house.” Samantha “Near the start of the bus route I climb on. I am one of the first passengers. People continue to embark on the bus. They look for a seat, gaze at my hearing aids, turn their glance quickly and continue walking by. Only when people with disabilities will really be part of the society; will be educated in every kindergarten and any school with personal assistance; live in the community and not in different institutions; work in all places and in any position with accessible means; and will have full accessibility to the public sphere, people may feel comfortable to sit next to us on the bus.” Ahiya 1 Understanding disability Disability is part of the human condition. Almost everyone will be temporarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning. Most extended families have a disabled member, and many non-disabled people take responsibility for supporting and caring for their relatives and friends with disabilities (1–3). Every epoch has faced the moral and political issue of how best to include and support people with disabilities. This issue will become more acute as the demographics of societies change and more people live to an old age (4). Responses to disability have changed since the 1970s, prompted largely by the self-organization of people with disabilities (5, 6), and by the growing tendency to see disability as a human rights issue (7). Historically, people with disabilities have largely been provided for through solutions that segre- gate them, such as residential institutions and special schools (8). Policy has now shifted towards community and educational inclusion, and medically- focused solutions have given way to more interactive approaches recognizing that people are disabled by environmental factors as well as by their bodies. National and international initiatives – such as the United Nations Standard Rules on the Equalization of Opportunities of Persons with Disabilities (9) – have incorporated the human rights of people with disabilities, culminating in 2006 with the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This World report on disability provides evidence to facilitate imple- mentation of the CRPD. It documents the circumstances of persons with disabilities across the world and explores measures to promote their social participation, ranging from health and rehabilitation to education and employment. This first chapter provides a general orientation about dis- ability, introducing key concepts – such as the human rights approach to disability, the intersection between disability and development, and the International Classification of Functioning, Disability and Health (ICF) – and explores the barriers that disadvantage persons with disabilities. What is disability? Disability is complex, dynamic, multidimensional, and contested. Over recent decades, the disabled people’s movement (6, 10) – together with 3 World report on disability numerous researchers from the social and Environment health sciences (11, 12) – have identified the role of social and physical barriers in disabil- A person’s environment has a huge impact ity. The transition from an individual, medical on the experience and extent of disability. perspective to a structural, social perspective Inaccessible environments create disability by has been described as the shift from a “medical creating barriers to participation and inclusion. model” to a “social model” in which people are Examples of the possible negative impact of the viewed as being disabled by society rather than environment include: by their bodies (13). ■ a Deaf individual without a sign language The medical model and the social model are interpreter often presented as dichotomous, but disability ■ a wheelchair user in a building without an should be viewed neither as purely medical nor accessible bathroom or elevator as purely social: persons with disabilities can ■ a blind person using a computer without often experience problems arising from their screen-reading software. health condition (14). A balanced approach is needed, giving appropriate weight to the differ- Health is also affected by environmental ent aspects of disability (15, 16). factors, such as safe water and sanitation, nutri- The ICF, adopted as the conceptual frame- tion, poverty, working conditions, climate, or work for this World report on disability, under- access to health care. As the World Health stands functioning and disability as a dynamic Organization (WHO) Commission on Social interaction between health conditions and Determinants of Health has argued, inequality contextual factors, both personal and envi- is a major cause of poor health, and hence of ronmental (see Box  1.1) (17). Promoted as disability (20). a “bio-psycho-social model”, it represents a The environment may be changed to improve workable compromise between medical and health conditions, prevent impairments, and social models. Disability is the umbrella term improve outcomes for persons with disabilities. for impairments, activity limitations and par- Such changes can be brought about by legisla- ticipation restrictions, referring to the negative tion, policy changes, capacity building, or tech- aspects of the interaction between an indi- nological developments leading to, for instance: vidual (with a health condition) and that indi- ■ accessible design of the built environment vidual’s contextual factors (environmental and and transport; personal factors) (19). ■ signage to benefit people with sensory The Preamble to the CRPD acknowledges impairments; that disability is “an evolving concept”, but also ■ more accessible health, rehabilitation, edu- stresses that “disability results from the inter- cation, and support services; action between persons with impairments and ■ more opportunities for work and employ- attitudinal and environmental barriers that ment for persons with disabilities. hinder their full and effective participation in society on an equal basis with others”. Defining Environmental factors include a wider set disability as an interaction means that “disabil- of issues than simply physical and information ity” is not an attribute of the person. Progress access. Policies and service delivery systems, on improving social participation can be made including the rules underlying service provi- by addressing the barriers which hinder per- sion, can also be obstacles (21). Analysis of sons with disabilities in their day to day lives. public health service financing in Australia, for 4 Chapter 1 Understanding disability Box 1.1. New emphasis on environmental factors The International Classification of Functioning, Disability and Health (ICF) (17) advanced the understanding and measurement of disability. It was developed through a long process involving academics, clinicians, and – impor- tantly – persons with disabilities (18). The ICF emphasizes environmental factors in creating disability, which is the main difference between this new classification and the previous International Classification of Impairments, Disabilities, and Handicaps (ICIDH). In the ICF, problems with human functioning are categorized in three inter- connected areas: ■ impairments are problems in body function or alterations in body structure – for example, paralysis or blindness; ■ activity limitations are difficulties in executing activities – for example, walking or eating; ■ participation restrictions are problems with involvement in any area of life – for example, facing discrimina- tion in employment or transportation. Disability refers to difficulties encountered in any or all three areas of functioning. The ICF can also be used to understand and measure the positive aspects of functioning such as body functions, activities, participation and environmental facilitation. The ICF adopts neutral language and does not distinguish between the type and cause of disability – for instance, between “physical” and “mental” health. “Health conditions” are diseases, injuries, and disorders, while “impairments” are specific decrements in body functions and structures, often identified as symptoms or signs of health conditions. Disability arises from the interaction of health conditions with contextual factors – environmental and personal factors as shown in the figure below. Representation of the International Classification of Functioning, Disability and Health Health condition (disorder or disease) Body functions Activities Participation and structures Environmental Personal factors factors The ICF contains a classification of environmental factors describing the world in which people with different levels of functioning must live and act. These factors can be either facilitators or barriers. Environmental factors include: products and technology; the natural and built environment; support and relationships; attitudes; and services, systems, and policies. The ICF also recognizes personal factors, such as motivation and self-esteem, which can influence how much a person participates in society. However, these factors are not yet conceptualized or classified. It further distin- guishes between a person’s capacities to perform actions and the actual performance of those actions in real life, a subtle difference that helps illuminate the effect of environment and how performance might be improved by modifying the environment. The ICF is universal because it covers all human functioning and treats disability as a continuum rather than categorizing people with disabilities as a separate group: disability is a matter of more or less, not yes or no. However, policy-making and service delivery might require thresholds to be set for impairment severity, activity limitations, or participation restriction. It is useful for a range of purposes – research, surveillance, and reporting – related to describing and measuring health and disability, including: assessing individual functioning, goal setting, treatment, and monitoring; measuring outcomes and evaluating services; determining eligibility for welfare benefits; and developing health and disability surveys. 5 World report on disability instance, found that reimbursement of health in different settings (31). People with mental providers did not account for the additional health conditions face discrimination even in time often required to provide services to per- health care settings (24, 32). sons with disabilities; hospitals that treated Negative attitudes towards disability can patients with a disability were thus disadvan- result in negative treatment of people with dis- taged by a funding system that reimbursed abilities, for example: them a fixed amount per patient (22). ■ children bullying other children with dis- Analysis of access to health care services abilities in schools in Europe found organizational barriers – such ■ bus drivers failing to support access needs as waiting lists, lack of a booking system for of passengers with disabilities appointments, and complex referral systems – ■ employers discriminating against people that are more complicated for persons with dis- with disabilities abilities who may find it difficult to arrive early, ■ strangers mocking people with disabilities. or wait all day, or who cannot navigate complex systems (23, 24). While discrimination is not Negative attitudes and behaviours have an intended, the system indirectly excludes per- adverse effect on children and adults with dis- sons with disabilities by not taking their needs abilities, leading to negative consequences such into account. as low self-esteem and reduced participation Institutions and organizations also need to (32). People who feel harassed because of their change – in addition to individuals and envi- disability sometimes avoid going to places, ronments – to avoid excluding people with dis- changing their routines, or even moving from abilities. The 2005 Disability Discrimination their homes (33). Act in the United Kingdom of Great Britain Stigma and discrimination can be com- and Northern Ireland directed public sector bated, for example, through direct personal organizations to promote equality for persons contact and through social marketing (see with disability: by instituting a corporate dis- Box 1.2) (37–40). World Psychiatric Association ability equality strategy, for example, and by campaigns against stigmatizing schizophrenia assessing the potential impact of proposed poli- over 10 years in 18 countries have demon- cies and activities on disabled people (25). strated the importance of long-term interven- Knowledge and attitudes are important tions, broad multisectoral involvement, and of environmental factors, affecting all areas of including those who have the condition (41). service provision and social life. Raising aware- Evidence from Norway showed that knowledge ness and challenging negative attitudes are about psychosis among the general population often first steps towards creating more accessi- improved after a year of information cam- ble environments for persons with disabilities. paigns, and that the duration of untreated psy- Negative imagery and language, stereotypes, chosis fell from 114 weeks in 1997 to 20 weeks and stigma – with deep historic roots – persist in 1999 due to greater recognition and early for people with disabilities around the world intervention with patients (42). (26–28). Disability is generally equated with Community-based rehabilitation (CBR) pro- incapacity. A review of health-related stigma grammes can challenge negative attitudes in found that the impact was remarkably similar rural communities, leading to greater visibility in different countries and across health con- and participation by people with disabilities. A ditions (29). A study in 10 countries found three-year project in a disadvantaged commu- that the general public lacks an understand- nity near Allahabad, India, resulted in children ing of the abilities of people with intellectual with disabilities attending school for the first impairments (30). Mental health conditions are time, more people with disabilities participat- particularly stigmatized, with commonalities ing in community forums, and more people 6 Chapter 1 Understanding disability Box 1.2. Eliminating leprosy, improving lives The diagnosis and treatment of leprosy is easy and effective. The best way of preventing disabilities associated with it, as well as preventing further transmission, lies in early diagnosis and treatment. Since 1983 the disease has been curable with multidrug therapy, and since 1985 this therapy has been made available by the World Health Organization (WHO) free of charge around the world. WHO estimates that early detection and treatment with multidrug therapy have prevented about 4 million people from being disabled (34). To eliminate the disease, access to information, diagnosis, and treatment with multidrug therapy are crucial (34). The greatest barriers to eliminating the disease are ignorance and stigma. Information campaigns about leprosy in endemic areas are of supreme importance so that people affected by leprosy and their families – historically ostracized from their communities – come forward and receive treatment. Reducing stigma also improves the quality of life of people affected by leprosy and their families by improving people’s mobility, interpersonal relationships, employment, leisure, and social activities (35). In India, home to two thirds of the world’s people affected by leprosy, the BBC World Service Trust – in partnership with two Indian broadcasters Doordarshan TV and All-India Radio – launched a 16-month campaign on leprosy in 1999 (36). The campaign stressed that leprosy is curable, that drugs to cure it are available free throughout India, and that people affected by leprosy should not be excluded from society. The central messages of the campaign were: ■ leprosy is not hereditary ■ leprosy is not caused by bad deeds in a previous life ■ leprosy is not spread by touch. The campaign used 50 television and 213 radio programmes in 20 languages, and 85 000 information posters. More than 1700 live drama shows, 2746 mobile video screenings, and 3670 public events or competitions were performed in remote areas. Independent market surveys conducted before, during, and after the campaign found: ■ Reach of media campaign. The radio and TV spots were seen by 59% of respondents, or 275 million people. ■ Transmissibility and curability. The proportion of people who believed leprosy was transmitted by touch fell from 52% to 27%. The proportion believing that people with leprosy who take multidrug therapy are still infectious fell from 25% to 12%. Those who knew that leprosy was curable rose from 84% to 91%. ■ Symptoms. Awareness that loss of sensation could be a possible symptom of leprosy rose from 65% to 80%. Awareness of pale reddish patches as a possible symptom remained unchanged at 86%. Awareness of non- itchy patches as a possible symptom rose from 37% to 55%. ■ Therapies. The awareness rate in control villages (not covered in the campaign) that multidrug therapy was a cure for leprosy was only 56%, but in villages that had been shown live drama it was 82%. In rural areas awareness that the treatment was free was 89% among those exposed to the poster campaign, against 20% in those not exposed. ■ Stigma. The proportion of people saying they would be willing to sit next to a person affected by leprosy was 10% higher in villages where drama shows had been used than in those without. Similarly, the proportion of those claiming they would be willing to eat food served by somebody affected by leprosy was 50% in villages covered by the campaign, against 32% in those not covered. Sources (34–36). bringing their children with disabilities for Persons with disabilities are diverse and heter- vaccination and rehabilitation (43). ogeneous, while stereotypical views of disabil- ity emphasize wheelchair users and a few other The diversity of disability “classic” groups such as blind people and deaf people (44). Disability encompasses the child The disability experience resulting from the born with a congenital condition such as cer- interaction of health conditions, personal fac- ebral palsy or the young soldier who loses his tors, and environmental factors varies greatly. leg to a land-mine, or the middle-aged woman 7 World report on disability with severe arthritis, or the older person with A public health approach distinguishes: dementia, among many others. Health condi- ■ Primary prevention – actions to avoid tions can be visible or invisible; temporary or or remove the cause of a health problem long term; static, episodic, or degenerating; in an individual or a population before it painful or inconsequential. Note that many arises. It includes health promotion and people with disabilities do not consider them- specific protection (for example, HIV selves to be unhealthy (45). For example, 40% education) (54). of people with severe or profound disability ■ Secondary prevention – actions to detect a who responded to the 2007–2008 Australian health problem at an early stage in an indi- National Health Survey rated their health as vidual or a population, facilitating cure, or good, very good, or excellent (46). reducing or preventing spread, or reduc- Generalizations about “disability” or ing or preventing its long-term effects (for “people with disabilities” can mislead. Persons example, supporting women with intel- with disabilities have diverse personal factors lectual disability to access breast cancer with differences in gender, age, socioeconomic screening) (55). status, sexuality, ethnicity, or cultural herit- ■ Tertiary prevention – actions to reduce the age. Each has his or her personal preferences impact of an already established disease by and responses to disability (47). Also while restoring function and reducing disease- disability correlates with disadvantage, not related complications (for example, reha- all people with disabilities are equally disad- bilitation for children with musculoskeletal vantaged. Women with disabilities experi- impairment) (56). ence the combined disadvantages associated with gender as well as disability, and may be Article 25 of the CRPD specifies Access to less likely to marry than non-disabled women Health as an explicit right for people with disabili- (48, 49). People who experience mental health ties, but primary prevention of health conditions conditions or intellectual impairments appear does not come within its scope. Accordingly, this to be more disadvantaged in many settings Report considers primary prevention only in so than those who experience physical or sensory far as people with disabilities require equal access impairments (50). People with more severe to health promotion and screening opportuni- impairments often experience greater disad- ties. Primary prevention issues are extensively vantage, as shown by evidence ranging from covered in other WHO and World Bank publica- rural Guatemala (51) to employment data from tions, and both organizations consider primary Europe (52). Conversely, wealth and status can prevention as crucial to improved overall health help overcome activity limitations and partici- of countries’ populations. pation restrictions (52). Viewing disability as a human rights issue is not incompatible with prevention of health Prevention conditions as long as prevention respects the rights and dignity of people with disabili- Prevention of health conditions associated with ties, for example, in the use of language and disability is a development issue. Attention to imagery (57, 58). Preventing disability should environmental factors – including nutrition, be regarded as a multidimensional strategy preventable diseases, safe water and sanitation, that includes prevention of disabling barriers safety on roads and in workplaces – can greatly as well as prevention and treatment of underly- reduce the incidence of health conditions lead- ing health conditions (59). ing to disability (53). 8 Chapter 1 Understanding disability Disability and human rights 1. respect for inherent dignity, individual autonomy including the freedom to make Disability is a human rights issue (7) because: one’s own choices, and independence of ■ People with disabilities experience ine- persons; qualities – for example, when they are 2. non-discrimination; denied equal access to health care, employ- 3. full and effective participation and inclu- ment, education, or political participation sion in society; because of their disability. 4. respect for difference and acceptance of ■ People with disabilities are subject to viola- persons with disabilities as part of human tions of dignity – for example, when they diversity and humanity; are subjected to violence, abuse, prejudice, 5. equality of opportunity; or disrespect because of their disability. 6. accessibility; ■ Some people with disability are denied 7. equality between men and women; autonomy – for example, when they are sub- 8. respect for the evolving capacities of chil- jected to involuntary sterilization, or when dren with disabilities and respect for the they are confined in institutions against their right of children with disabilities to pre- will, or when they are regarded as legally serve their identities. incompetent because of their disability. States ratifying the CRPD have a range of gen- A range of international documents have eral obligations. Among other things, they highlighted that disability is a human rights undertake to: issue, including the World Programme of ■ adopt legislation and other appropriate Action Concerning Disabled People (1982), the administrative measures where needed; Convention on the Rights of the Child (1989), ■ modify or repeal laws, customs, or and the Standard Rules on the Equalisation practices that discriminate directly or of Opportunities for People with Disabilities indirectly; (1993). More than 40 nations adopted disabil- ■ include disability in all relevant policies ity discrimination legislation during the 1990s and programmes; (60). The CRPD – the most recent, and the most ■ refrain from any act or practice inconsist- extensive recognition of the human rights of ent with the CRPD; persons with disabilities – outlines the civil, ■ take all appropriate measures to eliminate cultural, political, social, and economic rights discrimination against persons with dis- of persons with disabilities (61). Its purpose is to abilities by any person, organization, or “promote, protect, and ensure the full and equal private enterprise. enjoyment of all human rights and fundamen- tal freedoms by people with disabilities and to States must consult with people with dis- promote respect for their inherent dignity”. abilities and their representative organiza- The CRPD applies human rights to disabil- tions when developing laws, policies, and ity, thus making general human rights specific programmes to implement the CRPD. The to persons with disabilities (62), and clarifying Convention also requires public and private existing international law regarding disability. bodies to make “reasonable accommodation” Even if a state does not ratify the CRPD, it helps to the situation of people with disabilities. And interpret other human rights conventions to it is accompanied by an Optional Protocol that, which the state is party. if ratified, provides for a complaints procedure Article 3 of the CRPD outlines the follow- and an inquiry procedure, which can be lodged ing general principles: with the committee monitoring the treaty. 9 World report on disability The CRPD advances legal disability reform, support and assistance – and thus often directly involving people with disabilities and require more resources to achieve the same using a human rights framework. Its core mes- outcomes as non-disabled people. This is sage is that people with disabilities should what Amartya Sen has called “conversion not be considered “objects” to be managed, handicap” (75). Because of higher costs, but “subjects” deserving of equal respect and people with disabilities and their house- enjoyment of human rights. holds are likely to be poorer than non-dis- abled people with similar incomes (75–77). ■ Households with a disabled member are Disability and development more likely to experience material hardship – including food insecurity, poor housing, Disability is a development issue, because of lack of access to safe water and sanitation, its bidirectional link to poverty: disability may and inadequate access to health care (29, increase the risk of poverty, and poverty may 72, 78–81). increase the risk of disability (63). A growing body of empirical evidence from across the Poverty may increase the risk of disability. world indicates that people with disabilities and A study of 56 developing countries found that their families are more likely to experience eco- the poor experienced worse health than the nomic and social disadvantage than those with- better off (82). Poverty may lead to the onset out disability. of a health conditions associated with disability The onset of disability may lead to the including through: low birth weight, malnutri- worsening of social and economic well-being tion (83, 84), lack of clean water or adequate and poverty through a multitude of channels sanitation, unsafe work and living conditions, including the adverse impact on education, and injuries (20, 85–87). Poverty may increase employment, earnings, and increased expendi- the likelihood that a person with an existing tures related to disability (64). health condition becomes disabled, for exam- ■ Children with disabilities are less likely to ple, by an inaccessible environment or lack of attend school, thus experiencing limited access to appropriate health and rehabilitation opportunities for human capital formation services (88) (see Box 1.3). and facing reduced employment opportu- Amartya Sen’s capabilities approach (91, nities and decreased productivity in adult- 92) offers a helpful theoretical underpinning to hood (65–67). understanding development, which can be of ■ People with disabilities are more likely to particular value for the disability human rights be unemployed and generally earn less even field (93) and is compatible with both the ICF when employed (67–72). Both employment (94) and the social model of disability (76). It and income outcomes appear to worsen with moves beyond traditional economic measures the severity of the disability (52, 73). It is such as GDP, or concepts of utility, to empha- harder for people with disabilities to benefit size human rights and “development as free- from development and escape from poverty dom” (91), promoting the understanding that (74) due to discrimination in employment, the poverty of people with disabilities – and limited access to transport, and lack of other disadvantaged peoples – comprises social access to resources to promote self-employ- exclusion and disempowerment, not just lack ment and livelihood activities (71). of material resources. It emphasizes the diver- ■ People with disabilities may have extra sity of aspirations and choices that different costs resulting from disability – such people with disabilities might hold in different as costs associated with medical care or cultures (95). It also resolves the paradox that assistive devices, or the need for personal many people with disabilities express that they 10 Chapter 1 Understanding disability Box 1.3. Safety net interventions for people with disabilities The United Nations Convention on the Rights of Persons with Disabilities (CRPD) states that people with disabilities have an equal right to social protection. Safety nets are a type of social protection intervention that target vulnerability and poverty. Many countries provide safety nets to poor people with disabilities and their households, either through specific disability-targeted programmes or more commonly through general social assistance programmes. While systematic evidence is lacking, anecdotal evidence suggests that persons with disabilities may face barriers to accessing safety nets when, for example, information is inadequate or inaccessible, the welfare offices are physi- cally inaccessible, or the programmes’ design features do not take into account specific needs of disabled people. Thus, special measures may be needed to ensure that safety nets are inclusive of disabled people. For example: ■ information about programmes should be accessible and reach the intended recipients. This may require targeted outreach; ■ proxies designated by persons with disabilities should be allowed to conduct many of the transactions in accessing programmes; ■ the welfare offices, as well as the transport system, need to be accessible; ■ programmes’ eligibility criteria may need to specifically include disability; ■ means testing mechanisms may need to take into account the extra costs of disability; ■ cash transfers might provide higher payments to beneficiaries with disabilities to help with extra costs of living with a disability; ■ conditional cash transfers may need to be adjusted to specific circumstances of children with disabilities; ■ workfare can introduce quotas and be sensitive to disability; ■ labour activation measures should be sensitive to disability. Some countries, such as Albania, Bangladesh, Brazil, China, Romania, and the Russian Federation also have specific programmes targeted at people with disabilities. The design of these programmes varies. In some cases they cover all disabled people, in other cases they are means tested, or targeted at children with disabilities. Administration of disability benefits requires assessment of disability. Many formal assessment processes still use predominantly medical criteria, though there has been a move towards adopting a more comprehensive assessment approach focusing on functioning and using the International Classification of Functioning, Disability and Health framework. More research is needed to better understand what works with regards to disability assessment and to identify good practice. Evidence on the impact of safety nets on people with disabilities is limited. While they may improve health and economic status, it is less clear whether access to education also improves. For safety nets to be effective in protecting disabled people, many other public programmes need to be in place, such as health, rehabilitation, education and training and environmental access. More research is needed to better understand what works in providing safety nets to people with disabilities and their households. Source (89, 90). have a good quality of life (96), perhaps because obligations to persons with disabilities, empha- they have succeeded in adapting to their situ- sizing development and measures to promote ation. As Sen has argued, this does not mean the participation and well-being of people with that it is not necessary to address what can be disabilities worldwide. It stresses the need to objectively assessed as their unmet needs. address disability in all programming rather The capabilities approach also helps in than as a stand-alone thematic issue. Moreover, understanding the obligations that states owe its Article 32 is the only international human to individuals to ensure that they flourish, rights treaty article promoting measures for exercise agency, and reach their potential as international cooperation that include, and are human beings (97). The CRPD specifies these accessible to, persons with disabilities. 11 World report on disability Box 1.4. The Millennium Development Goals and disability The Millennium Development Goals (MDGs) – agreed on by the international community in 2000 and endorsed by 189 countries – are a unified set of development objectives addressing the needs of the world’s poorest and most marginalized people, and are supposed to be achieved by 2015. The goals are: 1. eradicate extreme poverty and hunger 2. achieve universal primary education 3. promote gender equality and empower women 4. reduce child mortality 5. improve maternal health 6. combat HIV/AIDS, malaria, and other diseases 7. ensure environmental sustainability 8. develop a global partnership for development. The MDGs are a compact between developing and developed nations. They recognize the efforts that must be taken by developing countries themselves, as well as the contribution that developed countries need to make through trade, development assistance, debt relief, access to essential medicines, and technology transfer. While some of the background documents explicitly mention people with disabilities, they are not referred to in the MDGs, or in the material generated as part of the process to achieve them. The 2010 MDG report is the first to mention disabilities, noting the limited opportunities facing children with disabilities, and the link between disability and marginalization in education. The Ministerial Declaration of July 2010 recognizes disability as a cross-cutting issue essential for the attainment of the MDGs, emphasizing the need to ensure that women and girls with disabilities are not subject to multiple or aggravated forms of discrimination, or excluded from participation in the implementation of the MDGs (101). The United Nations General Assembly has highlighted the invisibility of persons with disabilities in official statistics (102). The General Assembly concluded its High Level Meeting on the MDGs in September 2010 by adopting the resolution “Keeping the promise: united to achieve the Millennium Development Goals,” which recognizes that “policies and actions must also focus on persons with disabilities, so that they benefit from progress towards achieving the MDGs” (103). Despite the widely acknowledged inter- beneficiaries and in the design, implementa- connection between disability and poverty, tion, and monitoring of interventions (104). efforts to promote development and poverty Despite the role of CBR (see Box  1.5), and reduction have not always adequately included many other promising initiatives by national disability (76, 98–100). Disability is not governments or national and international explicitly mentioned in the eight Millennium NGOs, systematic removal of barriers and Development Goals (MDGs), or the 21 targets, social development has not occurred, and dis- or the 60 indicators for achieving the goals ability still is often considered in the medical (see Box 1.4). component of development (104). People with disabilities can benefit from Responses to disability have undergone a development projects; examples in this Report radical change in recent decades: the role of show that the situation for people with dis- environmental barriers and discrimination in abilities in low-income countries can be contributing to poverty and exclusion is now improved. But disability needs to be a higher well understood, and the CRPD outlines the priority, successful initiatives need to be scaled measures needed to remove barriers and pro- up, and a more coherent response is needed. mote participation. Disability is a development In addition, people with disabilities need to issue, and it will be hard to improve the lives be included in development efforts, both as of the most disadvantaged people in the world 12 Chapter 1 Understanding disability Box 1.5. Community-based rehabilitation Since the 1970s community-based rehabilitation (CBR) has been an important strategy to respond to the needs of people with disabilities, particularly in developing countries. CBR was initially promoted to deliver rehabilita- tion services in countries with limited resources. Field manuals such as Training in the community for people with disabilities (105) provided family members and community workers with practical information about how to implement basic rehabilitation interventions. More than 90 countries around the world continue to develop and strengthen their CBR programmes. Through an ongoing evolutionary process CBR is shifting from a medical-focused, often single-sector approach, to a strategy for rehabilitation, equalization of opportunities, poverty reduction, and social inclusion of people with disabilities (106). Increasingly, CBR is implemented through the combined efforts of people with disabilities, their families, organizations, and communities, and the relevant government and nongovernmental services (106). In Chamarajnagar, one of the poorest districts of Karnataka, India, many community members did not have access to basic sanitation facilities, putting their health at risk. The Indian government offered grants to families living in these areas to construct toilets. The total cost to construct one toilet was estimated to be US$ 150. Funding the remaining amount was difficult for most people, particularly people with disabilities. A local nongovernmental organization – Mobility India – assisted people with disabilities and their families to construct accessible toilets. Using existing community-based networks and self-help groups, Mobility India organized street plays and wall paintings to raise awareness about hygiene and the importance of proper sanitation. As people became interested and motivated, Mobility India – with financial support from MIBLOU, Switzerland, and local contributions – facilitated access to basic sanitation. The group members selected poor households with disabled family members who had the greatest need for a toilet, and they coordinated the construction work in partnership with families and ensured proper use of funds. As a result of the pilot project, 50 accessible toilets were constructed in one year. Many people with disabilities no longer need to crawl or be carried long distances for their toileting needs. They have become independent and, importantly, been able to reclaim their dignity. Their risk of developing health conditions associated with poor sanitation has also been significantly reduced. Evidence for the effectiveness of CBR varies, but research and evaluation are increasingly being conducted (107–110), and information sharing is increasing through regional networks such as the CBR Africa Network, the CBR Asia-Pacific Network, and the CBR American and Caribbean Network. The recent publication of the CBR guidelines (111) joins the development and human rights aspects of disability. The guidelines: ■ promote the need for inclusive development for people with disabilities in the mainstream health, education, social, and employment sectors; ■ emphasize the need to promote the empowerment of people with disabilities and their family members; ■ through the provision of practical suggestions, position CBR as a tool that countries can use to implement the Convention on the Rights of Persons with Disabilities. without addressing the specific needs of per- disabilities to enjoy the choices and life oppor- sons with disabilities. tunities currently available to only a minority by This World report on disability provides a minimizing the adverse impacts of impairment guide to improving the health and well-being and eliminating discrimination and prejudice. of persons with disabilities. It seeks to provide People’s capabilities depend on external clear concepts and the best available evidence, conditions that can be modified by govern- to highlight gaps in knowledge and stress the ment action. In line with the CRPD, this need for further research and policy. Stories of Report shows how the capabilities of people success are recounted, as are those of failure with disabilities can be expanded; their well- and neglect. The ultimate goal of the Report being, agency, and freedom improved; and and of the CRPD is to enable all people with their human rights realized. 13 World report on disability References 1. Zola IK. Toward the necessary universalizing of a disability policy. The Milbank Quarterly, 1989,67:Suppl 2 Pt 2401-428. doi:10.2307/3350151 PMID:2534158 2. Ferguson PM. Mapping the family: disability studies and the exploration of parental response to disability. In: Albrecht G, Seelman KD, Bury M, eds. Handbook of Disability Studies. 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Systematic synthesis of community-based rehabilitation (CBR) project evaluation reports for evidence-based policy: a proof-of-concept study. BMC International Health and Human Rights, 2008,8:3- doi:10.1186/1472- 698X-8-3 PMID:18325121 110. Finkenflügel H, Wolffers I, Huijsman R. The evidence base for community-based rehabilitation: a literature review. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Réadaptation, 2005,28:187-201. PMID:16046912 111. World Health Organization, United Nations Educational, Scientific and Cultural Organization, International Labour Organization, International Disability and Development Consortium. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 17 Chapter 2 “I lost my leg by landmine when I was 5 years old, at that time I went to the rice field with my mother to get firewood. Unfortunately I stepped on a mine. After the accident I was very sad when I saw the other children playing or swimming in the river because I have no leg. I used to stand with my crutch made of wood and I wish I could play freely like the other children too. And when I walked to school some children they called me kombot, meaning disabled person, and [the discrimination] make me feel shy and cry and disap- pointed. So I want all people to have equal rights and not discriminate against each other.” Song “At the age of 9, I became deaf as a result of a bout with meningitis. In 2002, I went for Voluntary Counseling and Testing (VCT). The results showed that I was HIV+. I become devastated and lost hope to live because I thought that being HIV+ was the end of world for me. Later, I met a disabled person who spiritually encouraged me to accept my status. Now I have confidence to be able to speak out on HIV/AIDS openly. I have been inter- viewed widely by print and electronic media and I have been invited to speak in public meetings. I am creating awareness on the importance of VCT and encouraging people to know their status. My work is limited by lack of money. Deaf people living in rural areas have no information on HIV/AIDS. I would like to break the barriers by going to visit them right where they live.” Susan “What makes me to feel not included in this school is because my parents are poor, they can’t provide me with enough books. This makes my life difficult in the school. They also can’t buy me everything which I am supposed to have, like clothes. Being in school without books and pens also makes me feel not included, because teachers used to send me out because I don’t have books to write in.” Jackline 2 Disability – a global picture Robust evidence helps to make well informed decisions about disability policies and programmes. Understanding the numbers of people with dis- abilities and their circumstances can improve efforts to remove disabling barriers and provide services to allow people with disabilities to participate. Collecting appropriate statistical and research data at national and interna- tional levels will help parties to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) formulate and implement policies to achieve internationally agreed development goals (1). This chapter offers a picture of disability that succeeding chapters build on. It presents estimates of the prevalence of disability; factors affecting trends in disability (demographic, health, environmental); the socioeco- nomic circumstances of people with disabilities, need and unmet needs, and the costs of disability. It proposes steps for improving data at national and international levels. The evidence here is based on national (such as the census, population surveys and administrative data registries) and international data sets and a large number of recent studies. Each source has its purposes, strengths, and weaknesses. The data here are, to varying degrees, in accord with the defini- tion of disability outlined in Chapter 1. Additional data and methodological explanations are in the Technical appendices (A, B, C, and D). Measuring disability Disability, a complex multidimensional experience (see Chapter  1), poses several challenges for measurement. Approaches to measuring disability vary across countries and influence the results. Operational measures of disability vary according to the purpose and application of the data, the conception of disability, the aspects of disability examined – impairments, activity limitations, participation restrictions, related health conditions, environmental factors – the definitions, question design, reporting sources, data collection methods, and expectations of functioning. Impairment data are not an adequate proxy for disability informa- tion. Broad “groupings” of different “types of disability” have become part of the language of disability, with some surveys seeking to determine the prevalence of different “types of disability” based directly or indirectly on 21 World report on disability assessments and classifications. Often, “types of increasingly switching to a continuum approach disability” are defined using only one aspect of to measurement, where estimates of prevalence disability, such as impairments – sensory, phys- of disability – and functioning – are derived from ical, mental, intellectual – and at other times assessing levels of disability in multiple domains they conflate health conditions with disability. (4–8). Estimates vary according to where the People with chronic health conditions, com- thresholds on the continuum of disability are munication difficulties, and other impairments set, and the way environmental influences are may not be included in these estimates, despite taken into account. Disaggregating these data encountering difficulties in everyday life. further by sex, age, income, or occupation is There is an implicit assumption that each important for uncovering patterns, trends, and “type of disability” has specific health, educa- other information about “subgroups” of people tional, rehabilitation, social, and support needs. experiencing disability. However, diverse responses may be required – for The data collection method also influences example, two individuals with the same impair- results. Censuses and surveys take varying ment may have very different experiences and approaches to measuring disability, and the use needs. While countries may need information of these approaches to data collection in the same on impairments – for instance, to help design country often report different rates of disability specific services or to detect or prevent discrimi- (see Box 2.1). Censuses cover entire populations, nation – the usefulness of such data is limited, occur at long intervals, and by their nature can because the resulting prevalence rates are not incorporate only a few disability-relevant ques- indicative of the entire extent of disability. tions. While considerable socioeconomic data, Data on all aspects of disability and con- such as employment rates and marital status, textual factors are important for constructing a are available from censuses, they can provide complete picture of disability and functioning. only limited information about participation. Without information on how particular health On the other hand, censuses tend to be carried conditions in interaction with environmental out regularly and so can also give information barriers and facilitators affect people in their on trends over a certain period. Surveys have everyday lives, it is hard to determine the scope the possibility of providing richer information of disability. People with the same impair- through more comprehensive questions includ- ment can experience very different types and ing on institutionalized populations. In devel- degrees of restriction, depending on the con- oped countries, for example, survey questions text. Environmental barriers to participation identify people with disabilities for impair- can differ considerably between countries and ments in body function and structure, but also communities. For example, many children increasingly for activities, participation, and drop out of school in Brazil because of a lack environmental factors. Some surveys also pro- of reading glasses, widely available in most vide information on the origins of impairments, high-income countries (2). Stigma attached to the degree of assistance provided, service acces- impairments as diverse as missing limbs and sibility, and unmet needs. anxiety, can result in similar limits on a per- Countries reporting a low disability preva- son’s participation in work. This was shown in a lence rate – predominantly developing countries recent comparison between two surveys in the – tend to collect disability data through censuses United States of America that focused on the or use measures focused exclusively on a narrow work limitations of individuals and on actual choice of impairments (10–12). Countries work performance (3). reporting higher disability prevalence tend to Disability can be conceptualized on a con- collect their data through surveys and apply a tinuum from minor difficulties in functioning measurement approach that records activity to major impacts on a person’s life. Countries are limitations and participation restrictions in 22 Chapter 2 Disability – a global picture Box 2.1. The Irish census and the disability survey of 2006 In April 2006 the Central Statistics Office in Ireland carried out a population census that included two questions on disability relating the presence of a long-term health condition and the impact of that condition on functioning. It found that 393 785 people in Ireland were disabled, a rate of 9.3%. Later in 2006 the Central Statistics Office’s National Disability Survey (NDS) followed up with a sample of those who had reported a disability in the census, plus a group of people in private households who had not reported a disability. The NDS used a broader defini- tion of disability than the census, with more domains, including pain and breathing, and a measure of severity. Completed questionnaires were received from 14 518 people who had reported a disability in the census and from 1551 who had not done so. There was a high degree of consistency between the responses to the census and the NDS: ■ of those in private households who reported a disability in the census, 88% also reported a disability in the NDS; ■ of those in non-private households who reported a disability in the census, 97% also reported a disability in the NDS; ■ of those in private households who did not report a disability in the census, 11.5% were found to have a dis- ability in the NDS. Extrapolating the NDS findings to the whole population produced an overall national disability rate of 18.5%. The differences in the disability rates obtained in the census and the NDS may result from the following: ■ The NDS used face-to-face interviews, while the census forms were self-completed. ■ The census was a large survey designed for a range of purposes. The NDS focused solely on disability defined as difficulties in functioning in any of the following domains: seeing, hearing, speech, mobility and dexterity, remembering and concentrating, intellectual and learning, emotional, psychological, and mental health, and pain and breathing. ■ The inclusion of a pain domain in the NDS resulted in a significantly higher disability rate, with 46% of those not reporting disabilities in the census reporting pain in the NDS. ■ Those who only reported a disability in the NDS had a lower level of difficulty and were more likely to have only a single disability, rather than disabilities in several domains. ■ More children reported a disability in the NDS than in the census, perhaps because of the more detailed questions in the NDS. This example shows that prevalence estimates can be affected by the number and type of questions, the level- of-difficulty scale, the range of explicit disabilities, and the survey methodology. The differences between the two measures are mainly due to the domains included and the threshold of the definition of disability. If the domain coverage is narrow (for example, pain is excluded) many people experiencing difficulties in functioning may be excluded. Where resources permit, specific surveys on disability, with comprehensive domain coverage, should be carried out in addition to a census. They provide more comprehensive data, across age groups, for policy and programmes. Note: The actual questions used in the two surveys are available in the published reports. Sources (5, 9). addition to impairments. If institutionalized The question design and reporting source populations are included in a survey, prevalence can affect estimates. The underlying purpose of rates will also be higher (13). These factors influ- a survey – whether a health or general survey, ence comparability at the national and interna- for instance – will affect how people respond tional levels and the relevance of the data to a (14). Several studies have found differences in wider set of users. While progress is being made “prevalence” between self-reported and meas- – as with activity limitation studies in Lesotho, ured aspects of disability (15–18). Disability is Malawi, Mozambique, Zambia, and Zimbabwe interpreted in relation to what is considered – accurate data on disability are mostly lacking normal functioning, which can vary based on for developing countries. the context, age group, or even income group 23 World report on disability (2). For example, older persons may not self- disability surveys (see Technical appendix B) identify as having a disability, despite having (22, 23). But the definitions and methodolo- significant difficulties in functioning, because gies used vary so greatly between countries that they consider their level of functioning appro- international comparisons still remain difficult. priate for their age. This also makes it hard for signatories of the Where children are involved, there are fur- CRPD to monitor their progress in implement- ther complexities. Parents or caregivers – the ing the Convention against a common set of natural proxy responders in surveys – may not indicators. accurately represent the experience of the child Data gathered need to be relevant at the (19). Questions in surveys developed for adults national level and comparable at the global but used for children may also skew results. level – both of which can be achieved by basing Imprecise or off-putting wording in the ques- design on international standards, like the tions – such as using the word “disabled” when International Classification of Functioning, asking about difficulty with an activity (20, 21) Disability and Health (ICF). – can also result in under-reporting (2). International frameworks and resources Comparisons across populations must take are important in these efforts. these factors into account. Ideally, comparisons ■ Policy frameworks and agreed principles should adjust the data for differences in certain are set out in the CRPD. methodological effects – such as interviews and ■ Information-related standards are pro- examination surveys – where such adjustments vided by the ICF (24, 25). are soundly based. ■ Attempts to harmonize and standard- A primary goal of collecting population ize question sets for assessment of health data on people with disabilities is to iden- status and disability at population level tify strategies to improve their well-being. are in progress (see Technical appendix B Comprehensive and systematic documentation for information on European Statistical of all aspects of functioning of the popula- System, United Nations Washington Group tion can support the design and monitoring of on Disability Statistics, United Nations interventions. For instance, such data would Economic and Social Commission for enable policy-makers to assess the poten- Asia and the Pacific (UNESCAP), WHO tial benefit of assistance programmes to help Regional Office for the Americas/Pan people with mobility limitations get to work or American Health Organization/Budapest to assess interventions to reduce depression (2). Initiative). Data on prevalence and need should be popu- ■ A training manual on disability statistics, lation-based and relevant to policy, but at the prepared by WHO and UNESCAP, pro- same time not dependent on policy. If data are vides useful guidance on how countries dependent on policy, estimated prevalence rates can enhance their national statistics (26). can suddenly change if, for example, the benefit system changed and people switched from an unemployment benefit to a disability benefit. Prevalence of disability – With population data and administrative and difficulties in functioning service data based on the same basic concepts and frameworks, a strong integrated national In examining the prevalence of disability in information database can be developed. the world today, this Report presents country- International standards on data and stand- reported estimates of disability prevalence, as ardized question sets can improve harmoniza- well as prevalence estimates based on two large tion across the various approaches. There have data sources: the WHO World Health Survey of been attempts in recent years to standardize 2002–2004, from 59 countries, and the WHO 24 Chapter 2 Disability – a global picture Global Burden of Disease study, 2004 update. disability. So the prevalence estimates presented These sources can be used to examine the preva- here should be taken not as definitive but as lence of disability, but they are not directly com- reflecting current knowledge and available data. parable because they use different approaches to estimating and measuring disability. Estimates based on the WHO World Health Survey Country-reported The World Health Survey, a face-to-face house- disability prevalence hold survey in 2002–2004, is the largest multi- national health and disability survey ever using More countries have been collecting preva- a single set of questions and consistent methods lence data on disability through censuses and to collect comparable health data across coun- surveys, with many having moved from an tries. The conceptual framework and func- “impairment” approach to a “difficulties in tioning domains for the World Health Survey functioning” approach. Estimated prevalence came from the ICF (24, 32). The questionnaire rates vary widely across and within countries covered the health of individuals in various (2, 11, 27). Box  2.1 shows variations between domains, health system responsiveness, house- two sources of disability data in Ireland. hold expenditures, and living conditions (33). Technical appendix A gives an idea of the varia- A total of 70 countries were surveyed, of which tion across countries in conceptual framework, 59 countries, representing 64% of the world method, and prevalence – from under 1% of the population, had weighted data sets that were population to over 30% – and illustrates the dif- used for estimating the prevalence of disability ficulties surrounding the comparison of exist- of the world’s adult population aged 18 years ing national data sets. As discussed previously, and older (33). The countries in the survey were most developing countries report disability chosen based on several considerations: prevalence rates below those reported in many ■ the need to fill data gaps in geographical developed countries, because they collect data regions where data were most lacking, such on a narrow set of impairments, which yield as sub-Saharan Africa; lower disability prevalence estimates. ■ a spread of countries that would include A growing number of countries are using high-income, middle-income, and low- the ICF framework and related question sets income countries with a focus on low- in their national surveys and censuses (5–8, income and middle-income countries; 28–30). Experience in Zambia that makes use ■ inclusion of countries with large adult of the Washington Group’s six questions for populations. census is outlined in Box 2.2. These efforts by countries – together with global and regional The samples were drawn from each coun- initiatives (see technical appendices A and B for try’s sampling frame at the time of the World details) – will eventually lead to more stand- Health Survey, using a stratified, multistage ardized and thus more comparable estimates of cluster. The survey used a consistent conceptual country disability prevalence. framework to identify measurement domains. The choice of domains to include in the Global estimates of World Health Survey was informed by analy- disability prevalence sis of WHO’s MultiCountry Survey Study (MCSS). To arrive at the most parsimonious set The two sources of statistical information to esti- of domains that would explain most of the vari- mate global disability prevalence in this Report, ance in the valuation of health and functioning, the World Health Survey and the Global Burden the domains of affect, cognition, interpersonal of Disease, both have limitations with regard to relationships, mobility, pain, sleep and energy, 25 World report on disability self-care, and vision were included. Although difficulty, mild difficulty, moderate difficulty, hearing impairment is the most common of severe difficulty, and extreme difficulty. These sensory impairments and markedly increases were scored, and a composite disability score cal- with age, reporting biases in general popula- culated, ranging from 0 to 100, where 0 represented tion surveys, low-endorsement rates in the “no disability” and 100 was “complete disability”. general population, and the domain of hear- This process produced a continuous score range. ing not contributing significantly to explaining To divide the population into “disabled” and the variance led to this domain being dropped “not disabled” groups it was necessary to create a from the World Health Survey (15, 34). threshold value (cut-off point). A threshold of 40 Possible self-reported responses to the ques- on the scale 0–100 was set to include within esti- tions on difficulties in functioning included: no mates of disability, those experiencing significant Box 2.2. Using the Washington Group questions to understand disability in Zambia The Washington Group on Disability Statistics was set up by the United Nations Statistical Commission in 2001 as an international, consultative group of experts to facilitate the measurement of disability and the comparison of data on disability across countries. The Washington Group applies an ICF-based approach to disability and follows the principles and practices of national statistical agencies as defined by the United Nations Statistical Commission. Its questions cover six functional domains or basic actions: seeing, hearing, mobility, cognition, self-care, and communication. The questions asking about difficulties in performing certain activities because of a health problem are as follows. 1. Do you have difficulty seeing, even if wearing glasses? 2. Do you have difficulty hearing, even if using a hearing aid? 3. Do you have difficulty walking or climbing steps? 4. Do you have difficulty remembering or concentrating? 5. Do you have difficulty with self-care, such as washing all over or dressing? 6. Using your usual (customary) language, do you have difficulty communicating (for example, understanding or being understood by others)? Each question has four types of response, designed to capture the full spectrum of functioning, from mild to severe: no difficulty, some difficulty, a lot of difficulty and unable to do it at all. This set of Washington Group questions was included in a 2006 survey of living conditions in Zambia. They had screened people with conditions, which had lasted or were expected to last for six months or more. The prevalence of difficulty in each of the six domains could be calculated from the responses (see table below). Prevalence of disability by domain and degree of difficulty, Zambia 2006 Core domains Degree of difficulty At least some difficulty (%) At least a lot of difficulty (%) Unable to do it at all (%) Seeing 4.7 2.6 0.5 Hearing 3.7 2.3 0.5 Mobility 5.1 3.8 0.8 Cognition 2.0 1.5 0.3 Self-care 2.0 1.3 0.4   Communication 2.1 1.4 0.5 Note: n = 28 010; 179 missing. Source (31). continues ... 26 Chapter 2 Disability – a global picture ... continued Within each degree of difficulty, problems encountered with mobility were the most prevalent, followed by seeing and hearing difficulties. The results in the table were not mutually exclusive, and many individuals had a disability that covered more than one domain. Measures that reflect the multidimensionality of disability, constructed from the results of the Washington Group questions, are in the table below. Measures reflecting multidimensionality of disability, Zambia 2006 Number Percent At least one domain is scored “some difficulty” (or higher) 4053 14.5 At least one domain is scored “a lot of difficulty” (or higher). This measure excludes those 2368 8.5 with the mildest degrees of difficulty. At least one domain is scored “cannot do it at all”. This measure focuses on the most 673 2.4 severe levels of difficulty. More than one domain is scored “some difficulty” (or higher). This measure focuses on 1718 6.1   difficulties with multiple actions. Note: n = 28 010. Source (31). As in the first table, higher prevalence rates are associated with definitions of disability that include milder or lesser degrees of difficulty. The relatively low overall prevalence rates for disability reported in many low-income countries (such as the figure of 2.7% in Zambia in 2000) may correspond more closely to rates of severe disability in these countries. difficulties in their everyday lives. A threshold of These estimates do not directly indicate the 50 was set to estimate the prevalence of persons need for specific services. Estimating the size experiencing very significant difficulties. A full of the target group for services requires more account of the survey method and the process of specific information about the aims of services setting the threshold is in Technical appendix C. and the domain and extent of disability. Across all 59 countries the average preva- Across all countries, vulnerable groups lence rate in the adult population aged 18 years such as women, those in the poorest wealth and over derived from the World Health Survey quintile, and older people had higher preva- was 15.6% (some 650 million people of the esti- lences of disability. For all these groups the mated 4.2 billion adults aged 18 and older in rate was higher in developing countries. The 2004 (35)) (see Table  2.1) ranging from 11.8% prevalence of disability in lower income coun- in higher income countries to 18.0% in lower tries among people aged 60 years and above, for income countries. This figure refers to adults who instance, was 43.4%, compared with 29.5% in experienced significant functioning difficulties higher income countries. in their everyday lives (see Technical appendix Several limitations or uncertainties sur- C). The average prevalence rate for adults with rounding the World Health Survey data, very significant difficulties was estimated at described further in Technical appendix C, 2.2% or about 92 million people in 2004. need to be noted. These include the valid debate If the prevalence figures are extrapolated regarding how best to set the threshold for to cover adults 15 years and older, around 720 disability, and the still unexplained variations million people have difficulties in functioning across countries in self-reported difficulties with around 100 million experiencing very sig- in functioning, and the influence of cultural nificant difficulties. differences in expectations about functional 27 World report on disability Table 2.1. Disability prevalence rates for thresholds 40 and 50 derived from multidomain functioning levels in 59 countries, by country income level, sex, age, place of residence, and wealth Population Threshold of 40 Threshold of 50 subgroup Higher Lower All countries Higher income Lower income All countries income income (standard countries countries (standard countries countries error) (standard (standard error) (standard (standard error) error) error) error) Sex Male 9.1 (0.32) 13.8 (0.22) 12.0 (0.18) 1.0 (0.09) 1.7 (0.07) 1.4 (0.06) Female 14.4 (0.32) 22.1 (0.24) 19.2 (0.19) 1.8 (0.10) 3.3 (0.10) 2.7 (0.07) Age group 18–49 6.4 (0.27) 10.4 (0.20) 8.9 (0.16) 0.5 (0.06) 0.8 (0.04) 0.7 (0.03) 50–59 15.9 (0.63) 23.4 (0.48) 20.6 (0.38) 1.7 (0.23) 2.7 (0.19) 2.4 (0.14) 60 and over 29.5 (0.66) 43.4 (0.47) 38.1 (0.38) 4.4 (0.25) 9.1 (0.27) 7.4 (0.19) Place of residence Urban 11.3 (0.29) 16.5 (0.25) 14.6 (0.19) 1.2 (0.08) 2.2 (0.09) 2.0 (0.07) Rural 12.3 (0.34) 18.6 (0.24) 16.4 (0.19) 1.7 (0.13) 2.6 (0.08) 2.3 (0.07) Wealth quintile Q1(poorest) 17.6 (0.58) 22.4 (0.36) 20.7 (0.31) 2.4 (0.22) 3.6 (0.13) 3.2 (0.11) Q2 13.2 (0.46) 19.7 (0.31) 17.4 (0.25) 1.8 (0.19) 2.5 (0.11) 2.3 (0.10) Q3 11.6 (0.44) 18.3 (0.30) 15.9 (0.25) 1.1 (0.14) 2.1 (0.11) 1.8 (0.09) Q4 8.8 (0.36) 16.2 (0.27) 13.6 (0.22) 0.8 (0.08) 2.3 (0.11) 1.7 (0.08) Q5(richest) 6.5 (0.35) 13.3 (0.25) 11.0 (0.20) 0.5 (0.07) 1.6 (0.09) 1.2 (0.07)   Total 11.8 (0.24) 18.0 (0.19) 15.6 (0.15) 2.0 (0.13) 2.3 (0.09) 2.2 (0.07) Note: Prevalence rates are standardized for age and sex. Countries are divided between low-income and high-income according to their 2004 gross national income (GNI) per capita (36). The dividing point is a GNI of US$ 3255. Source (37). requirements and other environmental fac- In response to criticisms of disability- tors, which the statistical methods could not adjusted life-years (DALYs) in the original adjust for. Global Burden of Disease study (10, 40–42), the concept has been further developed – for exam- Estimates based on the WHO ple, the use of population-based health state Global Burden of Disease study valuations in preference to expert opinion and The second set of estimates of the global dis- better methods for cross-national comparabil- ability prevalence is derived from the Global ity of survey data on health states (43, 44). The Burden of Disease study, 2004 update. The first disability weights – years lived with disability Global Burden of Disease study was commis- (YLD) – used in the DALYs attempt to quantify sioned in 1990 by the World Bank to assess the the functional status of individuals in terms of relative burden of premature mortality and their capacities and ignore environmental fac- disability from different diseases, injuries, and tors. The YLD uses a set of core health domains risk factors (38, 39). including mobility, dexterity, affect, pain, cog- nition, vision, and hearing. 28 Chapter 2 Disability – a global picture In recent years the WHO has reassessed the estimates, the World Health Survey and Global Global Burden of Disease for 2000–2004, drawing Burden of Disease results based on very differ- on available data sources to produce estimates ent measurement approaches and assumptions, of incidence, prevalence, severity, duration, and give global prevalence estimates among the mortality for more than 130 health conditions for adult population of 15.6% and 19.4% respec- 17 subregions of the world (45, 46). The Global tively. The World Health Survey gives the preva- Burden of Disease study starts with the preva- lence of adults with very significant difficulties lence of diseases and injuries and distributions of in functioning at 2.2%, while the Global Burden limitations in functioning – where available – in of Disease data indicate that 3.8% of the adult different regions of the world, and then estimates population is estimated to have “severe disabil- the severity of related disability (46). ity” – the equivalent of disability inferred for The analysis of the Global Burden of Disease conditions such as quadriplegia, severe depres- 2004 data for this Report estimates that 15.3% sion, or blindness. of the world population (some 978 million Based on 2010 population estimates – 6.9 people of the estimated 6.4 billion in 2004 (35)) billion with 5.04 billion 15 years and over and had “moderate or severe disability”, while 2.9% 1.86 billion under 15 years – and 2004 disability or about 185 million experienced “severe dis- prevalence estimates (World Health Survey and ability” (see Table 2.2). Among those aged 0–14 Global Burden of Disease) there were around years, the figures were 5.1% and 0.7%, or 93 785 (15.6%) to 975 (19.4%) million persons 15 million and 13 million children, respectively. years and older living with disability. Of these, Among those 15 years and older, the figures around 110 (2.2%) to 190 (3.8%) million expe- were 19.4% and 3.8%, or 892 million and 175 rienced significant difficulties in functioning. million, respectively. Including children, over a billion people (or The Global Burden of Disease study has about 15% of the world’s population) were esti- given considerable attention to the internal con- mated to be living with disability. sistency and comparability of estimates across This is higher than WHO estimates from populations for specific diseases and causes of the 1970s, which suggested a global prevalence injury, severity, and distributions of limitations of around 10% (47). The World Health Survey in functioning. But it is not appropriate to infer estimate includes respondents who reported the overall picture of disability from health con- significant difficulties in everyday function- ditions and impairments alone. There is sub- ing. Against this, the Global Burden of Disease stantial uncertainty about the Global Burden estimates result from setting a cut-off based on of Disease estimates – particularly for regions average disability weights that corresponds to of the world and for conditions where the data the disability weights for typical health states are scarce or of poor quality – and about assess- associated with such conditions as low vision, ments of the average severity of related dis- arthritis, and angina. From these two sources, ability, whether based on published studies or only the Global Burden of Disease provides data expert opinion (see Technical appendix D). on prevalence of disability in children – see the section below on factors affecting disability About the prevalence estimates prevalence for a broader discussion on child- National survey and census data cannot be com- hood disability. pared directly with the World Health Survey or The overall prevalence rates from both Global Burden of Disease estimates, because the World Health Survey and Global Burden of there is no consistent approach across countries Disease analyses are determined by the thresh- to disability definitions and survey questions. olds chosen for disability. Different choices of In 2004, the latest year for which data are thresholds result in different overall prevalence available from surveys and burden of disease rates, even if fairly similar approaches are used 29 World report on disability Table 2.2. Estimated prevalence of moderate and severe disability, by region, sex, and age, Global Burden of Disease estimates for 2004 Sex/age group Percent World High- Low-income and middle-income countries, WHO region income African Americas South- European Eastern Western countries East Mediterranean Pacific Asia Severe disability Males 0–14 years 0.7 0.4 1.2 0.7 0.7 0.9 0.9 0.5 15–59 years 2.6 2.2 3.3 2.6 2.7 2.8 2.9 2.4 ≥ 60 years 9.8 7.9 15.7 9.2 11.9 7.3 11.8 9.8 Females 0–14 years 0.7 0.4 1.2 0.6 0.7 0.8 0.8 0.5 15–59 years 2.8 2.5 3.3 2.6 3.1 2.7 3.0 2.4 ≥ 60 years 10.5 9.0 17.9 9.2 13.2 7.2 13.0 10.3 All people 0–14 years 0.7 0.4 1.2 0.6 0.7 0.8 0.9 0.5 15–59 years 2.7 2.3 3.3 2.6 2.9 2.7 3.0 2.4 ≥ 60 years 10.2 8.5 16.9 9.2 12.6 7.2 12.4 10.0 ≥ 15 years 3.8 3.8 4.5 3.4 4.0 3.6 3.9 3.4 All ages 2.9 3.2 3.1 2.6 2.9 3.0 2.8 2.7 Moderate and severe disability Males 0–14 years 5.2 2.9 6.4 4.6 5.3 4.4 5.3 5.4 15–59 years 14.2 12.3 16.4 14.3 14.8 14.9 13.7 14.0 ≥ 60 years 45.9 36.1 52.1 45.1 57.5 41.9 53.1 46.4 Females 0–14 years 5.0 2.8 6.5 4.3 5.2 4.0 5.2 5.2 15–59 years 15.7 12.6 21.6 14.9 18.0 13.7 17.3 13.3 ≥ 60 years 46.3 37.4 54.3 43.6 60.1 41.1 54.4 47.0 All people 0–14 years 5.1 2.8 6.4 4.5 5.2 4.2 5.2 5.3 15–59 years 14.9 12.4 19.1 14.6 16.3 14.3 15.5 13.7 ≥ 60 years 46.1 36.8 53.3 44.3 58.8 41.4 53.7 46.7 ≥ 15 years 19.4 18.3 22.0 18.3 21.1 19.5 19.1 18.1   All ages 15.3 15.4 15.3 14.1 16.0 16.4 14.0 15.0 Note: High-income countries are those with a 2004 gross national income (GNI) per capita of US$ 10 066 or more in 2004, as estimated by the World Bank. Low-income and middle-income countries are grouped according to WHO region and are those with a 2004 GNI per capita of less than US$ 10 066 in 2004, as estimated by the World Bank. Severe disability com- prises classes VI and VII, moderate and severe disability, classes III and above. Source (36). 30 Chapter 2 Disability – a global picture in setting the threshold. This methodological Fig. 2.1. Global disability prevalence estimates point needs to be borne in mind when consid- from different sources ering these new estimates of global prevalence. The World Health Survey and Global Burden 30 of Disease results appear reasonably similar in 25 Fig.  2.1, which shows average prevalence for countries by income band. But the sex ratio 20 Prevalence (%) for disability differs greatly between the World Health Survey and the Global Burden of Disease 15 (see Table  2.1 and Table  2.2). At the global 10 level, the Global Burden of Disease estimates of moderate and severe disability prevalence are 5 11% higher for females than males, reflecting 0 somewhat higher age-specific prevalences in WHS Surveys GBD WHS Surveys GBD WHS Surveys GBD WHS Surveys GBD females, but also the greater number of older women in the population than older men. But High-income World Middle-income Low-income the World Health Survey estimates give a female countries countries countries prevalence of disability nearly 60% higher than Note: This figure compares the population-weighted that for males. It is likely that the differences average prevalence of disability for high-income, middle- between females and males in the World Health income, and low-income countries from multiple sources. The solid grey bars show the average prevalence based Survey study result to some extent from differ- on available data, the range lines indicate the 10 th and ences in the use of response categories. 90 th percentiles for available country prevalence within The average prevalences from country sur- each income group. The data used for this figure are veys and censuses, calculated from population- not age standardized and cannot be directly compared weighted average prevalences in Technical with Table 2.1 and Table 2.3. WHS = World Health Survey; appendix A, are much lower in low-income and GBD = the Global Burden of Disease, 2004 update; Surveys = Technical appendix A. middle-income countries than in high-income Sources (37, 46). countries, and much lower than prevalences derived from the World Health Survey or Global While the prevalence data in this Report Burden of Disease (see Fig. 2.1). This probably draw on the best available global data sets, they reflects the fact that most developing countries are not definitive estimates. There is an urgent tend to focus on impairment questions in their need for more robust, comparable, and com- surveys, while some developed country surveys plete data collection. Generally, a better knowl- are more concerned with broader areas of par- edge base is required on the prevalence, nature, ticipation and the need for services. The World and extent of disability—both at a national level Health Survey results show variation across where policies are designed and implemented, countries within each income band, possibly but also in a globally comparable manner, with reflecting cross-country and within-country changes monitored over time. In the quest for differences in the interpretation of categories more reliable and comprehensive national and by people with the same levels of difficulty in international data on disability, the ICF pro- functioning. The variation across countries in vides a common platform for measurement and the Global Burden of Disease results is smaller, data collection. The ICF is neither a measure- but this is due to some extent to the extrapo- ment tool nor a survey instrument, but a clas- lation of country estimates from regional sification that can provide a standard for health analyses. and disability statistics and help in the difficult 31 World report on disability task of harmonizing approaches towards esti- which can contribute to developing an mating disability prevalence. empirical base. Disability prevalence is the result of a com- ■ Estimate the prevalence of health condi- plex and dynamic relationship between health tions and then apportion disability – as conditions and contextual factors, both per- in the synthetic estimates derived from sonal and environmental. the Global Burden of Disease study (see Technical appendix D) (46). Health conditions Trends in health conditions associated with disability The relationship between health conditions and disabilities is complicated. Whether a health A growing body of statistical evidence presents condition, interacting with contextual factors, a complex picture of shifting risk factors for will result in disability is determined by inter- different age and socioeconomic groups, with related factors. a pronounced increase in the prevalence of Often the interaction of several condi- chronic conditions in the general population. tions rather than a single one contributes to Discussed here are trends in three broad cat- the relationship between health conditions egories of health conditions – infectious dis- and disability. Co-morbidity, associated with eases, chronic conditions, and injuries. more severe disability than single conditions, has implications for disability. Also the pres- Infectious diseases ence of multiple health problems can make the Infectious diseases, may create, or be defined management of health care and rehabilitation in terms of impairments. They are estimated to services more difficult (48–50). Chronic health account for 9% of the years lived with disability problems often occur together. For example, in low-income and middle-income countries one chronic physical health condition, such (46). Prominent among them are lymphatic as arthritis, significantly increases the likeli- filariasis, tuberculosis, HIV/AIDS, and other hood of another physical health condition and sexually transmitted diseases. Less prominent mental health conditions (51, 52). So the aspect are diseases with neurological consequences, of disability that may be reported as primarily such as encephalitis (53, 54), meningitis (55, associated with one health condition may often 56), and childhood cluster diseases – such as be related to several coexisting conditions. measles, mumps, and poliomyelitis (57). It is not possible to produce definitive global Some of the trends in significant infectious statistics on the relationship between disability diseases associated with disability: and health conditions. Studies that try to cor- ■ At the end of 2008 an estimated 33.4 mil- relate health conditions and disability without lion people worldwide – about 0.5% of the taking into account environmental effects are world population – were living with HIV. likely to be deficient. Between 2000 and 2008 the number of The evidence suggests that the two main people living with HIV rose by 20%, but the approaches to dealing with disability and asso- annual global incidence of HIV infection ciated health conditions yield different results. is estimated to have declined by 17%. Sub- These approaches: Saharan Africa remains the region most ■ Estimate disability and then look at associ- affected (58). ated health conditions – as in population ■ Malaria is endemic in 109 countries, surveys such as those mentioned under compared with 140 in the 1950s. In 7 the section on noncommunicable diseases, of 45 African countries or territories with smaller populations, malaria cases 32 Chapter 2 Disability – a global picture and deaths fell by at least 50% between problems, hearing disorders, hypertension, 2000 and 2006. In 22 countries in other heart disease, asthma, and vision disorders, regions, malaria cases also fell by at least followed by noise-induced hearing loss, 50% (59). speech problems, diabetes, stroke, depres- ■ Polio cases fell more than 99% in 18 years, sion, and dementia (74). The pattern varied from an estimated 350 000 cases in 1988, to with age and the extent of disability (74). 1604 in 2009 (60). In 2010 only four coun- ■ In Canada, for adults aged 15 years and tries – Afghanistan, India, Nigeria, and over with disabilities, a 2006 study found Pakistan – remain polio-endemic, down that the most common health conditions from more than 125 in 1988 (60, 61). related to disability were arthritis, back ■ The elimination of leprosy, to less than 1 per problems, and hearing disorders. Other 10 000 population, was attained at the global conditions included heart disease, soft level by 2000. At the beginning of 2003 the tissue disorders such as bursitis and fibro- number of leprosy patients in the world was myalgia, affective disorders, asthma, vision around 530 000, as reported by 106 coun- disorders, and diabetes. Among children tries. The number of countries with preva- aged 0–14 years, many of the most common lence rates above 1 per 10 000 population fell health conditions were related to difficul- from 122 in 1985 to 12 in 2002. Brazil, India, ties in learning. They included learning dis- Madagascar, Mozambique, and Nepal are abilities, specifically autism and attention the most endemic countries (62). deficit (with and without hyperactivity), as ■ Trachoma, once endemic in many coun- well as high levels of asthma and hearing tries, is now largely confined to the poorest problems. Other health conditions found population groups in 40 developing coun- in young people included speech problems, tries, affecting about 84 million people, 8 dyslexia, cerebral palsy, vision disorders, million of them visually impaired (63). and congenital abnormalities (75). The prevalence of trachoma-related visual ■ A 2001 OECD study in the United States of impairment has fallen considerably over the top 10 conditions associated with dis- the past two decades due to disease control ability found rheumatism to be the leading and socioeconomic development (64). cause among elderly people, accounting for 30% of adults aged 65 years or older who Noncommunicable chronic diseases reported limitations in their “activities of The increase in diabetes, cardiovascular dis- daily living”. Heart problems were second, eases (heart disease and stroke), mental disor- accounting for 23%. The other main disa- ders, cancer, and respiratory illnesses, observed bling conditions were hypertension, back in all parts of the world, will have a profound or neck problems, diabetes, vision disor- effect on disability (65–73). They are estimated ders, lung and breathing problems, frac- to account for 66.5% of all years lived with tures, stroke, and hearing problems (76). disability in low-income and middle-income countries (46). It is projected that there will continue to be National surveys present a more detailed large increases in non-communicable disease- picture of the types of health conditions asso- related YLDs in rapidly developing regions (65, ciated with disabilities: 77, 78). Several factors help explain the upward ■ In a 1998 population survey in Australia trend: population ageing, reduction in infec- of people (of all ages) with disabilities, the tious conditions, lower fertility, and changing most common disability-related health lifestyles related to tobacco, alcohol, diet, and conditions reported were: arthritis, back physical activity (39, 65, 79, 80). 33 World report on disability Box 2.3. Assistance for people with disabilities in conflict situations Armed conflict generates injuries and trauma that can result in disabilities. For those incurring such injuries, the situation is often exacerbated by delays in obtaining emergency health care and longer-term rehabilitation. In 2009 in Gaza an assessment found such problems as (81): ■ complications and long-term disability from traumatic injuries, from lack of appropriate follow-up; ■ complications and premature mortality in individuals with chronic diseases, as a result of suspended treatment and delayed access to health care; ■ permanent hearing loss caused by explosions, stemming from the lack of early screening and appropriate treatment; ■ long-term mental health problems from the continuing insecurity and the lack of protection. As many as half of the 5000 men, women, and children injured over the first three weeks of the conflict could have permanent impairments, aggravated by the inability of rehabilitation workers to provide early intervention (82). In situations of conflict, those with disabilities are entitled to assistance and protection. Humanitarian organiza- tions do not always respond to the needs of people with disabilities promptly, and gaining access to persons with disabilities who are scattered among affected communities can be difficult. A variety of measures can reduce the vulnerability of persons with disabilities including: ■ effective planning to meet disability needs by humanitarian organizations before crises; ■ assessments of the specific needs of people with disabilities; ■ provisions of appropriate services; ■ referral and follow-up services where necessary. These measures may be carried out directly or through mainstreaming. The needs of families and carers must also be taken into account, both among the displaced population and in the host communities. In emergencies linked to conflicts, the measures need to be flexible and capable of following the target population, adjusting quickly as the situation evolves. following injuries (87). In Belgium a study Injuries using the country’s Official Disability Rating Road traffic injury, occupational injury, vio- Scale (a tool insurance companies use to assess lence, and humanitarian crises have long been disability rates among specific patients) found recognized as contributors to disability (see that 11% of workers injured in a road traffic Box  2.3). However, data on the magnitude crash on their way to or from work sustained of their contribution are very limited. Injury a permanent disability (88). In Sweden 10% of surveillance tends to focus exclusively on near- all car occupants with an Abbreviated Injury term outcomes such as mortality or the acute- Scale of 1 (the lowest injury score) sustained a care consequences of injury (83). For example, permanent impairment (89). between 1.2 million and 1.4 million people die Road traffic injuries are estimated to account every year as a result of road traffic crashes. A for 1.7% of all years lived with disability – vio- further 20 to 50 million more are injured (84– lence and conflict, for an additional 1.4% (46). 86). The number of people disabled as a result of these crashes is not well documented. A recent systematic review of the risk of Demographics disability among motor vehicle drivers sur- viving crashes showed substantial variability Older persons in derived estimates. Prevalence estimates of post-crash disability varied from 2% to 87%, Global ageing has a major influence on disabil- largely a result of the methodological diffi- ity trends. The relationship here is straightfor- culties in measuring the non-fatal outcomes ward: there is higher risk of disability at older 34 Chapter 2 Disability – a global picture Fig. 2.2. Age-specific disability prevalence, derived from multidomain functioning levels in 59 countries, by country income level and sex 70 70 60 60 Total 50 50 Female Prevalence (%) Prevalence (%) 40 40 Low-income countries 30 30 Male 20 20 High-income countries 10 10 0 0 45–54 55–64 65–74 75+ 45–54 55–64 65–74 75+ Age group (years) Age group (years) Source (37). ages, and national populations are ageing at under way in high-income nations, and pro- unprecedented rates. jected to become more marked across the globe Higher disability rates among older people throughout the 21st century (see Table 2.3) (90, reflect an accumulation of health risks across a 99, 100). lifespan of disease, injury, and chronic illness Studies report contradictory trends in the (74). The disability prevalence among people prevalence of disability among older age groups 45 years and older in low-income countries in some countries, but the growing proportions is higher than in high-income countries, and of older people in national populations and the higher among women than among men. increased numbers of the “oldest old” most at Older people are disproportionately repre- risk of disability are well documented (76, 101). sented in disability populations (see Fig.  2.2). The Organisation for Economic Co-operation They make up 10.7% of the general population and Development (OECD) has concluded that of Australia and 35.2% of Australians with dis- it would be unwise for policy-makers to expect abilities (29). In Sri Lanka, 6.6% of the general population are 65 years or older represent- Fig. 2.3. Distribution of ages within disability ing 22.5% of people with disabilities. Rates of populations disability are much higher among those aged 80 to 89 years, the fastest-growing age cohort Percentage of disability population 64.8 60.2 45.7 63.9 66.6 81.4 77.5 64.4 worldwide, increasing at 3.9% a year (90) and projected to account for 20% of the global population 60 years or older by 2050 (91). See Fig.  2.3 for the contribution of ageing to the 54.3 disability prevalence in selected countries. 35.2 39.8 36.1 33.4 35.6 The ageing population in many countries 22.5 18.6 is associated with higher rates of survival to an older age and reduced fertility (99). Despite Ireland New Zealand Australia 2003 Canada 2006 Germany 2007 2006 2006 2001 Sri Lanka 2001 USA 2007 South Africa differences between developing and developed nations, median ages are projected to increase markedly in all countries (99). This is an histor- < 65 years ≥ 65 years ically important demographic transition, well Sources (5, 92–98). 35 World report on disability Table 2.3. Global ageing trends: median age by country income Country income level Median Age (years) 1950 1975 2005 2050 High-income countries 29.0 31.1 38.6 45.7 Middle-income countries 21.8 19.6 26.6 39.4 Low-income countries 19.5 17.6 19.0 27.9   World 23.9 22.4 28.0 38.1 Note: Middle estimate. Source (91). that reductions in severe disability among older social-emotional development (105). Children people will offset increased demands for long- screening positive for increased risk of dis- term care (76). ability are less likely to have been breastfed or to have received a vitamin A supplement. As Children the severity of stunting and being underweight increases, so does the proportion of children Estimates of the prevalence of children with dis- screening positive for risk of disability (106). abilities vary substantially depending on the def- An estimated 200 million children under age inition and measure of disability. As presented 5 fail to reach their potential in cognitive and above, the Global Burden of Disease estimates social-emotional development (105). the number of children aged 0–14 years expe- In its Multiple Indicator Cluster Surveys riencing “moderate or severe disability” at 93 (MICS), for ages 2–9, UNICEF used 10 ques- million (5.1%), with 13 million (0.7%) children tions to screen children for risk of disability experiencing severe difficulties (46). In 2005 the (106). These studies were found to lead to a large United Nations Children’s Fund (UNICEF) esti- number of false positives – an overestimate of mated the number of children with disabilities the prevalence of disability (107). Clinical and under age 18 at 150 million (102). A recent review diagnostic evaluation of children who screen of the literature in low- and middle-income positive is required to obtain more definitive countries reports child disability prevalence data on the prevalence of child disability. The from 0.4% to 12.7% depending on the study and MICS were administered in 19 languages to assessment tool (103). A review in low-income more than 200 000 children in 20 participating countries pointed to the problems in identifying countries. Between 14% and 35% of children and characterizing disability as a result of the screened positive for risk of disability in most lack of cultural and language-specific tools for countries. Some authors argue that the screen- assessment (104). This may account in part for ing was less able to identify children at risk of the variation in prevalence figures and suggests disabilities related to mental health conditions that children with disabilities are not being (108, 109). Also data from selected countries identified or receiving needed services. indicated that children in ethnic minority The functioning of a child should be seen groups were more likely than other children not in isolation but in the context of the family to screen positive for disability. There was also and the social environment. Children under evidence of regional variation within countries. age 5 in developing countries are exposed to Children who screened positive for increased multiple risks, including poverty, malnutrition, risk of disability were also more likely than poor health, and unstimulating home environ- others: ments, which can impair cognitive, motor, and ■ to come from poorer households; 36 Chapter 2 Disability – a global picture ■ to face discrimination and restricted access often associated with other social phenomena to social services, including early-child- such as poverty, which also represents a risk for hood education; disability (see Table 2.4) (80). ■ to be underweight and have stunted growth; People’s environments have a huge effect on ■ to be subject to severe physical punishment the prevalence and extent of disability. Major from their parents (106). environmental changes, such as those caused by natural disasters or conflict situations, will also affect the prevalence of disability not only The environment by changing impairments but also by creating barriers in the physical environment. By con- The effects of environmental factors on disabil- trast, campaigns to change negative attitudes ity are complex. towards persons with disabilities and large- scale changes to improve accessibility in the Health conditions are affected transport system or to public infrastructure by environmental factors will reduce barriers to activities and participa- tion for many persons with disabilities. Other For some environmental factors such as low environmental changes include assistance pro- birth weight and a lack of essential dietary vided by another person or an adapted or spe- nutrients, such as iodine or folic acid, the impact cially designed tool, device, or vehicle, or any on the incidence and prevalence of health con- form of environmental modification to a room, ditions associated with disability is well estab- home, or workplace. lished in the epidemiological literature (106, Measuring these interactions can provide 110, 111). But the picture differs greatly because useful information on whether to target the exposure to poor sanitation, malnutrition, and individual (providing an assistive device), the a lack of access to health care (say, for immuni- society (implementing anti-discrimination zation) are all highly variable around the world, laws), or both (see Box 2.4) (118). Table 2.4. Selected risk trends in selected countries Country Access to adequate Households consum- Infants with low birth One-year-olds with sanitation (%) ing iodine (%)a weight (%)a DTP immunization (%)b 1990 2006 1992– 1998–2005 1990–1994 1998–2005 1997–1999 2005 1996 Argentina 81 91 90 90c 7 8 86 90 Bangladesh 26 36 44 70 50 36 69 96 China 48 65 51 93 9 4 85 95 Egypt 50 66 0 78 10 12 94 98 Ghana 6 10 10 28 7 16 72 88 Iran 83 – 82 94 9 7c 100 97 Mexico 56 81 87 91 8 8 87 99   Thailand 78 96 50 63 13 9 97 99 a. Data refer to the most recent year available during the period specified in the column heading. b. DTP = Diphtheria, tetanus, and pertussis. c. Data refer to years or periods other than those specified in the column heading, differ from the standard definition, or refer to only part of a country. Sources (112–115). 37 World report on disability Box 2.4. Measuring the effect of environment on disability The ICF model of disability provides a tool for measuring the effect of changes in the environment on the preva- lence and severity of disability. It uses capacity and performance to assess the influence of the environment on disability. These constructs are as follows: ■ Capacity indicates what a person can do in a standardized environment, often a clinical setting, without the barriers or facilitators of the person’s usual environment; ■ Performance indicates what a person does in the current or usual environment, with all barriers and facilitators in place. Using these notions provides one way of identifying the effect of the environment and judging how a person’s performance might be improved by modifying the environment. Data were collected from a range of settings (research, primary care, rehabilitation) in the Czech Republic, Germany, Italy, Slovenia, and Spain on 1200 individuals with bipolar disorder, depression, low back pain, migraine, multiple sclerosis, other musculoskeletal conditions (including chronic widespread pain, rheumatoid arthritis and osteoarthritis), osteoporosis, Parkinson disease, stroke, or traumatic brain injury (116). Participants were rated on a five-point scale by interviewers using the ICF checklist recording levels of problems across all dimensions (117). Activity and participation items were scored using both the capacity and the performance constructs. Data were reported using a 0–100 score, with higher scores representing greater difficulties, and a composite score was created (see accompanying figure). Mean and 95% confidence interval of the overall scores of capacity and performance in selected health conditions. 100 Mean score and 95% confidence interval Capacity Performance 80 60 40 20 0 Osteoporosis Traumatic Multiple Bipolar Low back Migraine Other Parkinson’s Depression Stroke brain sclerosis disorder pain musculo- disease injury skeletal Note: Score 0 = no problems; score 100 = maximum problems. The data in Box Fig. 1 should be taken not as necessarily representative of these conditions at large, but as an indication that a consistent conceptual framework can be applied in clinical settings to a wide range of health conditions. Source (116). Capacity scores were worst in people with stroke, depression, and Parkinson disease, while individuals with osteoporosis had the fewest limitations. Performance scores tended to be better than capacity scores, except for individuals with bipolar disorder or traumatic brain injury. This suggests that most individuals had supportive environments that promoted their functioning at or above the level of their intrinsic ability – something that applied particularly for multiple sclerosis and Parkinson disease. For people with conditions such as bipolar disorder and traumatic brain injury, the environmental factors hindered optimal performance. The data suggest that it is possible in clinical settings to disentangle aspects of disability that are particular to the individual (the capacity score) from the effects of a person’s physical environment (the difference between capacity and performance). 38 Chapter 2 Disability – a global picture Disability and poverty onset of disability, and continue to fall with the duration of disability – indicating that people Empirical evidence on the relation between left the workforce early if they became disa- disability and poverty in its various dimen- bled. Average income fell sharply with onset, sions (income and non-income) differs greatly but recovered subsequently, though not to pre- between developed and developing countries disability levels (131). with most of the evidence from developed Some studies have attempted to estimate countries. But longitudinal data sets to estab- poverty rates among households with disability lish the causal relation between disability and taking into account the extra cost of living with poverty are seldom available, even in developed disabilities. A United Kingdom study found countries. that in the late 1990s, the poverty rate among households with disabled people, depending Developed countries on the assumptions used, was 20% to 44% higher after equalizing for disability (using 60% Persons with disabilities experience worse edu- median income threshold) (124). cational and labour market outcomes and are more likely to be poor than persons without dis- Developing countries abilities (119–129). A 2009 OECD study cover- ing 21 upper-middle and high-income countries Quantitative research on the socioeconomic shows higher poverty rates among working-age status of persons with disabilities in develop- people with disabilities than among working-age ing countries, while small, has recently grown. people without disability in all but three coun- As with developed countries, descriptive data tries (Norway, Slovakia, and Sweden) (130). The suggest that persons with disabilities are at a relative poverty risk (poverty rate of working-age disadvantage in educational attainment and disabled relative to that of working-age non-disa- labour market outcomes. The evidence is less bled people) was shown to be the highest – more conclusive for poverty status measured by asset than two times higher – in Australia, Ireland, ownership, living conditions, and income and and the Republic of Korea, and the lowest – only consumption expenditures. slightly higher than for nondisabled people – in The majority of studies find that persons Iceland, Mexico, and the Netherlands. Working- with disability have lower employment rates age people with disabilities were found to be twice and lower educational attainment than per- as likely to be unemployed. When employed, they sons without disability (31, 132–143). In Chile are more likely to work part-time. And unless and Uruguay the situation is better for younger they were highly educated and have a job, they persons with disabilities than older cohorts, had low incomes. as younger cohorts may have better access to Most studies provide a snapshot of the education, through the allocation of additional labour market outcomes and poverty situation resources (133). Most of the cross-section data of working-age persons with disabilities. Few for education suggests that children with dis- studies provide information about people’s abilities tend to have lower school attendance socioeconomic status before the onset of dis- rates (30, 31, 133–136, 139, 142–146). ability and what has happened after it. A study An analysis of the World Health Survey data using the British Household Panel Survey for 15 developing countries suggests that house- between 1991 and 1998 found that having less holds with disabled members spend relatively education, or not being in paid work, was a more on health care than households without “selection” factor for disability (131). The study disabled members (for 51 World Health Survey also found that employment rates fell with the countries, see Chapter 3 of this Report) (132). 39 World report on disability A study on Sierra Leone found that households the countries when controls for schooling are with persons with severe or very severe disabili- introduced (144). ties spent on average 1.3 times more on health One study attempted to account for the care than did non-disabled respondents (147). extra cost of disability in poverty estimates in While many studies find that households with two developing countries: Viet Nam and Bosnia disabled members generally have fewer assets and Herzegovina. Before the adjustments, the (31, 132, 134, 139, 143, 146, 147) and worse living overall poverty rate in Viet Nam was 13.5% and conditions compared with households without the poverty rate among households with dis- a disabled member (134, 139, 146) some stud- ability was 16.4%. The extra cost of disability ies found no significant difference in assets (30, was estimated at 9.0% resulting in an increase 140) or living conditions (30, 31). in the poverty rate among households with dis- Data for income and household consump- ability to 20.1% and in the overall poverty rate tion expenditures are less conclusive. For to 15.7%. In Bosnia and Herzegovina the overall example households with disabilities in Malawi poverty rate was estimated at 19.5% and among and Namibia have lower incomes (139, 146) households with disability at 21.2%. The extra while households in Sierra Leone, Zambia, and cost of disability was estimated at 14%, result- Zimbabwe do not (30, 31, 147). In South Africa ing in an increase in the poverty rate among research suggests that, as a result of the pro- households with disability to 30.8% and in the vision of disability grants, households with a overall poverty rate to 22.4% (148). disabled member in the Eastern Cape Province Very few studies have looked at the preva- had higher income than households without a lence of disability among the poor, or across disabled member (136). the distribution of a particular welfare indica- Evidence on poverty as measured by tor (income, consumption, assets), or across per capita consumption expenditures is also education status. A study of 20 countries found mixed. An analysis of 14 household surveys in that children in the poorest three quintiles of 13 developing countries found that adults with households in most countries are at greater risk disabilities as a group were poorer than average of disability than the others (106). Disability households (144). However, a study of 15 devel- across expenditure and asset quintiles in 15 oping countries, using World Health Survey developing countries, using several disability data, found that households with disabilities measures suggests higher prevalence in lower experienced higher poverty as measured by quintiles, but the difference is statistically sig- nonhealth per capita consumption expendi- nificant in only a few countries (132). tures in only 5 of the countries (132). Data in developing countries on whether having a disability increases the probability Needs for services of being poor are mixed. In Uruguay disabil- and assistance ity has no significant effect on the probability of being poor except in households headed by People with disabilities may require a range of severely disabled persons. By contrast, in Chile services – from relatively minor and inexpen- disability is found to increase the probability sive interventions to complex and costly ones. of being poor by 3–4 percent (133). In a cross- Data on the needs – both met and unmet – are country study of 13 developing countries dis- important for policy and programmes. Unmet ability is associated with a higher probability of needs for support may relate to everyday activi- being poor in most countries – when poverty is ties – such as personal care, access to aids and measured by belonging to the two lowest quin- equipment, participation in education, employ- tiles in household expenditures or asset owner- ment, and social activities, and modifications ship. But this association disappears in most of to the home or workplace. 40 Chapter 2 Disability – a global picture In developed countries, national estimates of The studies revealed large gaps in service need are largely related to specific daily activities, provision for people with disabilities, with rather than to types of service (92, 149–152). In unmet needs particularly high for welfare, Germany, for instance, it is estimated that 2.9% of assistive devices, education, vocational the total population aged 8 years and older has a training, and counselling services (see need for support services. In Sweden this figure has Table 2.5). been estimated at 8.1%, solely in the 15–75 years age ■ In 2006 a national study on disability in group (153). See also Box 2.5 for data on Australia. Morocco estimated the expressed need Several developing countries have con- for improved access to a range of services ducted national studies or representative sur- (160). People with disabilities in the study veys on unmet needs for broad categories of expressed a strong need for better access to services for people with disabilities (159–161). health care services (55.3%), medications Estimates of unmet needs have been included (21.3%), and technical devices (17.5%), and as a subcomponent in some national stud- financial help for basic needs (52.5%). ies on people with disabilities in low-income ■ A 2006 study on unmet needs in Tonga and middle-income countries. The estimate found that 41% of people with disabilities of unmet needs is often based on data from reported a need for medical advice for their a single survey and related to broad service disability – more than twice the proportion programmes such as health, welfare, aids and of people who received such advice (161). equipment, education, and employment. The Some 20% of people with disabilities needed ICF conceptual framework has been used in the physiotherapy, but only 6% received it. definitions of disability in most of the studies. ■ A 2007 national study on rehabilitation ■ In Africa national studies on living condi- needs in China found that about 40% of tions of people with disabilities were con- people with disabilities who needed ser- ducted between 2001 and 2006 in Malawi, vices and assistance received no help. The Namibia, Zambia, and Zimbabwe (159). unmet need for rehabilitation services was Across the four countries the only sector particularly high for aids and equipment, that met more than 50% of reported needs rehabilitation therapy and financial sup- for people with disabilities was health care. port for poor people (162). Box 2.5. Combining sources to better understand need and unmet need – an example from Australia Four special national studies on unmet needs for specific disability support services were conducted in Australia over a recent decade (154–157). These studies relied on a combination of different data sources, especially the national population disability surveys and administrative data collections on disability services (158). The use of the International Classification of Functioning, Disability and Health (ICF) was critical to the success of these studies; first to underpin national data standards, so as to give the maximum comparability of different sets of disability data; and second to create a framework that related data on support needs (the “demand” data from population surveys) to data on the needs for specific types of service (the “supply” data, also known as “registration data”, from disability services). An analysis of these demand and supply data combined provided an estimate of unmet needs for services. Furthermore, because the concepts were stable over time it was possible to update the estimates of unmet needs. For example, the estimate of unmet needs for accommodation and respite services was 26 700 people in 2003 and 23 800 people in 2005, after adjusting for population growth and increases in service supply during the period 2003–2005 (157). The users of accommodation and respite services increased from 53 722 people in 2003–2004 to 57 738 in 2004–2005, an increase of 7.5%. 41 World report on disability Table 2.5. Met and unmet need for services reported by people with a disability, selected developing countries Service Namibia Zimbabwe Malawi Zambia a b a b a b Needed Received Needed Received Needed Received Neededa Receivedb (%) (%) (%) (%) (%) (%) (%) (%) Health services 90.5 72.9 93.7 92.0 83.4 61.0 76.7 79.3 Welfare services 79.5 23.3 76.0 23.6 69.0 5.0 62.6 8.4 Counselling for 67.4 41.7 49.2 45.4 50.5 19.5 47.3 21.9 parent or family Assistive device 67.0 17.3 56.6 36.6 65.1 17.9 57.3 18.4 services Medical 64.6 26.3 68.2 54.8 59.6 23.8 63.2 37.5 rehabilitation Counselling for 64.6 15.2 52.1 40.8 52.7 10.7 51.2 14.3 disabled person Educational 58.1 27.4 43.4 51.2 43.9 20.3 47.0 17.8 services Vocational 47.3 5.2 41.1 22.7 45.0 5.6 35.1 8.4 training   Traditional healer 33.1 46.8 48.9 90.1 57.7 59.7 32.3 62.9 a. Percentage of total number of people with disabilities who expressed a need for the service. b. Percentage of total number of people with disabilities who expressed a need for service who received the service. Sources (30, 31, 139, 146). Costs of disability data from various sources, let alone com- pile national estimates. The economic and social costs of disability ■ There are limited data on the cost compo- are significant, but difficult to quantify. They nents of disability. For instance, reliable include direct and indirect costs, some borne estimates of lost productivity require data by people with disabilities and their families on labour market participation and pro- and friends and employers, and some by soci- ductivity of persons with disabilities across ety. Many of these costs arise because of inac- gender, age, and education levels. cessible environments and could be reduced in ■ There are no commonly agreed methods a more inclusive setting. Knowing the cost of for cost estimation. disability is important not only for making a case for investment, but also for the design of Progress in the technical aspects of disabil- public programmes. ity cost estimates and better data are required Comprehensive estimates of the cost of to achieve reliable national estimates of the disability are scarce and fragmented, even in cost of disability – for example, the cost of developed countries. Many reasons account for productivity losses because of disability, the this situation, including: cost of lost taxes because of non-employment ■ Definitions of disability often vary, across or reduced employment of disabled people, the disciplines, different data collection instru- cost of health care, social protection, and labour ments, and different public programmes for market programmes, and the cost of reasonable disability, making it difficult to compare accommodation. The situation is better for data 42 Chapter 2 Disability – a global picture on public spending on disability benefits in Public spending on disability cash, both contributory (social insurance ben- programmes efits) and non-contributory (social assistance Nearly all countries have some type of public pro- benefits), particularly in developed countries grammes targeted at persons with disabilities, (130). But even for these programmes, consoli- but in poorer countries these are often restricted dated data at the national level are scarce. to those with the most significant difficulties in functioning (165). They include health and reha- Direct costs of disability bilitation services, labour market programmes, vocational education and training, disability Direct costs fall into two categories: additional social insurance (contributory) benefits, social costs that people with disabilities and their assistance (non-contributory) disability benefits families incur to achieve a reasonable standard in cash, provision of assistive devices, subsidized of living, and disability benefits, in cash and in access to transport, subsidized utilities, various kind, paid for by governments and delivered support services including personal assistants through various public programmes. and sign language interpreters, together with administrative overheads. Extra costs of living with disability The cost of all programmes is significant, People with disabilities and their families often but no estimates of the total cost are available. incur additional costs to achieve a standard of For OECD countries an average of 1.2% of GDP living equivalent to that of non-disabled people is spent on contributory and non-contributory (120, 124, 148, 163). This additional spending disability benefits, covering 6% of the work- may go towards health care services, assistive ing age population in 2007 (130). The benefits devices, costlier transportation options, heat- include full and partial disability benefits, as ing, laundry services, special diets, or personal well as early retirement schemes specific to assistance. Researchers have attempted to cal- disability or reduced work capacity. The figure culate these costs by asking disabled people to reaches 2% of GDP when sickness benefits are estimate them by pricing the goods and ser- included, or almost 2.5 times the spending vices that disabled people report they need, by on unemployment benefits. The expenditure comparing actual spending patterns of people is particularly high in the Netherlands and with and without disabilities, and by using Norway (about 5% of GDP). The cost of disabil- econometric techniques (120, 124, 164). ity is around 10% of public social expenditure Several recent studies have attempted to esti- across OECD (up to 25% in some countries). At mate the extra cost of disability. In the United 6% of the working age population in 2007, the Kingdom estimates range from 11% to 69% of disability benefit recipiency rate was similar to income (124). In Australia the estimated costs – the unemployment rate. In some countries it depending on the degree of severity of the disabil- was close to 10%. Both the number of recipi- ity – are between 29% and 37% of income (120). In ents and public spending have risen during Ireland the estimated cost varied from 20% to 37% the last two decades, creating significant fiscal of average weekly income, depending on the dura- concerns about affordability and sustainability tion and severity of disability (164). In Viet Nam, of the programmes and motivating some coun- the estimated extra costs were 9%, and in Bosnia tries, including the Netherlands and Sweden, and Herzegovina 14% (148). While all studies con- to take steps to reduce the disability benefit clude that there are extra costs related to disability, dependency and to foster labour market inclu- there is no technical agreement on how to meas- sion of disabled people (166). ure and estimate them (163). 43 World report on disability Indirect costs There are around 785 (15.6% according to the World Health Survey) to 975 (19.4% accord- Indirect economic and non-economic costs as ing to the Global Burden of Disease) million a result of disability can be wide-ranging and persons 15 years and older living with disabil- substantial. The major components of eco- ity, based on 2010 population estimates (6.9 bil- nomic cost are the loss of productivity from lion with 1.86 billion under 15 years). Of these insufficient investment in educating disabled the World Health Survey estimates that 110 children, and exits from work or reduced work million people (2.2%) have very significant dif- related to the onset of disability, and the loss of ficulties in functioning while the Global Burden taxes related to the loss of productivity. Non- of Disease estimates 190 million (3.8%) have economic costs include social isolation and “severe disability” – the equivalent of disability stress and are difficult to quantify. inferred for conditions such as quadriplegia, An important indirect cost of disability is severe depression, or blindness. Including chil- related to lost labour productivity of persons dren, over a billion people (or about 15% of the with disability and associated loss of taxes. world’s population) were estimated to be living Losses increase when family members leave with disability. employment or reduce the number of hours Disability varies according to a complex worked to care for family members with dis- mix of factors, including age, sex, stage of life, abilities. The lost productivity can result from exposure to environmental risks, socioeco- insufficient accumulation of human capital nomic status, culture and available resources (underinvestment in human capital), from a – all of which vary markedly across locations. lack of employment, or from underemployment. Increasing rates of disability in many places Estimating disability-related loss in pro- are associated with increases in chronic health ductivity and associated taxes is complex and condition – diabetes, cardiovascular diseases, requires statistical information, which is seldom mental disorders, cancer, and respiratory ill- available. For example, it is hard to predict the nesses – and injuries. Global ageing also has productivity that a person who has dropped a major influence on disability trends because out of the labour market because of disabil- there is higher risk of disability at older ages. ity would have if they were working. Hence, The environment has a huge effect on the estimates of the loss of productivity are rare. prevalence and extent of disability, and on the One such estimate, for Canada using data from disadvantage faced by persons with disabilities. the 1998 National Population Health Survey, Persons with disabilities and households with reports disability by type of impairment, age, disabilities experience worse social and eco- and sex as well as the number of days in bed or nomic outcomes compared with persons with- with reduced activity. It suggests that the loss out disabilities. In all settings, disabled people of work through short-term and long-term dis- and their families often incur additional costs ability was 6.7% of GDP (167). to achieve a standard of living equivalent to that of nondisabled people. Because disability is measured on a spec- Conclusion and trum and varies with the environment, preva- recommendations lence rates are related to thresholds and context. Countries requiring estimates of the number of Using multiple surveys from more than 100 people needing income support, daily assistance countries, this chapter has shown that disabil- with activities, or other services will construct ity is a universal experience with economic and their own estimates relevant to local policy. social costs to individuals, families, communi- Although the prevalence data in this ties and nations. Report draw on the best available global data 44 Chapter 2 Disability – a global picture sets, they are not definitive. Considerable and Improve national disability statistics commendable efforts are being made in many countries and by major international agencies At the national level, information about to improve disability data. Nevertheless, data people with disabilities is derived from cen- quality requires further collaborative effort suses, population surveys and administrative and there is an urgent need for more robust, data registries. Decisions on how and when comparable, and complete data collection to collect data depend on the resources avail- especially in developing countries. Improving able. Steps that can be taken to improve dis- disability data may be a long-term enterprise, ability data, prevalence, need and unmet need, but it will provide essential underpinning for and socioeconomic status are outlined below. enhanced functioning of individuals, com- Disaggregating data by sex, age, and income munities and nations. In the quest for more or occupation will provide information about reliable and comprehensive national and inter- subgroups of persons with disabilities, such as national data on disability, the ICF provides a children and older persons. common platform for measurement and data ■ Employ a “difficulties in functioning collection. Improving the quality of informa- approach” instead of an “impairment tion in this way, both nationally and interna- approach” to determine prevalence of disa- tionally, is essential for monitoring progress bility to better capture the extent of disability. in the implementation of the CRPD and in the ■ As a first step national population census achievement of internationally agreed devel- data can be collected in line with recom- opment goals. mendations from the United Nations The following recommendations can con- Washington Group on Disability and the tribute to enhancing the availability and qual- United Nations statistical commission. ity of data on disability. Census data can provide an estimate of prevalence, information on socioeconomic Adopt the ICF situation, and geographical data and be used to identify populations at risk. It can Using the ICF, as a universal framework for also be used to screen respondents to imple- disability data collection related to policy goals ment more detailed follow up surveys. of participation, inclusion, and health will help ■ A cost-effective and efficient approach to create better data design and also ensure that gain comprehensive data on persons with different sources of data relate well to each disabilities is to add disability questions – other. The ICF is neither a measurement tool or a disability module – to existing sample nor a survey instrument – it is a classification surveys such as a national household that can provide a standard for health and dis- survey, national health survey, a general ability statistics and help in the difficult task of social survey or labour force survey. harmonizing approaches across sources of dis- ■ Dedicated disability surveys can be car- ability data. To achieve this, countries can: ried out to gain extensive information on ■ Base definitions and national data stand- disability and functioning – such as preva- ards on the ICF. lence, health conditions associated with ■ Ensure that data collection cover the broad disability, use of and need for services, and array of ICF domains – impairments, other environmental factors, including on activity limitations and participation persons living in institutions and children. restrictions, related health condition, envi- ■ Data on persons with disabilities or those at ronmental factors – even if a minimal set of particular risk of disability, including dis- data items is to be selected. placed persons, can also be collected through specific surveys in humanitarian crises. 45 World report on disability ■ Administrative data collections can pro- would include more work on the various vide information on users, types and approaches for setting thresholds, includ- quantity of services and cost of services. ing sensitivity analyses of the different In mainstream administrative data collec- thresholds and the implications for ser- tions, standard disability identifiers can be vices and policies. included to monitor access to services by ■ Comparable definitions of disability, based people with disabilities. on the ICF, and uniform methods for col- ■ Statistical linkage of various data sets can lecting data on people with disabilities need allow countries to bring together an array to be developed, tested across cultures, and of information on a person from different applied consistently in surveys, censuses time points, while at the same time protect- and administrative data. ing that individual’s confidentiality. These ■ Extended measures of disability should be linkage studies can often be conducted developed and tested that can be incorpo- quickly and at relatively low cost. rated into population surveys, or used as ■ Where resources exist, collect longitudinal supplements to surveys, or as the core of a data that include questions on disability. disability survey as initiated by the United Longitudinal data – the study of cohorts of Nations Washington Group on Disability people and their environments over time Statistics and the Budapest Initiative. – allow researchers and policy-makers to ■ Develop appropriate instruments for meas- understand better the dynamics of dis- uring childhood disability. ability. Such analyses would provide better ■ Improve collaboration and coordina- indications of what happens to individuals tion between various initiatives to and their households after disability onset, measure disability prevalence at global, how their situation is impacted by public regional and national levels (including the policies aimed at improving the social and Budapest Initiative, European Statistical economic status of disabled people, of the Commission, UNESCAP, United Nations causal relationship between poverty and Statistical Commission, Washington disability, and how and when to instigate Group, WHO, United States and Canada). prevention programmes, modify interven- tions, and make environmental changes. Develop appropriate tools and fill the research gaps Improve the comparability of data ■ To improve validity of estimates – further Data gathered at the national level need to be research is needed on different types of comparable at the international level. investigation, such as self-report and pro- ■ Standardize metadata on national disabil- fessional assessment. ity prevalence, for example, by defining the ■ To gain a clearer understanding of people measures of disability, purpose a measure- in their environments and their interac- ment, indicate which aspects of disability tions – better measures of the environment are included, and define the cut-off on the and its impacts on the different aspects of continuum. This will facilitate the compila- disability need to be developed. These will tion of country-reported disability preva- facilitate the identification of cost-effective lence in international data repositories environmental interventions. such as WHO’s Global Health Observatory. ■ To understand the lived experiences of ■ Refine methods of generating prevalence people with disabilities, more qualitative rates using a continuous metric that meas- research is required. Measures of the lived ures multidomain functioning levels. This experience of disability need to be coupled 46 Chapter 2 Disability – a global picture with measurements of the well-being and on disability programmes, including cost– quality of life of people with disabilities. benefit and cost–effectiveness analyses. ■ To better understand the interrelationships and develop a true epidemiology of disabil- Data and information to inform national poli- ity – studies are needed that bring health cies on disability should be sought in a wide condition (including co-morbidity) aspects range of places – including data collected by of disability into a single data set describing statistical agencies, administrative data col- disability, and that explore the interactions lected by government agencies, reports by gov- between health conditions and disability ernment bodies, international organizations, and environmental factors. nongovernmental organizations, and disabled ■ To better understand the costs of disability people’s organizations – in addition to the usual – technical agreement is required on defini- academic journals. 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Paris, Organisation for Economic Co-operation and Development, 2010. 167. The economic burden of illness in Canada, 1998. Ottawa, Health Canada, 2002. 53 Chapter 3 “My doctor is great. He is my friend and not just my doctor. He used to be my father’s doctor too. When I want to see the doctor he always has time for me. He always talks to me about this, about that, before he says, “What is wrong?” I used to be on 60 mg of blood pressure medicine for my high blood pressure. But then my doctor told me that I had to get more life to help my pressure. He did not want me to twiddle my thumbs and watch soap operas seven days a week. He wanted me to move around and be active. It was a good idea. So I went and got some volunteer work. Now I have friends and I always talk to people. And I only need 20 mg of medicine!” Jean-Claude “You can not have a baby”, those were the words of the first gynecologist I visited few months after I got married. I was so confused. Why wouldn’t I be able to have a baby? I am physically disabled, but I have no medical reason not to. I faced a lot of chal- lenges either because of bad attitude of nurses or doctors questioning my eligibility to be a mother or the inaccessible medical facilities, whether it is the entrances, bathrooms, examinations beds etc. I am now a mother of a 5 year old boy which is one of the best things that ever happened to me, but I keep thinking why did it end up to be a luxury thing while it is a right? Why was I only able to do it when I had the money to go to a better medical care system?” Rania “Even though during my appointments to the medical centre, doctors haven’t dis- cussed health promotion with me and they don’t even have a scale to measure my body weight, I still try to engage in activities that would enhance my health and wellbeing. It’s not easy as most fitness facilities and equipment are not accessible. I’m yet to find dietary advice for people with spinal cord injury or identify a dentist near my place of residence with accessible facility and equipment.” Robert 3 General health care Health can be defined as “a state of physical, mental, and social well-being and not merely the absence of disease or infirmity” (1). Good health is a prereq- uisite for participation in a wide range of activities including education and employment. Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabili- ties to attain the highest standard of health care, without discrimination (2). A wide range of factors determine health status, including individual factors, living and working conditions, general socioeconomic, cultural and environmental conditions, and access to health care services (3, 4). This Report shows that many people with disabilities experience worse socioeco- nomic outcomes than people without disabilities: they experience higher rates of poverty, lower employment rates, and have less education. They also have unequal access to health care services and therefore have unmet health care needs compared with the general population (5–8). This chapter focuses on how health systems can address the health ine- qualities experienced by people with disabilities. It provides a broad over- view of their health status, explores the main barriers to using health care, and suggests ways to overcome them. Understanding the health of people with disabilities This section provides a general overview of the health status of people with disabilities by looking at the different types of health conditions they may experience and several factors that may contribute to the health disparities for this population (see Box  3.1). Increasing evidence suggests that, as a group, people with disabilities experience poorer levels of health than the general population (18). They are often described as having a narrower or thinner margin of health (9, 17). Primary health conditions Disability is associated with a diverse range of primary health conditions: some may result in poor health and high health care needs; others do not 57 World report on disability Box 3.1. Terminology Primary health condition A primary health condition is the possible starting point for impairment, an activity limitation, or participation restriction (9). Examples of primary health conditions include depression, arthritis, chronic obstructive pulmonary disease, ischaemic heart disease, cerebral palsy, bipolar disorder, glaucoma, cerebrovascular disease, and Down syndrome. A primary health condition can lead to a wide range of impairments, including mobility, sensory, mental, and communication impairments. Secondary conditions A secondary condition is an additional condition that presupposes the existence of a primary condition. It is distinguished from other health conditions by the lapse in time from the acquisition of the primary condition to the occurrence of the secondary condition (10). Examples include pressure ulcers, urinary tract infections, and depression. Secondary conditions can reduce functioning, lower the quality of life, increase health care costs, and lead to premature mortality (11). Many such conditions are preventable and can be anticipated from primary health conditions (12, 13). Co-morbid conditions A co-morbid condition is an additional condition independent of and unrelated to the primary condition (14). The detection and treatment of co-morbid conditions are often not well managed for people with disabilities and can later have an adverse affect on their health (12): for example, people with intellectual impairments and mental health problems commonly experience “diagnostic overshadowing” (15). Examples of co-morbid condi- tions include cancer or hypertension for a person with an intellectual impairment. General health care needs People with disabilities require health services for general health care needs like the rest of the population. General health needs include health promotion, preventive care (immunization, general health screening), treatment of acute and chronic illness, and appropriate referral for more specialized needs where required. These needs should all be meet through primary health care in addition to secondary and tertiary as relevant. Access to primary health care is particularly important for those who experience a thinner or narrower margin of health to achieve their highest attainable standard of health and functioning (16). Specialist health care needs Some people with disabilities may have a greater need for specialist health care than the general population. Specialist health care needs may be associated with primary, secondary, and co-morbid health conditions. Some people with disabilities may have multiple health conditions, and some health conditions may involve multiple body functions and structures. Assessment and treatment in these instances can be quite complex and therefore may necessitate the knowledge and skills of specialists (17). keep people with disabilities from achieving ■ Adults with chronic conditions such as good health (19). For example: multiple sclerosis, cystic fibrosis, severe ■ A child born blind may not specifically arthritis, or schizophrenia may have com- require ongoing health care for a primary plex and continuing health care needs health condition and associated impair- related to their primary health condition ment (20). or associated impairments (20). ■ An adolescent with a traumatic spinal cord injury may have considerable health care Risk of developing needs during the acute phase of the primary secondary conditions condition but thereafter may require only services to maintain health – for example, Depression is a common secondary condition in to prevent secondary conditions (20). people with disabilities (21–23). Pain has been 58 Chapter 3 General health care reported in children and adults with cerebral may increasingly experience functional loss as palsy (24, 25), children with spina bifida (26), they age (9). and adults with post-polio paralysis (27), neu- romuscular disease (28), and traumatic brain Increased rates of health injury (29). Osteoporosis is common in people risk behaviours with a spinal cord injury (30), spina bifida (31), or cerebral palsy (32, 33). The health behaviours practiced by some adults with disabilities can differ in degree from those Risk of developing co- of the general population (12). In Australia, morbid conditions people with disabilities aged between 15–64 were more likely to be overweight or obese than People with disabilities develop the same health other people (48% compared with 39%) and to problems that affect the general population, smoke daily (3). Data cited from the 2001 and such as influenza and pneumonia. Some may 2003 Behavioural Risk Factor Surveillance be more susceptible to developing chronic con- System in the United States of America reported ditions because of the influence of behavioural similar findings. People with disabilities have risk factors such as increased physical inactiv- higher rates of smoking (30.5% compared with ity (18). They also may experience earlier onset 21.7%), are more likely to be physically inactive of these conditions (17). One study indicated (22.4% compared with 11.9%), and are more that adults with developmental disabilities likely to be obese (31.2% compared with 19.6%) had a similar or greater rate of chronic health (18). A Canadian study using a national sample conditions such as high blood pressure, car- showed that people with hearing impairments diovascular disease, and diabetes than people were more likely than the general popula- without disabilities (34). The prevalence of dia- tion to report low levels of physical activity betes in people with schizophrenia is around (36). A study in Rwanda reported that adults 15%, compared with the general population with lower limb amputations engaged in poor rate of 2–3% (21). health-related behaviours such as smoking, alcohol consumption, recreational drug use, Greater vulnerability to and a lack of exercise (37). age-related conditions Greater risk of being The ageing process for some groups of people exposed to violence with disabilities begins earlier than usual. Some people with developmental disabilities Violence is linked to health outcomes both show signs of premature ageing in their 40s immediate and long term, including injuries, and 50s (35) and they may experience age- physical and mental health problems, sub- related health conditions more frequently. For stance abuse, and death (38). People with disa- example, people with Down syndrome have bilities are at greater risk of violence than those a higher incidence of Alzheimer disease than without disabilities. In the United States vio- the general population, while people with lence against people with disabilities has been intellectual impairments (unrelated to Down reported to be 4–10 times greater than that syndrome) have higher rates of dementia (35). against people without disabilities (39). The The ageing process and associated changes prevalence of sexual abuse against people with (presbycusis, deconditioning, loss of strength disabilities has been shown to be higher (40, and balance, osteoporosis) may have a greater 41), especially for institutionalized men and impact on people with disabilities. For exam- women with intellectual disabilities (42–44), ple, those with existing mobility impairments intimate partners (40, 45), and adolescents (46). 59 World report on disability Higher risk of unintentional injury than people without disabilities in the WHO 2002–2004 World Health Survey (see Table 3.1). People with disabilities are at higher risk of Women seek care more often than men, and so nonfatal unintentional injury from road traf- do respondents with disabilities in high-income fic crashes, burns, falls, and accidents related countries compared with respondents in low- to assistive devices (47–51). One study found income countries across gender and age groups. that children with developmental disabilities – The proportion of respondents seeking care in including autism, attention deficit disorder, and high-income countries increases with age; the attention deficit hyperactivity disorder – were results varied for low-income countries. two to three times more at risk of an injury than Disabled respondents reported not receiv- those without (50). Other studies conclude that ing care more than people without disabilities, children with disabilities have a significantly across both sex and age grouping. Respondents higher risk of falls (52), burn-related injuries with disabilities in low-income countries show (53), and injuries from crashes involving motor higher rates of not receiving care (6.1–6.6) vehicles or bicycles (54). than respondents in high-income countries (3.3–4.6). Age-standardized analysis across all Higher risk of premature death countries suggests that older respondents with disabilities have less unmet care needs than Mortality rates for people with disabilities vary younger (≤ 59) respondents. depending on the health condition. People with Need and unmet needs exist across the schizophrenia and depression have an increased spectrum of health services – promotion, pre- risk of premature death (2.6 and 1.7 times greater, vention, and treatment. respectively) (21). An investigation in the United Kingdom of Great Britain and Northern Ireland Health promotion and prevention regarding health inequalities among people Misconceptions about the health of people with with learning impairments and people with disabilities have led to assumptions that people mental health disorders found that they had a with disabilities do not require access to health lower life expectancy (see Box 3.2) (15). promotion and disease prevention (60). In some instances mortality rates for people Evidence shows that health promotion inter- with disabilities have fallen in developed coun- ventions such as physical activities are beneficial tries. For example, adults with cerebral palsy for people with disabilities (61–65). But health have lifespans close to those of people with no promotion activities seldom target people with disability (55). Over the past few decades people disabilities, and many experience multiple barri- with a spinal cord injury in the United Kingdom ers to participation. For example, limited access and the United States have improved survival to health promotion has been documented for rates during the first one to two years following people with multiple sclerosis (66), stroke (67), injury (56, 57), but beyond this period there is no poliomyelitis (67), intellectual impairment (15), evidence of improvement (57). The data are lim- and mental health problems (15). ited on mortality rates for people with disabilities While some research indicates minimal in low-income countries. A study in Bangladesh differences in immunization rates (68–70), suggests that people with cerebral palsy may have people with disabilities are generally less higher rates of premature death (58). likely to receive screening and preventive ser- vices. Several studies found that women with Needs and unmet needs disabilities receive less screening for breast and cervical cancer compared with women Disabled respondents from 51 countries report- without disabilities (15, 68, 69, 71–75), and ed seeking more inpatient and outpatient care men with disabilities are less likely to receive 60 Chapter 3 General health care Box 3.2. Health inequalities experienced by people with disabilities The Disability Rights Commission in the United Kingdom formally investigated premature deaths among people with learning disabilities or mental health problems and local reports of unequal access to health care between 2004 and 2006. People with long-term mental health problems – such as severe depression, bipolar disorder, or schizophrenia – and learning disabilities, such as autism: ■ Had more chronic health conditions than the general population. They were more likely to be obese and have heart disease, high blood pressure, respiratory disease, diabetes, strokes, or breast cancer. People with schizophrenia were nearly twice as likely to have bowel cancer. Although the recording of people with learning disability in primary care settings was poor, higher rates of respiratory disease and obesity in this population were indicated. ■ Developed chronic health conditions at a younger age than other people. For example, 31% of people with schizo- phrenia were diagnosed with heart disease under the age of 55, compared with 18% of others with heart disease. ■ Died sooner following diagnosis. Five years following a diagnosis of heart disease (adjusting for age), 22% of people with schizophrenia and 15% of people with bipolar disorder had died, compared with 8% of people without serious mental health problems. The pattern was similar for stroke and chronic obstructive pulmonary disorder. Social deprivation was a major contributor to these health inequalities, and people with mental health problems and learning disabilities were at a high risk of poverty. The lack of health promotion, service access, and equal treatment were also cited as significant barriers. Disabled people identified fear and mistrust, limited access to general practice lists, difficulty negotiating appointment systems, inaccessible information, poor communication, and diagnostic overshadowing. Service providers identified issues such as fear, ignorance, and inadequate training. Responses to the study were positive. Prominent health care professionals endorsed the findings. The British Medical Association established training for medical students, and nongovernmental organizations ran cam- paigns on health inequalities. The British government introduced incentives to encourage people with learning disabilities to undergo health checks and strengthened guidance for mental health-care workers. The Health Care Commission in association with RADAR – a disability NGO – undertook further work to explore disabling factors in health care and to produce guidelines on good practice and criteria for future health care inspections. Source (15). screening for prostate cancer (68, 76). A United disabilities are more likely to be excluded from Kingdom investigation found that people with sex education programmes (78, 79). A national intellectual impairment and diabetes are less study in the United States showed that women likely than others with just diabetes to have with functional limitations were less likely to their weight checked, and people with schizo- be asked about contraceptive use during visits phrenia and a high risk of coronary heart to general practitioners (71). disease are less likely to receive cholesterol screening (15). Dental care The oral health of many people with disabilities Sexual and reproductive health services is poor, and access to dental care limited (80– Sexual and reproductive health services include 86). An Australian study investigating dental family planning, maternal health care, prevent- treatment of children with disabilities found ing and managing gender-based violence, and that the simple treatment needs of 41% of the preventing and treating sexually transmitted sample were not met (81). A study of the use of infections including HIV/AIDS. While little oral health care services by children in Lagos, information is available, it is widely thought Nigeria, found that children with disabilities that people with disabilities have significant and children from lower socioeconomic status unmet needs (77). Adolescents and adults with did not adequately use dental facilities (84). 61 World report on disability Table 3.1. Individual’s seeking health care and not receiving needed care. Percent Low-income countries High-income countries All countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Male Sought inpatient care 13.7 22.7* 21.7 42.4* 16.5 28.5* Sought outpatient care 49.3 58.4* 55.0 61.8* 51.1 59.5* Needed, but did not get care 4.6 6.6* 2.8 3.3 4.1 5.8* Female Sought inpatient care 16.8 21.9* 30.1 46.7* 20.9 29.0* Sought outpatient care 49.6 59.3* 67.0 68.5 55.8 61.7* Needed, but did not get care 4.8 6.1 1.8 4.6* 3.7 5.8* 18–49 Sought inpatient care 13.5 23.2* 23.1 46.6* 16.1 28.1* Sought outpatient care 48.8 58.5* 56.7 63.4* 50.9 59.3* Needed, but did not get care 4.3 6.2* 2.3 4.1 3.8 6.0* 50–59 Sought inpatient care 13.9 20.7* 22.1 42.9* 16.6 27.1* Sought outpatient care 52.1 67.4* 61.4 74.9* 55.1 69.2* Needed, but did not get care 4.2 6.7* 2.2 4.6 3.6 6.4* 60 and over Sought inpatient care 18.6 20.6 31.4 42.3* 23.7 29.9* Sought outpatient care 49.9 56.7 67.9 67.6 57.3 60.8   Needed, but did not get care 5.6 6.3 2.2 3.8 4.2 5.3 Note: Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (59). Mental health services disorders, anxiety disorders, and alcohol abuse Many people with mental health conditions or dependence (88). do not receive mental health care despite the fact that effective interventions exist, includ- ing medication. A large multicountry survey Addressing barriers supported by WHO showed that between 35% to health care and 50% of people with serious mental disor- ders in developed countries, and between 76% People with disabilities encounter a range of and 85% in developing countries, received no barriers when they attempt to access health treatment in the year before the study (87). A care services (7, 89, 90). Analysis of the World meta-analysis of 37 epidemiological studies Health Survey data showed a significant differ- across 32 developed and developing countries ence between men and women with disabilities uncovered a median treatment gap between and people without disabilities in terms of the 32% and 78% for a range of mental health attitudinal, physical, and system level barriers conditions including schizophrenia, mood faced in accessing care (see Table 3.2). 62 Chapter 3 General health care Research in Uttar Pradesh and Tamil Nadu identified cost, distance, and lack of transport states of India found that cost (70.5%), lack of as reasons for not using services, along with services in the area (52.3%), and transporta- services no longer being helpful or the individ- tion (20.5%) were the top three barriers to ual not being satisfied by the services (92–95). using health facilities (91). These findings are Governments can improve health out- supported by studies in Southern Africa that comes for people with disabilities by improving Table 3.2. Reasons for lack of care Percent Low-income High-income All countries countries countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Male Could not afford the visit 40.2 58.8* 11.6 29.8* 33.5 53.0* No transport 18.4 16.6 6.9 28.3* 15.2 18.1 Could not afford transport 20.1 30.6 2.1 16.9* 15.5 27.8* Health-care provider’s equipment 8.5 18.7* 5.0 27.8* 7.7 22.4* inadequate Health-care provider’s skills inadequate 5.8 14.6* 9.9 13.5 6.7 15.7* Were previously treated badly 4.6 17.6* 7.2 39.6* 5.1 23.7* Could not take time off 9.5 11.9 6.2 7.9 8.8 11.8 Did not know where to go 5.1 12.4 1.5 23.1* 4.3 15.1* The person did not think he/she/his/her 42.6 32.2 44.1 18.0* 43.7 28.4* child was sick enough Tried but was denied care 5.2 14.3* 18.7 44.3* 8.5 23.4* Other 12.8 18.6 12.5 20.5 12.4 18.1 Female Could not afford the visit 35.6 61.3* 25.8 25.0 32.2 51.5* No transport 14.0 18.1 7.9 20.4* 13.8 17.4 Could not afford transport 15.3 29.4* 4.4 15.2* 13.3 24.6* Health-care provider’s equipment 10.2 17.0 8.4 25.7* 9.8 17.0* inadequate Health-care provider’s skills inadequate 5.3 13.6* 8.9 20.6* 6.3 15.7* Were previously treated badly 3.7 8.5* 9.3 20.1* 5.3 10.2* Could not take time off 6.1 8.3 8.3 17.8 6.6 10.6 Did not know where to go 7.7 13.2 9.3 16.2 9.0 12.2 The person did not think he/she/his/her 30.7 28.2 21.3 22.6 29.3 29.3 child was sick enough Tried but was denied care 3.8 9.0* 19.6 54.6* 7.3 21.7* Other 30.2 17.0* 23.0 24.0 28.5 16.4* Could not afford the visit 18–49 Could not afford the visit 38.7 65.4* 14.1 27.7* 33.6 58.7* No transport 12.7 13.7 6.6 25.1 11.3 16.0 Could not afford transport 15.0 29.5* 4.6 11.2* 12.8 25.8* continues ... 63 World report on disability ... continued Percent Low-income High-income All countries countries countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Health-care provider’s equipment 9.7 17.4* 9.2 29.3 9.5 20.3* inadequate Health-care provider’s skills inadequate 6.2 15.4* 10.9 18.4 7.4 16.3* Were previously treated badly 5.1 15.1* 6.8 17.9* 5.5 15.5* Could not take time off 9.0 13.4 8.8 23.9 8.8 15.8 Did not know where to go 7.0 11.9 2.0 9.0* 5.9 11.8* The person did not think he/she/his/her 40.2 30.6* 26.8 26.9 37.0 29.4 child was sick enough Tried but was denied care 5.3 12.9* 27.5 49.5* 10.5 21.4* Other 16.0 13.5 17.5 14.4 16.2 13.3 50–59 Could not afford the visit 49.6 67.4* 17.9 26.7 42.8 58.0 No transport 19.8 16.0 2.9 2.3 16.3 13.0 Could not afford transport 23.1 33.0 0.7 4.0 18.5 26.3 Health-care provider’s equipment 8.6 14.5 4.2 29.1 7.7 15.1 inadequate Health-care provider’s skills inadequate 6.5 13.3 10.0 40.9* 7.2 17.6 Were previously treated badly 6.7 12.4 7.2 31.1 6.8 14.0 Could not take time off 8.8 9.7 14.9 10.8 10.2 9.7 Did not know where to go 11.6 18.5 6.5 4.5 10.5 15.6 The person did not think he/she/his/her 35.4 14.5* 38.2 5.3* 36.0 13.0* child was sick enough Tried but was denied care 6.4 17.9 18.0 55.3* 9.0 24.5* Other 18.6 12.8 34.8 44.5 22.1 19.9 60 and over Could not afford the visit 36.8 47.7 14.4 21.1 30.6 38.7 No transport 25.1 24.3 9.5 30.3* 20.6 22.0 Could not afford transport 23.6 27.5 1.9 28.5* 18.0 24.7 Health-care provider’s equipment or are 9.1 17.1 3.2 20.6 7.7 16.5 inadequate Health-care provider’s skills inadequate 4.1 11.8 6.6 18.5 4.8 14.8 Were previously treated badly 1.7 6.7* 8.7 36.7* 3.7 14.1 Could not take time off 5.4 4.1 2.7 1.2 5.1 3.2 Did not know where to go 4.5 13.8 9.0 37.6* 6.1 16.5 The person did not think he/she/his/her 31.8 32.7 56.2 21.6* 38.9 31.2 child was sick enough Tried but was denied care 2.6 7.8 4.5 62.1* 3.2 25.8*   Other 27.7 25.2 12.2 35.5* 23.7 22.6 Note: Results are significant in every case according to Pearson’s Chi-Square test, corrected for survey design. Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (59). 64 Chapter 3 General health care access to quality, affordable health care services, with disabilities experience health inequali- which make the best use of available resources. ties is needed to remove health disparities (11). Usually several factors interact to inhibit access Countries such as Australia, Canada, the United to health care (96), so reforms in all the inter- Kingdom and the United States have published acting components of the health care system national agendas or position papers that specifi- are required: cally address the health problems of people with ■ reforming policy and legislation intellectual impairment (14). In the United States ■ addressing barriers to financing and Healthy People 2010 – a framework for prevent- affordability ing health conditions in the entire population – ■ addressing barriers to service delivery makes reference to people with disabilities (60). ■ addressing human resource barriers In addition to the health sector, many ■ filling gaps in data and research (97). other sectors can enact “disability-friendly” policies to prevent access barriers and enable Reforming policy and legislation those with disabilities to promote their health and actively participate in community life (99). International, regional, and national policy Legislation and policies within the education, and legislation can help meet the health care transport, housing, labour, and social welfare needs of people with disabilities where political sectors can all influence the health of people will, funding, and technical support accom- with disabilities (see Chapters 5–8 for further pany implementation. Policy formulated at the information). international level can affect national health People with disabilities are most intimately care policies (98). International agreements familiar with and most affected by barriers to such as the CRPD (2) and the Millennium health care access, and eliminating these barriers Development Goals can provide countries requires input from these people (89). Research with rationale and support to improve avail- has shown the benefits of involving users in the ability of health care for people with disabili- design and operation of health care systems (100). ties. The CRPD indicates the following areas People with diverse disabilities can contribute, for action: including people with intellectual impairment ■ Accessibility – stop discrimination against (101), people with mental health conditions people with disabilities when access- (102–104), children with disabilities (105), and ing health care, health services, food or families and caregivers (106, 107). fluid, health insurance, and life insurance. Commitment to collaboration is neces- This includes making the environment sary, and input is required from health-care accessible. providers familiar with the structural, institu- ■ Affordability – ensure that people with tional, and professional challenges of providing disabilities get the same variety, quality, access to quality care. The time, technical, and and standard of free and affordable health resource challenges of involving users must be care as other people. acknowledged (100, 106), but the benefits are ■ Availability – put early intervention and also significant. People with disabilities are fre- treatment services as close as possible to quent users of the health care system, and tend where people live in their communities. to use a wide range of services across the con- ■ Quality – ensure that health workers give tinuum of care, so their experiences can also the same quality care to people with dis- help measure overall performance of the health abilities as to others. system (17, 89). Formal acknowledgement, within national health care policies, that some groups of persons 65 World report on disability Table 3.3. Overview of health expenditures, proportion of disabled and not disabled respondents Percent Low-income countries High-income countries All countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Men Paid with current income 84.6 81.4* 73.3 70.1 80.9 79.1 Paid with savings 10.6 9.8 11.5 12.9 10.8 11.1 Paid with insurance 1.8 1.8 11.3 13.3 5.1 5.2 Paid by selling items 13.6 17.6* 3.3 5.3 9.9 13.6* Family paid 15.8 23.8* 7.7 13.5* 12.9 21.3* Paid by borrowing 13.7 25.2* 5.9 14.7* 11.0 21.6* Paid by other means 5.3 5.1 2.6 6.5* 4.3 5.5 Women Paid with current income 82.9 82.8 71.5 74.9 78.5 80.3 Paid with savings 9.1 10.8 11.4 11.6 10.1 10.8 Paid with insurance 2.0 1.8 11.1 16.0* 5.7 6.2 Paid by selling items 12.0 14.2* 2.4 4.7* 8.3 10.7* Family paid 16.7 26.6* 9.3 15.1* 13.7 22.7* Paid by borrowing 14.0 23.5* 6.4 12.7* 11.2 19.5*   Paid by other means 6.7 5.8 2.6 3.6 4.9 5.3 Note: Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (59). and out-of-pocket expenses. The World Health Addressing barriers to Survey showed that the rate at which people with financing and affordability disabilities pay with current income, savings, or insurance is roughly the same as for people A review of the 2002–2004 World Health Survey without disabilities, but paying with personal reveals that affordability was the primary reason means varies between groups: paying with why people with disabilities, across gender and insurance is more common in high-income age groups, did not receive needed health care in countries, while selling items and relying on low-income countries. For 51 countries 32–33% friends and family is more common in low- of nondisabled men and women cannot afford income countries, and people with disabilities health care, compared with 51–53% of people are more likely to sell items, borrow money, or with disabilities (see Table 3.2). Transport costs rely on a family member (see Table 3.3). also rank high as a barrier to health care access Public health systems theoretically provide in low-income and high-income countries, and universal coverage, but this is rare (108, 109): no across gender and age groups. country has ensured that everybody has imme- Health services are funded through a vari- diate access to all health care services (110). ety of sources including government budgets, In the poorest countries only the most basic social insurance, private health insurance, services may be available (110). Restrictions external donor funding, and private sources in public health sector expenditure are result- including nongovernmental arrangements ing in an inadequate supply of services and a 66 Chapter 3 General health care significant increase in the proportion of out- with disabilities may not be able to afford of-pocket expenditure by households (109, insurance premiums associated with employer- 111). In many low-income countries less than based health insurance plans (114), while disa- 1% of health budgets are spent on mental health bled people working in the informal sector or care, with countries relying on out-of-pocket for small businesses are unlikely to be offered payments as the primary financing mecha- insurance (114). nism (112). Some middle-income countries are The World Health Survey found that disa- moving towards private sector provision for bled respondents in 31 low-income and low treatments such as mental health services (113). middle-income countries spend 15% of total People with disabilities experience lower household expenditure on out-of-pocket health rates of employment, are more likely to be eco- care costs compared with 11% for nondisabled nomically disadvantaged, and are therefore respondents. People with disabilities were also less likely to afford private health insurance found to be more vulnerable to catastrophic (114). Employed people with disabilities may be health expenditure (see Table 3.5) across gender excluded from private health insurance because and age groups, and for both low-income and of pre-existing conditions or be “underinsured” high-income countries as defined by the World (114) because they have been denied coverage for Bank. For all countries, 28–29% of all people a long period (11), or are excluded from claiming with disabilities suffer catastrophic expendi- for treatment related to a pre-existing condition, tures compared with 17–18% of nondisabled or must pay higher premiums and out-of-pocket people, but low-income countries show signifi- expenses. This has been a problem in the United cantly higher rates than high-income countries States for example, but the new Affordable Care across sex and age groups. Act enacted in March 2010 will prohibit the denial of insurance to those with pre-existing Financing options conditions starting in 2014 (115). Health system financing options determine Analysis from the 2002–2004 World Health whether health services – a mix of promo- Survey across 51 countries showed that men and tion, prevention, treatment, and rehabilita- women with disabilities, in high-income and tion – are available and whether people are low-income countries, had more difficulties protected from financial risks associated with than adults without disabilities in obtaining, using them (110, 116). Contributions such as from private health care organizations or the social insurance and copayment for health government, payment exemptions or the right services must be affordable and fair, and take to special rates for health care. Furthermore into account the individual’s ability to pay. people with disabilities experienced more dif- Full access will be achieved only when gov- ficulties in finding out which benefits they were ernments cover the cost of the available health entitled to from health insurance and obtain- services for disabled people who cannot afford ing reimbursements from health insurance. to pay (110). This finding was most evident in the age group A range of health financing options can 18–49 with some variability in the older age increase the availability of health care services groups across income settings (see Table 3.4). to the general population, and improve access Social health insurance systems are gener- for individuals with disabilities. The World ally characterized by mandatory payroll contri- Health Report 2010 outlines an action agenda butions from individuals and employers (109). for paying for health that does not deter people These employer-based systems may be inacces- from using services including (110): sible for many adults with disabilities because ■ raise sufficient resources for health by they have lower employment rates than people increasing the efficiency of revenue collec- without disabilities. Even employed people tion, reprioritizing government spending, 67 World report on disability Table 3.4. Difficulties in access to health care financing Percent Low-income countries High-income countries All countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Male Difficulties in: obtaining exemptions or special rates 17.7 24.1* 7.5 14.1* 15.0 22.0* completing insurance applications 3.6 6.6 4.7 12.4* 4.3 10.1* finding out insurance benefits/entitlements 4.0 9.0* 8.6 17.2* 6.4 13.2* getting reimbursed from health insurance 3.3 7.4* 3.5 11.8* 3.4 8.6* Female Difficulties in: obtaining exemptions or special rates 15.7 23.5* 5.9 16.5* 12.3 21.1* completing insurance applications 3.3 5.2 5.1 9.3* 4.5 7.0* finding out insurance benefits/entitlements 3.3 6.0* 8.4 15.9* 6.2 10.7* getting reimbursed from health insurance 3.2 5.4* 3.2 5.8* 3.1 5.6* 18–49 Difficulties in: obtaining exemptions or special rates 15.7 22.5* 6.3 15.8* 13.7 21.6* completing insurance applications 4.2 6.7* 4.2 10.7* 4.1 8.3* finding out insurance benefits/entitlements 4.6 8.0* 9.9 17.7* 7.3 12.1* getting reimbursed from health insurance 4.2 7.1* 4.1 10.6* 4.1 8.0* 50–59 Difficulties in: obtaining exemptions or special rates 17.5 24.2* 7.9 18.5* 14.9 23.1* completing insurance applications 3.8 5.8 5.9 14.6* 5.0 10.4* finding out insurance benefits/entitlements 5.0 7.9 9.1 19.9* 7.4 13.8* getting reimbursed from health insurance 4.4 7.1 5.0 8.0 4.7 7.4 ≥ 60 Difficulties in: obtaining exemptions or special rates 18.6 25.5 6.9 14.0* 13.6 20.1* completing insurance applications 2.1 4.4 6.0 7.8 4.7 6.7 finding out insurance benefits/entitlements 1.6 6.1* 5.8 11.7* 4.2 9.6*   getting reimbursed from health insurance 1.3 4.7 1.5 4.8* 1.5 4.7* Note: Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (59). 68 Chapter 3 General health care Table 3.5. Overview of catastrophic health expenditures, proportion of disabled and not disabled respondents Percent Low-income countries High-income countries All countries Not disabled Disabled Not disabled Disabled Not disabled Disabled Male 20.2 31.2 14.5 18.5 18.4 27.8 Female 20.0 32.6 12.7 18.7 17.4 28.7 18–49 19.9 33.4 13.2 16.1 17.9 29.2 50–59 18.2 32.6 13.0 24.7 16.4 30.1   60 and over 21.2 29.5 14.2 21.5 18.3 26.3 Note: All results are significant according to Pearson’s Chi-Square test, corrected for survey design. Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. Source (59). using innovative financing, and providing disability (121). In Colombia subsidized health development assistance; insurance increased coverage for the poorest ■ remove financial risks and barriers to access; quintile of the population (122), which may ■ promote efficiency and eliminate waste. benefit people with disabilities because they are disproportionately represented in the While improving access to affordable, bottom quintile. quality health care pertains to everyone, the evidence presented above suggests that people Target people with disabilities who with disabilities have more health care needs have the greatest health care needs and more unmet needs. This section therefore Some governments have targeted funding to focuses specifically on financing strategies that primary care doctors and organizations to may improve access to health services for per- support health care of people with the great- sons with disabilities. est need. Care Plus – a primary health care initiative in New Zealand – provides an addi- Provide affordable health insurance tional approximately 10% capitation funding Having insurance (public, private, or mixed) to primary health organizations to include can increase disabled people’s access to, and services such as comprehensive assessments, use of, health care services. Having insurance individual care plan development, patient edu- improves a variety of outcomes including an cation, and regular follow-ups, as well as better- increase in the likelihood of receiving primary coordinated and lower cost services (123, 124). care, a decrease in unmet needs (including for Medicare, a United States government social speciality care), and a reduction in delays or in insurance scheme, provides additional pay- foregoing care (117–119). Insurance for a wide ment to primary care physicians for physician- range of basic medical services can improve patient-family-nurse conferences to facilitate clinical outcomes (120), and can reduce the communication, support lifestyle changes, financial problems and the burden of out-of- and improve treatment compliance (125). The pocket payments for families (118). Subsidizing programme improved functioning of elderly health insurance can also extend coverage to people with heart conditions and has the poten- persons with disabilities. In Taiwan, China tial to lower total health care expenditures the health insurance scheme pays for part of (125). Many governments also extend financial the insurance premium for people with intel- assistance to disabled people’s organizations lectual disabilities according to their level of and nongovernmental organizations for health 69 World report on disability programmes targeting people with disabilities more on health than people without disabilities (91, 126, 127). (see Table 3.3). Removing fees does not guarantee access, however, as even “free” health services may Link income support to use of health care not get used. People with mental health conditions, Reviews of health financing mechanisms for the for example, might not access services because of poor in Latin America indicate that conditional barriers such as stigma, or people with mobility cash transfers can increase the use of preven- impairments may face physical barriers to health tative health services and encourage informed care access (72, 113). and active health care consumers, where effec- tive primary health care and a mechanism to Provide incentives for health disburse payments are in place (111, 128–131). providers to promote access Conditional cash transfers, targeted at those Some people with disabilities require prolonged groups of people with disabilities who typi- care and accommodations requiring additional cally receive fewer preventative services, may resources to ensure effective coordination increase access to these services (114). (114). In the United States tax credits to small practices help make up for the cost of patient Provide general income support accommodations (132). In Wales new disability Unconditional cash transfers for people with access criteria for primary care doctors create disabilities recognize the additional barriers incentives for general medical practices to make they face in accessing health care and reha- services more accessible to disabled people (15). bilitation, transport, education, and working, among other things. Many countries provide Addressing barriers to income support through these transfers to poor service delivery households, including poor households with a disabled member, and directly to individuals Ensuring the availability of services and disa- with disabilities. Some, such as Bangladesh, bled peoples’ awareness of the services, includ- Brazil, India, and South Africa, have uncon- ing those in rural and remote communities, is ditional cash transfer programmes targeted at essential to improving access (see Box  3.3). poor people and households with a disabled Where services do exist people with disabili- member. The programmes aim at increasing ties may encounter a range of physical, com- the disposable income of poor households, munication, information, and coordination which they spend according to their priori- barriers when they attempt to access health ties – for example by buying food, enrolling care services. children in education, or paying for health Physical barriers may be related to the archi- care. No best practice formula is available to tectural design of health facilities, or to medical guide policy, but cash transfers can exist along equipment, or transportation (11, 69, 72, 96). with other social policies and social protection Barriers to facilities include inaccessible programmes. parking areas, uneven access to buildings, poor signage, narrow doorways, internal steps, and Reduce or remove out-of-pocket inadequate bathroom facilities. A study of 41 payments to improve access Brazilian cities examining the architectural bar- Reduction or elimination of out-of-pocket pay- riers in basic health care units found that about ments for fees – whether formal or informal – can 60% did not allow adequate access for people increase poor people’s use of health care services, with functional difficulties (137). Similarly, a and reduce financial hardship and catastrophic survey carried out in Essen, Germany found health expenditure (110, 111). This is particularly that 80% of orthopaedic surgeries and 90% important for people with disabilities who spend of neurological surgeries did not meet access 70 Chapter 3 General health care Box 3.3. Access to mental health services The 2001 World Health Report called for adequate access to effective and humane treatment for people with mental health conditions (133). Access to appropriate care is problematic for many people with mental health conditions, and certain groups – such as rural populations – typically have less access to services than other groups (134). In ensuring access to mental health services, one of the most important factors to consider is the extent to which services are community-based (135). But in most countries, care is still predominantly provided in institutions. In low-income and middle-income countries there is less than one outpatient contact or visit (0.7) per day spent in inpatient care (136). The move from institutional to community care is slow and uneven. A recent study of mental health systems in 42 low-income and middle-income countries (136) showed that resources for mental health are overwhelmingly concentrated in urban settings. A considerable number of people with mental health conditions are being hospitalized in mental hospitals in large cities. Controlling for population density, there were nearly three times as many psychiatric beds in the largest city of a country, than in the rest of the country (see figure below). In low-income countries, the imbalance was even greater with more than six times as many beds based in the largest city. A similar pattern was found for human resources: across the participating countries, the ratio per population of psychiatrists and nurses working in the largest city was more than twice that of psychiatrists and nurses working in the entire country. Ratio of psychiatric beds located in or near the largest city to beds in the entire country 8 Ratio of beds per 100 000 population 6.4 6 4 2.9 2.9 2 1.3 0 LICs (n=10) LMICs (n=23) UMICs (n=5) Total (n=38) Note: Low-income countries (LICs), lower middle-income countries (LMICs), and upper middle-income countries (UMICs) To increase access to services for people with mental health conditions, community care systems need to be strengthened. This will include greater integration into primary health care, as well as discouraging hospitaliza- tion, especially in large mental hospitals, and strengthening outpatient mental health care through follow-up care and mobile teams (161). Wherever delivered, mental health services need to respect the human rights of people with mental health conditions, in line with the CRPD (162). standards, which limited wheelchair users high-income countries report similar difficul- from accessing their doctor of choice (138). ties (see Table 3.2). For example, many women Medical equipment is often not acces- with mobility impairments are unable to access sible for people with disabilities, particularly breast and cervical cancer screening because those with mobility impairments. In the World examination tables are not height-adjustable Health Survey men with disabilities report and mammography equipment only accom- health service provider’s equipment (including modates women who are able to stand (11, 132). medication) to be inadequate across income People with disabilities frequently cite settings (22.4% compared with 7.7% for men transport as a barrier to accessing health care, without disabilities); women with disabilities in particularly when they are located at a distance 71 World report on disability from health care facilities (see Table 3.2) (91–95). rehabilitation, which require input from differ- Transport for people with disabilities is often ent service providers. These needs may extend limited, unaffordable, or inaccessible (139). The across services in different sectors such as the majority of disabled participants in a United education and social sectors. People with dis- States study said that transportation problems abilities who require multiple services often were a major barrier to accessing health care receive fragmented or duplicative services (89). A study in the Republic of Korea suggested (147). They may also encounter transitional that transportation barriers were a likely factor difficulties when care is transferred from one in keeping people with severe physical and com- service provider to another (148), such as when munication impairments from participating in transitioning from child to adult services (149– population screenings for chronic diseases (140). 151), and from adult services to elderly services Communication difficulties between (152, 153). people with disabilities and service providers Lack of communication between service are regularly cited as an area of concern (79, providers can hamper coordinated service 141, 142). Difficulties can arise when people delivery (154). Primary health-care profession- with disabilities attempt to make appointments als’ referrals to specialists often lack sufficient with service providers, provide a medical his- information, for example. Conversely primary tory and description of their symptoms, or try health-care professionals frequently receive to understand explanations about diagnosis and inadequate consultation reports from special- management of health conditions. Inaccurate ists, and discharge summaries following hos- case histories may be provided to health-care pital admission may never reach the primary practitioners when information is supplied by care doctor (155). caregivers, family members, or others (143). Primary care consultations can take longer Service providers may feel uncomfortable for people with disabilities than for people communicating with people with disabilities. without disabilities (156). Adults with intel- For example, many health-care providers have lectual impairment often require extra time for not been trained to interact with people with examinations, screening, clinical procedures, serious mental illness, and feel uncomfortable and health promotion (99). Health-care prac- or ineffective in communicating with them titioners are often not reimbursed for the addi- (144). An investigation into Deaf women’s tional consultation time they spend with people access to health care in the United States found with disabilities (132, 156), and the disparities that health-care workers often turn their heads between actual cost and reimbursement can be down when talking, preventing deaf women a disincentive for service providers to provide from lip-reading (141). comprehensive health care (156). Short consul- Failure to communicate in appropriate for- tations may leave little time for service provid- mats can lead to problems with compliance and ers to understand and address the sometimes attendance (145). A survey commissioned by the complex health care needs of people with dis- Zimbabwe Parents of Handicapped Children’s abilities (154, 157). Association found that people with disabilities Perceptions of health status may influ- were excluded from general HIV/AIDS ser- ence health behaviours, including attendance vices because counselling and testing were not at health care services, and how health needs offered in sign language for people with hearing are communicated. A study on people with epi- impairments, and education and communica- lepsy in rural Ghana, for example, found that tion materials were not offered in Braille for spiritual beliefs surrounding epilepsy influ- people with visual impairments (146). enced health and seeking of treatment (158). A Some people with disabilities may have study in rural areas of the Gambia reported that multiple or complex health needs, including only 16% of 380 people with epilepsy knew that 72 Chapter 3 General health care preventive treatment was possible; of the 48% of Within low-income and lower middle- people with epilepsy who had never used treat- income settings, community-based rehabili- ment, 70% did not know that clinics offered tation (CBR) programmes can promote and treatment for seizures (158). People with intel- facilitate access to health care services for people lectual impairment in minority ethnic commu- with disabilities and their families. As outlined nities have also been found to be less likely to in the health component of the CBR guidelines use health care services (14, 159). An Australian (166), programmes can assist people with dis- study on women with mental health conditions abilities to overcome access barriers, train and physical, sensory, and intellectual impair- primary health care workers in disability aware- ment found that self-perceptions regarding ness, and initiate referrals to health services. sexuality, painful past experiences associated with reproductive screening, and memories of Target interventions to complement themselves before disability were all barriers inclusive health care to seeking health care (72). In another exam- Targeted interventions can help reduce ineq- ple, people who experience disability as they uities in health and meet the specific needs of age may “normalize” their symptoms as “just individuals with disabilities (4, 17). Groups part of ageing” rather than seeking appropriate that are difficult to reach through broad-based treatment (160). programmes – people with intellectual impair- ment, mental health conditions, or Deaf people, Include people with disabilities in for example – may warrant targeted interven- general health care services tions. Targeted interventions may also be useful All groups in society should have access to for people with disabilities with a higher risk comprehensive, inclusive health care (122, 163). of secondary conditions or co-morbidities, or An international survey of health research pri- where there are specific health needs requiring orities indicated that addressing the specific ongoing care (see Box 3.4). impairments of people with disabilities is sec- Health promotion efforts targeted at people ondary to integrating their health needs into with disabilities can have a substantial impact primary health care systems (164). Primary on improving lifestyle behaviours, increasing care services are generally the most accessi- the quality of life, and reducing medical costs ble, affordable, and acceptable for communi- (18, 168). Several small health promotion pro- ties (161). For example, a systematic review of grammes for weight loss and fitness developed studies from six developing countries in Africa, specifically for people with intellectual impair- Asia, and Latin America confirmed that local, ment have demonstrated some success (169). affordable primary health care programmes An intervention in the United States for adults were more effective than other programmes with Down syndrome included a 12-week fit- for people with mental health conditions (165). ness and health education programme, which Providers may have to cater to the range of led to significantly improved fitness, strength, needs stemming from hearing, vision, speech, and endurance, and slight but significant reduc- mobility, and cognitive impairments to include tions in body weight (65). people with disabilities in primary health care services. Table 3.6 lists examples of accommo- Improve access to specialist dations. While evidence on the efficacy of such health services accommodations is limited, they represent Primary care teams require support from spe- practical approaches, widely recommended cialized services, organizations, and institu- throughout the literature and within the dis- tions (170) to provide comprehensive health care ability community. to people with disabilities. A survey of general 73 World report on disability Table 3.6. Examples of reasonable accommodations Accommodations Suggested approaches Structural modifications to Ensuring an accessible path of travel from the street or transit to the clinic; allocating facilities adequate parking bays for people with disabilities; configuring the layout of examination rooms and other clinic spaces to provide access for mobility equipment or support people; installing ramps and grab rails; widening doorways; clearing hallways of equipment obstructing the path of travel; installing lifts; high contrast, large print and Braille signage; providing modified toilets and hand washing facilities; providing seating for those who cannot stand or sit on the floor to wait. Using equipment with Height-adjustable examination tables or availability of a lower cot or bed for examination; universal design features seated or platform scales; wheelchair accessible diagnostic equipment: for example, mammography equipment. Communicating information Presenting health information in alternative formats such as large print, Braille, audio in appropriate formats and picture format; speaking clearly and directly to the individual; providing information slowly to ensure comprehension; demonstrating activities rather than just describing them; sign language interpreting services; providing readers, scribes, or interpreters to assist with forms. Making adjustments to Provisions for making appointments via e-mail or fax; sending text or phone appoint- appointment systems ments reminders; scheduling additional time for appointments; offering first or last appointments; clustering appointments for general health and disability needs. Using alternative models of Telemedicine; mobile clinic services, and house calls; involving family members and car- service delivery egivers in medical consultations when appropriate and desired by the patient; assistance   with transportation to health services. Box 3.4. Preventing HIV/AIDS among young people with disabilities in Africa In 1999 the international network Rehabilitation International began an HIV/AIDS project in Mozambique and the United Republic of Tanzania to promote the African Decade of Persons with Disabilities, and to provide HIV/AIDS leadership and human rights training. The nongovernmental organizations Miracles in Mozambique, the Disabled Organization for Legal Affairs, and Social Economic Development in the United Republic of Tanzania were local partners in the project, with support by the Swedish International Development Agency. A baseline survey carried out with 175 disabled people aged 12–30 revealed that knowledge about HIV/AIDS was low, there was a lack of health information available in accessible formats and health facilities were also often inaccessible. The project developed educational materials on HIV/AIDS issues and rights for youths and young adults with disabilities, as well as for outreach workers and peer educators working with this group. The materials included manuals in accessible formats such as Braille and a DVD with sign language. Project materials were widely dis- seminated to HIV/AIDS and disability organizations. Four training workshops, delivered in Kiswahili and Portuguese to 287 participants, were later expanded to include people with disabilities in rural areas of Mozambique. Some participants trained to serve locally as HIV/AIDS educators. At the same time, a wide-ranging campaign used mass media, the Internet, and seminars involving representatives of governments and nongovernmental organizations to educate the public. At the conclusion of the project, it was recommended that disability issues should be mainstreamed within HIV/ AIDS educational programmes. The participatory and inclusive approach proved effective in training young people with disabilities as well as peer educators and outreach workers. Source (167). 74 Chapter 3 General health care practitioners in the Netherlands found that attention to the health needs of adults with while they agreed that people with intellectual intellectual impairment, and improved health impairment should receive services in primary promotion and disease prevention (174). care settings, they rated access to specialist People-centred approaches should: support as “important to very important” for ■ Educate and support people with disabilities health issues such as behavioural and psychiat- to manage their health. Self-management ric problems and epilepsy (171). Comprehensive approaches have been effective in improv- health reviews in primary care settings have ing health outcomes and quality of life for also been recommended for people with intel- a range of chronic conditions, and in some lectual impairment with specialist multidisci- instances have lowered costs for the health plinary backup where required (169). care system (125, 175, 176). With appropri- Good practices in mental health highlight ate training and support, and opportunities the importance of specialists (161). In Uganda for collaborative decision-making, people mental health specialists travel to primary care with disabilities can actively improve their clinics to provide supervision and support; in health (see Box 3.5). People with disabili- Brazil visiting mental health specialists see ties with more knowledge can communi- patients together with primary care practition- cate better, negotiate the health system ers; and in Australia general practitioners are more effectively, and are generally more able to contact psychogeriatric nurses, psychol- satisfied with their care (179, 180). ogists, or psychiatrists as required (161). ■ Provide time-limited, self-management Dedicated community-based services courses, involving peer support to enable meet specialist health needs in some coun- persons with disabilities to better manage tries. In the United Kingdom, learning dis- their health (176). In Nicaragua, where ability teams are widely available for people the health system is overburdened with with intellectual impairment. These teams increasing patients with chronic disease, provide specialist treatment where general “chronic clubs” have been established in services are unable to meet needs, support health centres to teach people with dia- primary care services to identify and meet betes about risk factors, disease man- health needs, facilitate access to general ser- agement, signs of complications, and vices, and provide education and advice to healthy lifestyles (181). In Rwanda a study individuals, families, and other profession- regarding the health promotion needs of als (172). Outreach teams in Brazil and India individuals with lower limb amputation follow-up on patients with spinal cord injuries recommended workshops to enable people to address issues such as skin care, bowel and with disabilities to share experiences and bladder management, joint and muscle prob- motivate each other to improve health lems, and pain management (173). behaviours (37). ■ Involve family members and caregivers in Provide people-centred health services service delivery where appropriate. Family Many disabled people seek more collaborative members and caregivers may have limited relationships with primary care providers in knowledge and skills. They may not under- managing primary, secondary, and co-morbid stand the importance of a healthy lifestyle, conditions (7). A comprehensive health assess- or they may not be able to identify changes ment programme in Australia designed to in a person with a disability that would be enhance interactions between adults with intel- indicative of a health problem (182). Family lectual impairment and caregivers showed that members and caregivers can support the the assessment increased general practitioners’ health-seeking behaviours of people with 75 World report on disability Box 3.5. People with spinal cord injuries on the medical care team In 2005 a multicountry initiative was launched to investigate how people with disabilities could play a greater role in the management of their own care. The “New Paradigm of Medical Care for Persons with Disabilities” was a joint initiative between the World Health Organization (WHO), the Associazione Italiana Amici di Raoul Follereau (AIFO), and Disabled Peoples’ International (DPI). It followed an earlier WHO recommendation that health care services organized according to the traditional model of acute care were inappropriate for long-term health care because they did not give people with disabilities a sufficient role in managing their own care (177). The “New Paradigm” project in Piedecuesta, Colombia, encouraged people with spinal cord injuries to meet regularly as a group to discuss their health care needs. Health care and social workers provided information on health and led interactive training sessions in practical self-care skills. Topics covered included pressure sores, urinary problems, catheter management, and issues related to sexuality. Participants reported improved relationships with health care workers, and a better quality of life after the project started. The group decided to form an association after two years of regular meetings. Members of the association share their experiences with new people admitted to the local hospital in Piedecuesta with spinal cord injuries, making the members part of the local health care team (178). disabilities by identifying health needs, organizations – including those involved in helping obtain health care, including housing and education – can reduce the use scheduling appointments, accompanying of hospitals and nursing homes for people individuals to their appointments, and with disabilities and improve their general communicating information and helping health and participation in the community to promote and maintain healthy activities (190, 191). (14). One study in the United States sug- Effective and efficient ways to coordinate gested that spouses, partners and paid car- the seamless transition of health care services egivers were more likely than other types for people with disabilities are still under of caregivers to ensure the participation development. But some general strategies of people with disabilities in preventive thought to be effective include the following health care services (183). elements (148, 152, 192): ■ Identify a care coordinator. A range of Coordinate services health personnel can assume the role of Care coordination promotes a collaborative, care coordinator. Primary care structures interdisciplinary team approach to health care are probably the most efficient for coor- service delivery, linking people with disabili- dinating care throughout the health care ties to appropriate services and resources, and system (155, 185), and many people with ensuring a more efficient and equitable dis- disabilities see general practitioners as tribution of resources (147, 154, 184). While having the overall responsibility for their perhaps increasing service delivery costs in health care and being “gatekeepers” for the the short-term, coordination has the poten- wide range of community-based services tial to improve quality, efficiency, and cost– (193). Sometimes, dedicated care coordi- effectiveness of health care service delivery nation services and health facilitators can in the longer term (184–188). Targeting those assist people to access primary health care who can benefit will help improve outcomes services (120), as in the United Kingdom and reduce unnecessary coordination costs where clinical nurse specialists coordinate (189). Studies have confirmed that integrated health care for people with intellectual and coordinated approaches across service impairment (169). 76 Chapter 3 General health care ■ Develop an individual care plan. A cus- management, have reported high satisfac- tomized care plan is important to bridge tion with their care (201), and video con- current and past care and for arrang- ferencing also has successfully delivered ing future needs. A plan should be flex- self-management programmes (202). ible enough to accommodate changes in ■ Consumer health informatics – internet- people’s needs and circumstances (194). based, self-management programmes Enhanced Primary Care in Australia have helped people with chronic disease encourages general practitioners to carry (175, 203). A study compared internet- out comprehensive health assessments, based hearing screening with conventional multidisciplinary care plans, and case screening to demonstrate that the former conferences with older people, people could be accomplished successfully (204), with chronic illness, and people with and internet portals can offer “e-coaching” intellectual impairment (169). to prepare individuals for visits to primary ■ Provide appropriate referral and effective care physicians and to discuss chronic con- information transfer to other services. ditions (180). Timely referral can facilitate access and decrease stress, frustration, and the devel- Addressing human resource barriers opment of secondary conditions (154, 195, 196). Good communication between ser- Common barriers include health-service pro- vice providers is critical (197). Electronic viders’ attitudes, knowledge and skills, and records or client passbooks – which ensuring that heath practices do not conflict include information on a person’s abili- with the rights of persons with disabilities. ties, challenges, and methods of learning People with disabilities may be reluctant or communicating – can support transi- to seek health care because of stigmatization tion between child and adult services and and discrimination (205). People with dis- between multiple health care practitioners abilities may have experienced institutionali- (154). Inventories of relevant services and zation or other involuntary treatment, abuse, community resources also may be useful. neglect and persistent devaluation. Negative experiences in the health system, including Use information and instances of insensitivity or disrespect, may communication technologies result in distrust of health providers, failure Information and communication technologies to seek care, and reliance upon self diagnosis can increase the capacity of health care services, and treatment (89, 206). Therefore, respectful, improve the delivery of services and enable knowledgeable and supportive responses to people to better manage their own health (198). people with disabilities from health-care pro- Evidence on the efficacy of some technologies viders are vital. is limited, or shows limited effect, while other However, attitudes and misconceptions technologies promise benefits for the health among health-care providers remain barri- care system and for improvement in individual ers to health care for people with disabilities health outcomes (199). (90, 207). Some health-care providers may feel ■ Electronic medical records – shared uncomfortable about treating people with dis- electronic medical records can overcome abilities (157), and clinical decision-making common problems in care continuity (200). may be influenced by negative attitudes and ■ Telemedicine services – people receiving assumptions. The common misconception that psychiatric telemedicine services, such as people with disabilities are not sexually active psychiatric evaluations and medication often leads health professionals to fail to offer 77 World report on disability sexual and reproductive health services, for unsupported by research and clinical guide- example (11, 79, 89, 208). lines related to people with disabilities. One Health-care workers often lack adequate study found that the main reason people with knowledge and skills on primary and second- spinal cord injury were not prescribed medica- ary and co-morbid conditions associated with tion for osteoporosis was because general prac- disability and how to effectively manage the titioners lacked evidence-based guidelines (30). health care needs of people with disabilities (89, The presence of a particular health condi- 154, 209). Service providers may be unsure how tion is not sufficient to determine capacity (211). to address health needs directly related to a dis- The assumption that people with certain condi- ability and how to distinguish between health tions lack capacity is unacceptable, according problems related and unrelated to a disability, to Article 12 of the CRPD. Denying people and may not understand the need for compre- with disabilities the right to exercise their legal hensive health care services (96). capacity may prevent them from taking an Undergraduate training programmes for active role in their own health care. The way health-care workers rarely address the health forward is supported decision-making, rather needs of people with disabilities, for example than guardianship or other forms of substitute (11, 145), and general practitioners frequently decision-making (see Box 3.6). indicate that a lack of training influences their Education and training for health care ability to provide health care for people with workers about disability is an important pri- disabilities (143). ority to increase awareness about the health Limited knowledge and understanding of care needs of people with disabilities and disability among health-care providers often improve access to services (89, 127, 142, 143, prevents timely and effective coordination of 209, 217). Health-care workers should be health care services (96, 154), sometimes lead- taught the causes, consequences, and treat- ing to inadequate examinations and uncom- ment of disabling conditions, and of the incor- fortable and unsafe experiences for people rect assumptions about disabilities that result with disabilities (210). Variations in treatment from stigmatized views about people with dis- can be wide where health-care providers are abilities (145, 150, 154). Box 3.6. Sexual and reproductive rights of persons with disabilities The United Nations Convention on the Rights of Persons with Disabilities (CRPD) specifies that persons with dis- abilities enjoy legal capacity on an equal basis with others (Article 12), have the right to marry and found a family and retain their fertility (Article 23), and have access to sexual and reproductive health care (Article 25). The prejudice that people with disabilities are asexual or else that they should have their sexuality and fertility controlled is widespread (77). There is evidence that people with disabilities are sexually active (212), so access to sex education is important to promote sexual health and positive experiences of sex and relationships for all people with disabilities. Despite legal prohibitions, there are many cases of involuntary sterilization being used to restrict the fertility of some people with a disability, particularly those with an intellectual disability, almost always women (213–216). Sterilization may also be used as a technique for menstrual management. Involuntary sterilization of persons with disabilities is contrary to international human rights standards. Persons with disabilities should have access to voluntary sterilization on an equal basis with others. Furthermore, sterili- zation is almost never the only option for menstrual management or fertility control (214). Nor does it offer any protection against sexual abuse or sexually transmitted diseases. Legal frameworks and reporting and enforcement mechanisms need to be put in place to ensure that, whenever sterilization is requested, the rights of persons with disabilities are always respected above other competing interests. 78 Chapter 3 General health care A survey of general practitioners in France about what worked and what did not in the recommends the introduction of disability medical setting and in patient-provider courses into medical school curriculums, rel- relationships (221). evant continuing education, and provision of ■ Introductory courses for students enrolled adequate resources (157). In one innovative in the first occupational therapy and approach to education and training, people post-diploma management courses in the with disabilities educate students and health Russian Federation, developed and taught care providers on a wide range of disability by the All-Russian Society of the Disabled, issues, including discriminatory attitudes successfully developed positive attitudes in and practices, communication skills, physical the students (222). accessibility, the need for preventive care, and ■ A study to determine whether a change the consequences of poor care coordination in curriculum affected nursing student’s (145, 154). Training delivered by people with attitudes towards people with disabilities physical, sensory, and mental health impair- showed that their attitudes were more posi- ments may improve knowledge of issues expe- tive at the completion of their senior year rienced by people with disabilities (142). (223). Integrate disability education Provide health-care workers into undergraduate training with continuing education Educators are increasingly teaching students Many health-care workers acknowledge a need about communicating with patients, including for continuing education about disability (143). people with disabilities (144), and many stud- In one study service providers described spe- ies have reported successful outcomes across a cific educational needs, including information range of health professionals: about how to access disability resources, coor- ■ A study of Australian fourth-year under- dinate care, make reasonable accommodations graduate medical students indicated a for people with disabilities, address sexuality significant change in attitudes towards and reproductive health needs, and complete people with developmental disabilities fol- forms for disability status (209). Evidence from lowing a three-hour communication skills the United Kingdom found that while practice workshop (218). nurses in primary health care generally had ■ In a United States study, third-year medical positive attitudes towards working with people students reported that they felt less “awk- with intellectual impairment, they regarded ward” and “sorry for” people with disabili- training in this area as a priority (224). ties after attending a 90-minute education The Rehabilitation Council of India imple- session (219). mented a national programme (1999–2004) to ■ A study found that medical students educate medical officers working in primary educated by individuals with disabilities health care centres about disability issues. helped students to learn how disability Objectives included disseminating knowledge affects treatment plans, and helped stu- about prevention, health promotion, early iden- dents reflect on, and recognize, attitudes tification, treatment, and rehabilitation; raising about disability (220). awareness about services for people with dis- ■ A study of fourth-year medical students abilities; and sensitizing officers about general used panel presentations led by individu- disability issues such as legislation and human als with disabilities. Students reported that rights. On conclusion of the programme 18 657 they valued hearing about the personal medical officers from a baseline figure of 25 506 experiences of people with disabilities, and had received training (225). 79 World report on disability Support health care workers available, and information to determine with adequate resources the extent of health disparities experienced Evidence-based clinical practice guidelines can by people with disabilities is limited (233). support health professionals in providing appro- Surveillance systems do not often disaggregate priate health care to people with disabilities. For data based on disability, and people with dis- example, the Clinical guidelines and integrated abilities are also often excluded from trials that care pathways for the oral health care of people seek scientific evidence for the outcomes of a with learning disabilities (226) helps health pro- health intervention (234, 235). Often, eligibility fessionals to improve the oral health of people criteria prevent the participation of people with with learning impairments. The manual Table disabilities (11) as their primary conditions may manners and beyond describes and provides be seen as “confounders” to research questions. pictures of alternative examination positions Certain barriers – transport, for example – may to assist clinicians in gynaecological examina- also sometimes limit opportunities for people tions for women with disabilities (132). Resource with disabilities to participate in research (236). directories can also assist health workers to refer A recent exercise on research priorities patients to specialists, and link people with dis- determined that the identification of barriers abilities to community-based services includ- in mainstream health care, and strategies for ing exercise programmes, self-help groups, and overcoming barriers, were the highest priorities home-care agencies. Disseminated to a wide (164). Other priorities included prevention of audience including health care workers, the secondary conditions and early detection and Directory of disability services in Malawi details referral of health problems through primary all disability-focused organizations, groups, and health care. Some of the relevant areas for health services in Malawi (227). research and data collection are outlined below. Filling gaps in data and research Health services research Data needed to strengthen health care systems Evidence leads to better decisions and better include: health outcomes (228, 229). Reliable informa- ■ number of people with disabilities tion is essential for increasing public aware- ■ health status of people with disabilities (11) ness of health issues, informing planning and ■ social and environmental factors influenc- policy, and allocating resources to reduce ing the health of people with disabilities disparities (230). Therefore, data and research ■ responsiveness of health care systems to are critical for providing information to help people with disabilities understand the factors that determine health ■ use of health care services by people with status, to develop policy, to guide implemen- disabilities tation, and to monitor health care services for ■ need, both met and unmet, for care (237). people with disabilities – and in doing these things to strengthen health care systems (231). People with disabilities should be included in A lack of data and research evidence can create all general health care surveillance (233), and data a significant barrier for policy-makers and on people with disabilities should be disaggre- decision-makers, which in turn can influence gated. A good example at the state level is the the ability of people with disabilities to access Centers for Disease Control and Prevention mainstream health services. Behavioural Risk Factor Surveillance System The availability of data related to people (BRFSS), which includes two general disability iden- with disabilities varies greatly between coun- tifier questions to ensure provision of state-specific tries (232). Few sources of national data are disability data (233). Research should also focus on 80 Chapter 3 General health care the quality and structure of health care systems, commissioning and monitoring research examining, for example, reasonable accommoda- (99, 235, 241). In the United Kingdom the tions needed for people with disabilities. Quality Research in Dementia Network involves 180 patients and caregivers pri- Research related to health conditions oritizing research, allocating funds to associated with disability medical research, monitoring projects, Preventing secondary conditions related to and assessing outcomes (242). Patient and existing disabilities is an important priority. public involvement can improve the qual- Preliminary results from a systematic review ity and impact of research, but barriers to of health promotion interventions for people access must be removed so people with dis- with disabilities indicates that research in this abilities can attend health consultations or area is a growing field and that there is evidence research meetings (235). of effective interventions (238). But stronger ■ The International Classification of Funct- research designs require precise dosing for ioning, Disability and Health (ICF) – which intervention, and research and multicentre uses accepted and understood terminol- trials will increase recruitment and the ability ogy, language, and concepts – can ensure to generalize findings (237). consistency across studies and settings, Ensuring the relevance and applicability thus removing these as barriers to progress of general clinical research to people with dis- in disability and health research and public abilities, given evidence of high co-morbidity policy (9). rates, is also important. For example, the ■ A range of research methods are needed increased risk of people with schizophrenia for including clinical trials, observational and diabetes and cardiovascular disease requires epidemiological studies, health services monitoring and management (239), but genetic research, surveys, and social and behav- research to understand metabolic mechanisms ioural studies. Well designed, qualitative is also recommended (240). research can be used to investigate the full Relevant strategies for inclusive health range of barriers and document good prac- research as well as improving comparability, tices (243). quality, and disability research capacity include: ■ Capacity building, research tools, and ■ Organizations funding research could research training on disability are needed. routinely require researchers to include Good instruments are particularly impor- people with disabilities in their popula- tant for disability outcome research given tion samples. Despite challenges, rand- evidence that people with disabilities omized controlled trials with people with often perceive health status and quality of intellectual impairment are possible (172). life differently than people without dis- Researchers should be required to justify abilities (243). restricted eligibility criteria on scientific grounds (11). People with intellectual disabilities, people who face communica- Conclusion and tion barriers, and others with low levels recommendations of literacy may need support completing survey instruments or participating in People with disabilities experience health dis- interviews (17, 235). parities and greater unmet needs in comparison ■ People with disabilities can actively par- to the general population. All countries need ticipate in research, as researchers them- to work towards removing barriers and making selves, as participants in consultations or existing health care systems more inclusive and advisory groups, or playing a central role in accessible to people with disabilities. 81 World report on disability This chapter has identified several strate- ■ Establish health care standards related to gies to ensure that persons with disabilities care of persons with disabilities and frame- can achieve their highest attainable standard works and enforcement mechanisms to of health including: financial measures to ensure standards are met. improve coverage and affordability; measures ■ Involve people with disabilities in audits to improve service delivery, including training and related development and implementa- of health-care personnel; measures to empower tion of policies and services. people with disabilities to improve their own health; and measures to improve research Financing and affordability and data to monitor, evaluate, and strengthen health systems. A range of strategies are needed ■ Ensure that people with disabilities benefit to close the gap in access to health care between equally from public health care programmes. people with and without disabilities. Given the ■ In countries where private health insur- limited evidence available on the efficacy of ance dominates health care financing, some of these strategies across different con- ensure that people with disabilities are not texts and groups, costs and health outcomes denied insurance and consider measures to must be carefully evaluated. make the premiums affordable for people In realizing the recommendations sum- with disabilities. marized below, a broad range of stakeholders ■ Use financial incentives to encourage have roles to play. Governments should develop, health-care providers to make services implement, and monitor policies, regulatory accessible and provide comprehensive mechanisms, and standards for health care pro- assessments, evidence-based treatment, vision to ensure that they include people with and follow-ups. disabilities. Service providers should provide the ■ In low-income and middle-income coun- highest quality of health services. Service users, tries, where effective primary care and disabled people’s organizations, and professional mechanisms of disbursement exist, consider organizations should increase awareness, partic- targeted conditional cash transfer schemes ipate in policy development, and monitor imple- linked to the use of health care to improve mentation of policies and services. Through affordability and the use of services. international cooperation, good and promising ■ Consider options for reducing or removing practices can be shared and technical assistance out-of-pocket payments for people with provided to countries to strengthen existing poli- disabilities who do not have other means cies, system, and services. of financing health care services. ■ Consider providing support to meet the Policy and legislation indirect costs associated with accessing health care, such as transport. ■ Assess existing policies, systems, and ser- vices, including an analysis of the needs, Service delivery experiences, and views of people with disabilities, identify gaps and priorities ■ Empower people with disabilities to maxi- to reduce health inequalities and plan mize their health by providing informa- improvements for access and inclusion. tion, training, and peer support. Where ■ Make required changes in policies, systems, appropriate, include family members. and services to comply with the CRPD. ■ Provide a broad range of reasonable accommodations. 82 Chapter 3 General health care ■ Support primary health-care workers with ■ Involve people with disabilities as providers specialists, who may be located elsewhere. of education and training wherever possible. ■ Explore the options for use of communi- ■ Provide evidence-based guidelines for cation and information technologies for assessment and treatment emphasizing improving services, health care capacity, patient-centred care. and information access to persons with ■ Train community workers so that they disabilities. can play a role in screening and preventive ■ Identify groups who require alternative ser- health care services. vice delivery models, for example, targeted services, care coordination to improve Data and research access to health care. ■ In high-income countries incorporate dis- ■ In health and disability related research use ability access and quality standards into the ICF, to provide a consistent framework. contracts with public, private, and volun- ■ Conduct more research on the needs, bar- tary service providers. riers to general health care, and health out- ■ Promote community-based rehabilitation, comes for people with specific disabilities. specifically in less-resourced settings, ■ Establish monitoring and evaluation sys- to facilitate access for disabled people to tems to assess interventions and long-term existing services. health outcomes for people with disabilities. ■ Include people with disabilities in research Human resources on general health care services. ■ Include people with disabilities in health ■ Integrate disability education into under- care surveillance by using disability iden- graduate and continuing education for all tifiers - see Chapter 2 for more information. health care professionals. 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(http://alzheimers.org.uk, accessed 30 September 2010). 243. Jette AM, Keysor JJ. Uses of evidence in disability outcomes and effectiveness research. The Milbank Quarterly, 2002,80:325- 345. doi:10.1111/1468-0009.t01-1-00006 PMID:12101875 92 Chapter 4 “Being an amputee myself with functional lower limb prosthetics, I can say that the device enable me to function normally. My prosthetics brought back my confidence and self esteem to participate in mainstream activities of the society, thus changing my outlook in life to positive to more positive. Definitely, my prosthetics had an impact on my present status or the quality of life I am enjoying now because I basically perform all the task that is assigned to me which at the end the day results to quality output and good pay.” Johnny “Coming from a country where there is not much awareness and resources for dealing with post-spinal cord injured victims, my return home was indeed an enormous chal- lenge. Living in a house that was inaccessible, members of my family have had to perse- vere with daily lifting me up and down the house. Physiotherapy had become a crucial necessity and as a result of the continuous costs incurred, my mother took up the task to administer physiotherapy as well as stand in as my caretaker. During my rehabilitation process, getting admitted for treatment during times of illness or to use physiotherapy facilities was close to impossible as a result of the overwhelming numbers on the waiting list. My rehabilitation period despite challenging was a humbling moment of my life and a continuous process that I face until today. I have learned disability is not inability and a strong mentality and great attitude have been very important!” Casey “Families find themselves in difficulty after a member of the family has a stroke. I consider myself a stroke survivor but my family are stroke victims. I have been fortunate and have been able to return to work, but I have had to battle all the way. We do not get the help we need, services are so variable and there is not enough speech and language therapy and physiotherapy. After my stroke I had to learn to do everything again, includ- ing swallowing and to learn to talk. The first thing that came back to me with my speech was swearing, my first sentence had four expletives in it, but I am told that was normal.” Linda “If you don’t have a proper wheelchair, that is when you really feel that you are disa- bled. But if you have a proper wheelchair, which meets your needs and suits you, you can forget about your disability.” Faustina 4 Rehabilitation Rehabilitation has long lacked a unifying conceptual framework (1). Historically, the term has described a range of responses to disability, from interventions to improve body function to more comprehensive measures designed to promote inclusion (see Box 4.1). The International Classification of Functioning, Disability and Health (ICF) provides a framework that can be used for all aspects of rehabilitation (11–14). For some people with disabilities, rehabilitation is essential to being able to participate in education, the labour market, and civic life. Rehabilitation is always voluntary, and some individuals may require support with decision-making about rehabilitation choices. In all cases rehabilitation should help to empower a person with a disability and his or her family. Article 26, Habilitation and Rehabilitation, of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) calls for: “… appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”. The Article further calls on countries to organize, strengthen, and extend comprehensive rehabilitation services and programmes, which should begin as early as possible, based on multidisciplinary assessment of individual needs and strengths, and including the provision of assistive devices and technologies. This chapter examines some typical rehabilitation measures, the need and unmet need for rehabilitation, barriers to accessing rehabilitation, and ways in which these barriers can be addressed. Understanding rehabilitation Rehabilitation measures and outcomes Rehabilitation measures target body functions and structures, activities and participation, environmental factors, and personal factors. They contribute 95 World report on disability Box 4.1. What is rehabilitation? This Report defines rehabilitation as “a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments”. A distinction is sometimes made between habilitation, which aims to help those who acquire disabilities con- genitally or early in life to develop maximal functioning; and rehabilitation, where those who have experienced a loss in function are assisted to regain maximal functioning (2). In this chapter the term “rehabilitation” covers both types of intervention. Although the concept of rehabilitation is broad, not everything to do with disability can be included in the term. Rehabilitation targets improvements in individual functioning – say, by improving a person’s ability to eat and drink independently. Rehabilitation also includes making changes to the individual’s environment – for example, by installing a toilet handrail. But barrier removal initiatives at societal level, such as fitting a ramp to a public building, are not considered rehabilitation in this Report. Rehabilitation reduces the impact of a broad range of health conditions. Typically rehabilitation occurs for a specific period of time, but can involve single or multiple interventions delivered by an individual or a team of rehabilitation workers, and can be needed from the acute or initial phase immediately following recognition of a health condition through to post-acute and maintenance phases. Rehabilitation involves identification of a person’s problems and needs, relating the problems to relevant factors of the person and the environment, defining rehabilitation goals, planning and implementing the measures, and assessing the effects (see figure below). Educating people with disabilities is essential for developing knowledge and skills for self-help, care, management, and decision-making. People with disabilities and their families experi- ence better health and functioning when they are partners in rehabilitation (3–9). The rehabilitation process Identify problems and needs Relate problems Assess effects to modifiable and limiting factors Define target problems Plan, implement, and and target mediators, coordinate interventions select appropriate measures Source: A modified version of the Rehabilitation Cycle from (10). Rehabilitation – provided along a continuum of care ranging from hospital care to rehabilitation in the com- munity (12) – can improve health outcomes, reduce costs by shortening hospital stays (15–17), reduce disability, and improve quality of life (18–21). Rehabilitation need not be expensive. Rehabilitation is cross-sectoral and may be carried out by health professionals in conjunction with specialists in education, employment, social welfare, and other fields. In resource-poor contexts it may involve non-specialist work- ers – for example, community-based rehabilitation workers in addition to family, friends, and community groups. Rehabilitation that begins early produces better functional outcomes for almost all health conditions associated with disability (18–30). The effectiveness of early intervention is particularly marked for children with, or at risk of, developmental delays (27, 28, 31, 32), and has been proven to increase educational and developmental gains (4, 27). 96 Chapter 4 Rehabilitation to a person achieving and maintaining optimal maintaining relationships. Rehabilitation functioning in interaction with their environ- might mean drug treatment, education of ment, using the following broad outcomes: patients and families, and psychological ■ prevention of the loss of function support via outpatient care, community- ■ slowing the rate of loss of function based rehabilitation, or participation in a ■ improvement or restoration of function support group. ■ compensation for lost function ■ A child who is deafblind. Parents, teachers, ■ maintenance of current function. physical and occupational therapists, and other orientation and mobility specialists Rehabilitation outcomes are the ben- need to work together to plan accessible and efits and changes in the functioning of stimulating spaces to encourage develop- an individual over time that are attribut- ment. Caregivers will need to work with the able to a single measure or set of measures child to develop appropriate touch and sign (33). Traditionally, rehabilitation outcome communication methods. Individualized measures have focused on the individual’s education with careful assessment will help impairment level. More recently, outcomes learning and reduce the child’s isolation. measurement has been extended to include individual activity and participation out- Limitations and restrictions for a child comes (34, 35). Measurements of activity and with cerebral palsy, and possible rehabilitation participation outcomes assess the individual’s measures, outcomes, and barriers are described performance across a range of areas – includ- in Table 4.1. ing communication, mobility, self-care, edu- Rehabilitation teams and specific disci- cation, work and employment, and quality of plines may work across categories. Rehabilita- life. Activity and participation outcomes may tion measures in this chapter are broadly also be measured for programmes. Examples divided into three categories: include the number of people who remain in ■ rehabilitation medicine or return to their home or community, inde- ■ therapy pendent living rates, return-to-work rates, ■ assistive technologies. and hours spent in leisure and recreational pursuits. Rehabilitation outcomes may also be Rehabilitation medicine measured through changes in resource use – for example, reducing the hours needed each Rehabilitation medicine is concerned with week for support and assistance services (36). improving functioning through the diagnosis The following examples illustrate different and treatment of health conditions, reduc- rehabilitation measures: ing impairments, and preventing or treating ■ A middle-aged woman with advanced complications (12, 37). Doctors with specific diabetes. Rehabilitation might include expertise in medical rehabilitation are referred assistance to regain strength following to as physiatrists, rehabilitation doctors, or her hospitalization for diabetic coma, the physical and rehabilitation specialists (37). provision of a prosthesis and gait training Medical specialists such as psychiatrists, pae- after a limb amputation, and the provision diatricians, geriatricians, ophthalmologists, of screen-reader software to enable her to neurosurgeons, and orthopaedic surgeons can continue her job as an accountant after sus- be involved in rehabilitation medicine, as can a taining loss of vision. broad range of therapists. In many parts of the ■ A young man with schizophrenia. The man world where specialists in rehabilitation medi- may have trouble with routine daily tasks, cine are not available, services may be provided such as working, living independently, and by doctors and therapists (see Box 4.2). 97 98 Table 4.1. Child with cerebral palsy and rehabilitation Difficulties faced Rehabilitation measures Possible outcomes Potential barriers People involved in the by the child measures Unable to care for Therapy – Parents better able to care for – Timeliness of interventions. – The child, parents, siblings, self – Training for the child on different ways to their child and be proactive. – Availability of family and and extended family. complete the task. – Reduced likelihood of support. – Depending on the setting – Assessment and provision of equipment, compromised development, – Financial capacity to pay and resources available: training parents to lift, carry, move, feed and deformities, and contractures. for services and equipment. physiotherapists, occupational World report on disability otherwise care for the child with cerebral palsy. – Reduced likelihood of – Availability of well trained therapists, speech and – Teaching parents and family members to use respiratory infections. staff. language therapists, orthotists and maintain equipment. – Access to support groups or – Attitudes and understand- and technicians, doctors, – Provision of information and support for peer support. ing of others involved in the psychologists, social workers, parents and family. – Coping with stress and other rehabilitation measure. community-based rehabilita- – Counselling the family. psychological demands. – Physical access to home tion workers, schoolteachers, Assistive technology – Better posture, respiration, environment, community, teaching assistants. – Provision of equipment for maintaining pos- feeding, speech, and physical equipment, assistive devices tures and self-care, playing and interaction, such activity performance. and services. as sitting or standing (when age-appropriate) Difficulty walking Rehabilitation medicine – Decreased muscle tone, better – Access to post-acute – Doctor, parents, therapist, – Botulinum toxin injections. biomechanics of walking. rehabilitation. orthotist. – Surgical treatment of contractures and – Decrease in self-reported deformities (therapy interventions usually limitations. complement these medical interventions). – Increased participation in Therapy education and social life. – Therapy, exercises and targeted play activities to train effective movements. Assistive technology – Orthotics, wheelchair or other equipment. Communication Therapy – Better communication skills. – Availability of speech – Parents, speech and difficulties – Audiology. – Participation in social, language therapists. language pathologist/thera- – Activities for language development. educational and occupational – Social and economic status pist, communication disorders – Conversation skills. life opportunities. of the family. assistant, community-based – Training conversation partners. – Improved relationships with – Costs of purchasing and rehabilitation worker, teachers, Assistive technology family, friends, and the wider maintaining devices. and assistants. – Training to use and maintain aids and community. equipment, which may include hearing aids and – Reduced risk of distress, augmentative and alternative communication educational failure, and   devices. antisocial behaviour. Note: The table shows some potential rehabilitation measures for a child with cerebral palsy, possible outcomes, potential barriers, and the various people involved in care. Chapter 4 Rehabilitation Box 4.2. Clubfoot treatment in Uganda Clubfoot, a congenital deformity involving one or both feet, is commonly neglected in low and middle-income countries. If left untreated, clubfoot can result in physical deformity, pain in the feet, and impaired mobility, all of which can limit community participation, including access to education. In Uganda the incidence of clubfoot is 1.2 per 1000 live births. The condition is usually not diagnosed, or if diagnosed it is neglected because conventional invasive surgery treatment is not possible with the resources available (38). The Ponseti clubfoot treatment involving manipulation, casting, Achilles tenotomy, and fitting of foot braces has proven to result in a high rate of painless, functional feet (Ponseti, 1996). The benefits of this approach for devel- oping countries are low cost, high effectiveness, and the possibility to train service providers other than medical doctors to perform the treatment. The results of a clubfoot project in Malawi, where the treatment was conducted by trained orthopaedic clinical officers, showed that initial good correction was achieved in 98% of cases (39). The Ugandan Sustainable Clubfoot Care Project – a collaborative partnership between the Ugandan Ministry of Health, CBM International, and Ugandan and Canadian universities – is funded by the Canadian International Development Agency. Its purpose is to make sustainable, universal, effective, and safe treatment of clubfoot in Uganda using the Ponseti method. It built on the existing health care and education sectors and has incorporated research to inform the project’s activities and evaluate outcomes. The project has resulted in many positive achievements in two years including: ■ The Ugandan Ministry of Health has approved the Ponseti method as the preferred treatment for clubfoot in all its hospitals. ■ 36% of the country’s public hospitals have built the capacity to do the Ponseti procedure and are using the method. ■ 798 health-care professionals received training to identify and treat clubfoot. ■ Teaching modules on clubfoot and the Ponseti method are being used in two medical and three paramedical schools. ■ 1152 students in various health disciplines received training in the Ponseti method. ■ 872 children with clubfoot received treatment, an estimated 31% of infants born with clubfoot during the sample period – very high, given that only 41% of all births occur in a health care centre. ■ Public awareness campaigns were implemented – including radio messages and distribution of posters and pamphlets to village health teams – to inform the general public that clubfoot is correctable. The project shows that clubfoot detection and treatment can quickly be incorporated into settings with few resources. The approach requires: ■ Screening infants at birth for foot deformity to detect the impairment. ■ Building the capacity of health-care professionals across the continuum of care, from community midwives screening for deformity, to NGO technicians making braces, and orthopaedic officers performing tenotomies. ■ Decentralizing clubfoot care services, including screening in the community, for example through community- based rehabilitation workers, and treatment in local clinics, to address treatment adherence barriers. ■ Incorporating Ponseti method training into the education curricula of medical, nursing, paramedical, and infant health-care students. ■ Establishing mechanisms to address treatment adherence barriers including travel distance and costs. 99 World report on disability Rehabilitation medicine has shown posi- ■ modifications to the environment tive outcomes, for example, in improving joint ■ provision of resources and assistive and limb function, pain management, wound technology. healing, and psychosocial well-being (40–47). Convincing evidence shows that some Therapy therapy measures improve rehabilitation out- comes (see Box  4.3). For example, exercise Therapy is concerned with restoring and com- therapy in a broad range of health conditions pensating for the loss of functioning, and pre- – including cystic fibrosis, frailness in elderly venting or slowing deterioration in functioning people, Parkinson disease, stroke, osteoar- in every area of a person’s life. Therapists and thritis in the knee and hip, heart disease, and rehabilitation workers include occupational low back pain – has contributed to increased therapists, orthotists, physiotherapists, pros- strength, endurance, and flexibility of joints. thetists, psychologists, rehabilitation and tech- It can improve balance, posture, and range of nical assistants, social workers, and speech and motion or functional mobility, and reduce the language therapists. risk of falls (49–51). Therapy interventions have Therapy measures include: also been found to be suitable for the long-term ■ training, exercises, and compensatory care of older persons to reduce disability (18). strategies Some studies show that training in activities of ■ education daily living have positive outcomes for people ■ support and counselling with stroke (52). Box 4.3. Money well spent: The effectiveness and value of housing adaptations Public spending on housing adaptations for people with difficulties in functioning in the United Kingdom of Great Britain and Northern Ireland amounted to more than £220 million in 1995, and both the number of demands and unit costs are growing. A 2000 research study examined the effectiveness of adaptations in England and Wales, using interviews with recipients of major adaptations, postal questionnaires returned by recipients of minor adaptations, administrative records, and the views of visiting professionals. The main measure of “effectiveness” was the degree to which the problems experienced by the respondent before adaptation were overcome by the adaptation, without causing new problems. The study found that: ■ Minor adaptations (rails, ramps, over-bath showers, and door entry systems, for example) – most costing less than £500 – produced a range of lasting, positive consequences for virtually all recipients: 62% of respondents suggested they felt safer from the risk of accident, and 77% perceived a positive effect on their health. ■ Major adaptations (bathroom conversions, extensions, lifts, for example) in most cases had transformed people’s lives. Before adaptations, people used words like “prisoner”, “degraded”, and “afraid’ to describe their situations; following adaptations, they spoke of themselves as “independent”, “useful”, and “confident”. ■ Where major adaptations failed, it was typically because of weaknesses in the original specification. Adaptations for children sometimes failed to allow for the child’s growth, for example. In other cases, policies intended to save money resulted in major waste. Examples included extensions that were too small or too cold to use, and cheap but ineffective substitutes for proper bathing facilities. ■ The evidence from recipients suggests that successful adaptations keep people out of hospitals, reduce strain on carers, and promote social inclusion. ■ Benefits were most pronounced where careful consultation with users took place, where the needs of the whole family had been considered, and where the integrity of the home had been respected. Adaptations appear to be a highly effective use of public resources, justifying investment in health and rehabilita- tion resources. Further research is needed in diverse contexts and settings. Source (48). 100 Chapter 4 Rehabilitation Distance training was used in Bangladesh (60). For people in the United Kingdom with for mothers of children with cerebral palsy in disabilities resulting from brain injuries, tech- an 18-month therapy programme: it promoted nologies such as personal digital assistants, and the development of physical and cognitive simpler technologies such as wall charts, were skills and improved motor skills in the chil- closely associated with independence (61). In a dren (53). Counselling, information, and train- study of Nigerians with hearing impairments, ing on adaptive methods, aids, and equipment provision of a hearing aid was associated with have been effective for individuals with spinal improved function, participation and user sat- cord injury and younger people with disabili- isfaction (62). ties (54–56). Many rehabilitation measures help Assistive devices have also been reported to people with disabilities to return or continue to reduce disability and may substitute or supple- work, including adjusting the content or sched- ment support services – possibly reducing care ule of work, and making changes to equipment costs (63). In the United States of America, data and the work environment (57, 58). over 15 years from the National Long-Term Care Survey found that increasing use of technology Assistive technologies was associated with decreasing reported disabil- ity among people aged 65 years and older (64). An assistive technology device can be defined Another study from the United States showed as “any item, piece of equipment, or product, that users of assistive technologies such as whether it is acquired commercially, modified, mobility aids and equipment for personal care or customized, that is used to increase, main- reported less need for support services (65). tain, or improve the functional capabilities of In some countries, assistive devices are individuals with disabilities” (59). an integral part of health care and are pro- Common examples of assistive devices are: vided through the national health care system. ■ crutches, prostheses, orthoses, wheel- Elsewhere, assistive technology is provided by chairs, and tricycles for people with mobil- governments through rehabilitation services, ity impairments; vocational rehabilitation, or special education ■ hearing aids and cochlear implants for agencies (66), insurance companies, and chari- those with hearing impairments; table and nongovernmental organizations. ■ white canes, magnifiers, ocular devices, talking books, and software for screen Rehabilitation settings magnification and reading for people with visual impairments; The availability of rehabilitation services in dif- ■ communication boards and speech synthe- ferent settings varies within and across nations sizers for people with speech impairments; and regions (67–70). Medical rehabilitation ■ devices such as day calendars with and therapy are typically provided in acute symbol pictures for people with cognitive care hospitals for conditions with acute onset. impairment. Follow-up medical rehabilitation, therapy, and assistive devices could be provided in a wide Assistive technologies, when appropriate to range of settings, including specialized rehabil- the user and the user’s environment, have been itation wards or hospitals; rehabilitation cen- shown to be powerful tools to increase inde- tres; institutions such as residential mental and pendence and improve participation. A study of nursing homes, respite care centres, hospices, people with limited mobility in Uganda found prisons, residential educational institutions, that assistive technologies for mobility created and military residential settings; or single or greater possibilities for community participa- multiprofessional practices (office or clinic). tion, especially in education and employment Longer-term rehabilitation may be provided 101 World report on disability within community settings and facilities such cal evidence together with an examination of as primary health care centres, schools, work- the number, type, and severity of impairments, places, or home-care therapy services (67–70). and the activity limitations and participation restrictions that may benefit from various reha- Needs and unmet needs bilitation measures, can help measure the need for services and may be useful for setting appro- Global data on the need for rehabilitation ser- priate priorities for rehabilitation (87). vices, the type and quality of measures provided, ■ The number of people needing hearing aids and estimates of unmet need do not exist. Data worldwide is based on 2005 World Health on rehabilitation services are often incomplete Organization estimates that about 278 and fragmented. When data are available, com- million people have moderate to profound parability is hampered by differences in defini- hearing impairments (88). In developed tions, classifications of measures and personnel, countries, industry experts estimate that populations under study, measurement meth- about 20% of people with hearing impair- ods, indicators, and data sources – for example, ments need hearing aids (89), suggesting 56 individuals with disabilities, service providers, million potential hearing-aid users world- or programme managers may experience needs wide. Hearing aid producers and distribu- and demands differently (71, 72). tors estimate that hearing aid production Unmet rehabilitation needs can delay dis- currently meets less than 10% of global charge, limit activities, restrict participation, need (88), and less than 3% of the hearing cause deterioration in health, increase depend- aid needs in developing countries are met ency on others for assistance, and decrease annually (90). quality of life (37, 73–77). These negative out- ■ The International Society for Prosthetics comes can have broad social and financial and Orthotics and the World Health implications for individuals, families, and Organization have estimated that people communities (78–80). needing prostheses or orthotics and related Despite acknowledged limitations such as services represent 0.5% of the population the quality of data and cultural variations in in developing countries; and 30 million perception of disabilities, the need for rehabili- people in Africa, Asia, and Latin America tation services can be estimated in several ways. (91) require an estimated 180 000 rehabili- These include data on the prevalence of disabil- tation professionals. In 2005 there were 24 ity; disability-specific surveys; and population prosthetic and orthotic schools in devel- and administrative data. oping countries, graduating 400 trainees Prevalence data on health conditions annually. Worldwide existing training associated with disability can provide infor- facilities for prosthetic and orthotic pro- mation to assess rehabilitation needs (81). As fessionals and other providers of essential Chapter  2 indicated, disability rates correlate rehabilitation services are deeply inad- with the increase in noncommunicable condi- equate in relation to the need (92). tions and global ageing. The need for rehabili- ■ A national survey of musculoskeletal tation services is projected to increase (82, 83) impairment in Rwanda concluded that due to these demographic and epidemiological 2.6% of children are impaired and that factors. Strong evidence suggests that impair- about 80 000 need physical therapy, 50 000 ments related to ageing and many health condi- need orthopaedic surgery, and 10 000 need tions can be reduced and functioning improved assistive devices (93). with rehabilitation (84–86). Higher rates of disability indicate a greater Most of the available data on national potential need for rehabilitation. Epidemiologi- supply and unmet need are derived from 102 Chapter 4 Rehabilitation disability-specific surveys on specific popula- treatment-seeking, while restrictions on who is tions such as: legitimately waiting for services can complicate ■ National studies on living conditions data interpretation (105–107). of people with disabilities conducted in Indicators on the number of people Malawi, Mozambique, Namibia, Zambia, demanding but not receiving services, or and Zimbabwe (94–98) revealed large gaps receiving inadequate or inappropriate ser- in the provision of medical rehabilitation vices, can provide useful planning informa- and assistive devices (see Table 2.5 in tion (108). Data on rehabilitation often are Chapter 2). Gender inequalities in access not disaggregated from other health care to assistive devices were evident in Malawi services, however, and rehabilitation meas- (men 25.3% and women 14.1%) and Zambia ures are not included in existing classification (men 15.7% and women 11.9%) (99). systems, which could provide a framework ■ A survey of physical rehabilitation medicine for describing and measuring rehabilitation. in Croatia, the Czech Republic, Hungary, Administrative data on supply are often frag- Slovakia, and Slovenia found a general lack mented because rehabilitation can take place of access to rehabilitation in primary, sec- in a variety of settings and be performed by ondary, tertiary, and community health different personnel. care settings, as well as regional and socio- Comparing multiple data sources can economic inequalities in access (100). provide more robust interpretations, if a ■ In a study of people identified as disabled common framework like the ICF is used. from three districts in Beijing, China, 75% As an example, the Arthritis Community of those interviewed expressed a need for Research and Evaluation Unit in Toronto a range of rehabilitation services, of which merged administrative data sources to pro- only 27% had received such services (101). file rehabilitation demand and supply across A national Chinese study of the need for all regions of the province of Ontario (109). rehabilitation in 2007 found that unmet The researchers triangulated population need was particularly high for assistive data with the number of health-care workers devices and therapy (102). per region to estimate the number of work- ■ United States surveys report considerable ers per person: they found that the higher unmet needs – often caused by funding concentration of workers in the southern problems – for assistive technologies (103). region did not coincide with the highest areas of demand, causing unmet demand for Unmet need for rehabilitation services can also rehabilitation. be estimated from administrative and population survey data. The supply of rehabilitation services can be estimated from administrative data on the Addressing barriers provision of services, and measures such as wait- to rehabilitation ing times for rehabilitation services can proxy the extent to which demand for services is being met. The barriers to rehabilitation service provi- A recent global survey (2006–2008) of sion can be overcome through a series of vision services in 195 countries found that actions, including: waiting times in urban areas averaged less than ■ reforming policies, laws, and delivery sys- one month, while waiting times in rural areas tems, including development or revision of ranged from six months to a year (104). Proxy national rehabilitation plans; measures may not always be reliable. In the case ■ developing funding mechanisms to of waiting times, for instance, lack of awareness address barriers related to financing of of services and beliefs about disability influence rehabilitation; 103 World report on disability ■ increasing human resources for rehabilita- countries, can reduce access to rehabili- tion, including training and retention of tation and quality of services (111). In a rehabilitation personnel; survey on the reasons for not using needed ■ expanding and decentralizing service health facilities in two Indian states, 52.3% delivery; of respondents indicated that no health- ■ increasing the use and affordability of tech- care facility in the area was available (112). nology and assistive devices; Other countries lack rehabilitation services ■ expanding research programmes, includ- that have proven effective at reducing long- ing improving information and access to term costs, such as early intervention for good practice guidelines. children under the age of 5 (5, 113–115). A study of users of community-based reha- bilitation (CBR) in Ghana, Guyana, and Reforming policies, laws, Nepal showed limited impact on physical and delivery systems well-being because CBR workers had dif- ficulties providing physical rehabilita- A 2005 global survey (110) of the implementa- tion, assistive devices, and referral services tion of the nonbinding, United Nations Standard (116). In Haiti, before the 2010 earthquake, Rules on the Equalization of Opportunities for an estimated three quarters of amputees Persons with Disabilities found that: received prosthetic management due to the ■ in 48 of 114 (42%) countries that responded lack of availability of services (117). to the survey, rehabilitation policies were ■ Lack of agency responsible to administer, not adopted; coordinate, and monitor services. In some ■ in 57 (50%) countries legislation on reha- countries all rehabilitation is integrated in bilitation for people with disabilities was health care and financed under the national not passed; health system (118, 119). In other countries ■ in 46 (40%) countries rehabilitation pro- responsibilities are divided between differ- grammes were not established. ent ministries, and rehabilitation services are often poorly integrated into the overall system Many countries have good legislation and not well coordinated (120). A report of and related policies on rehabilitation, but the 29 African countries found that many lack implementation of these policies, and the coordination and collaboration among the development and delivery of regional and local different sectors and ministries involved in rehabilitation services, have lagged. Systemic disability and rehabilitation, and 4 of the 29 barriers include: countries did not have a lead ministry (119). ■ Lack of strategic planning. A study of ■ Inadequate health information systems rehabilitation medicine related to physical and communication strategies can con- impairments – excluding assistive technol- tribute to low rates of participation in ogy, sensory impairments, and specialized rehabilitation. Aboriginal Australians disciplines – in five central and eastern have high rates of cardiovascular disease European countries suggested that the but low rates of participation in cardiac lack of strategic planning for services had rehabilitation, for example. Barriers to resulted in an uneven distribution of ser- rehabilitation include poor communica- vice capacity and infrastructure (100). tion across the health care sector and ■ Lack of resources and health infrastruc- between providers (notably between pri- ture. Limited resources and health infra- mary and secondary care), inconsistent structure in developing countries, and in and insufficient data collection processes, rural and remote communities in developed multiple clinical information systems, 104 Chapter 4 Rehabilitation and incompatible technologies (121). Poor must be aware of the policies and programmes communication results in ineffective given the role of rehabilitation in keeping coordination of responsibilities among people with disabilities participating in society providers (75). (133, 134). ■ Complex referral systems can limit access. Where access to rehabilitation ser- National rehabilitation plans vices is controlled by doctors (77), medical and improved collaboration rules or attitudes of primary physicians can obstruct individuals with disabilities Creating or amending national plans on reha- from obtaining services (122). People are bilitation, and establishing infrastructure and sometimes not referred, or inappropriately capacity to implement the plan are critical referred, or unnecessary medical consulta- to improving access to rehabilitation. Plans tions may increase their costs (123–126). should be based on analysis of the current This is particularly relevant to people with situation, consider the main aspects of reha- complex needs requiring multiple rehabili- bilitation provision – leadership, financing, tation measures. information, service delivery, products and ■ Absence of engagement with people with technologies, and the rehabilitation workforce disabilities. The study of 114 countries (135) – and define priorities based on local need. mentioned above did not consult with disa- Even if it is not immediately possible to provide bled people’s organizations in 51 countries, rehabilitation services for all who need them, and did not consult with families of persons a plan involving smaller, annual investments with disabilities about design, implementa- may progressively strengthen and expand the tion, and evaluation of rehabilitation pro- rehabilitation system. grammes in 57 of the study countries (110). Successful implementation of the plan depends on establishing or strengthening Countries that lack policies and legislation mechanisms for intersectoral collaboration. on rehabilitation should consider introducing An interministerial committee or agency for them, especially countries that are signatories to rehabilitation can coordinate across organi- the CRPD, as they are required to align national zations. For example, a Disability Action law with Articles 25 and 26 of the Convention. Council with representatives from the govern- Rehabilitation can be incorporated into general ment, NGOs, and training programmes was legislation on health, and into relevant employ- established in Cambodia in 1997, to support ment, education, and social services legislation, coordination and cooperation across reha- as well as into specific legislation for persons bilitation providers, decrease duplication and with disabilities. improve distribution of services and referral Policy responses should emphasize early systems, and promote joint ventures in train- intervention and use of rehabilitation to enable ing (136). The Council has been very success- people with a broad range of health conditions ful in developing physical rehabilitation and to improve or maintain their level of function- supporting professional training (physical ing, with a specific focus on ensuring participa- therapy, prosthetics, orthotics, wheelchairs, tion and inclusion, such as continuing to work and CBR) (137). Further benefits include (136): (127). Services should be provided as close as ■ joint negotiation for equipment and supplies; possible to communities where people live, ■ sharing knowledge and expertise; including in rural areas (128). ■ continuing education through sharing Development, implementation, and moni- specialist educators, establishing clinical toring of policy and laws should include users education sites, reviewing and revising (see Box 4.4) (132). Rehabilitation professionals curricula, and disseminating information; 105 World report on disability Box 4.4. Reform of mental health law in Italy – closing psychiatric institutions is not enough In 1978 Italy introduced Law No. 180 gradually phasing out psychiatric hospitals and introducing a community- based system of psychiatric care. Social psychiatrist Franco Basaglia was a leading figure behind the new law that rejected the assumption that people with mental illness were a danger to society. Basaglia had become appalled by the inhuman conditions he witnessed as the director of a psychiatric hospital in northern Italy. He viewed social factors as the main determinants in mental illness, and became a champion of community mental health services and beds in general hospitals instead of psychiatric hospitals (129). Thirty years later, Italy is the only country where traditional mental hospitals are prohibited by law. The law comprised framework legislation, with individual regions tasked with implementing detailed norms, methods, and timetables for action. As a result of the law, no new patients were admitted to psychiatric hospitals, and a process of deinstitutionalization of psychiatric inpatients was actively promoted. The inpatient population dropped by 53% between 1978 and 1987, and the final dismantling of psychiatric hospitals was completed by 2000 (130). Treatment for acute problems is delivered in general hospital psychiatric units, each with a maximum of 15 beds. A network of community mental health and rehabilitation centres support mentally ill people, based on a holistic perspective. The organization of services uses a departmental model to coordinate a range of treatments, phases, and professionals. Campaigns against stigma, for social inclusion of people with mental health problems, and empowerment of patients and families have been promoted and supported centrally and regionally. As a consequence of these policies, Italy has fewer psychiatric beds than other countries – 1.72 per 10 000 people in 2001. While Italy has a comparable number of psychiatrists per head of population to the United Kingdom, it has one third the psychiatric nurses and psychologists, and one tenth of the social workers. Italy also has lower rates of compulsory admissions (2.5 per 10 000 people in 2001, compared with 5.5 per 10 000 in England) (131), and lower use of psychotropic drugs than other European countries. “Revolving door” readmissions are evident only in regions with poor resources. Yet Italian mental health care is far from perfect (130). In place of public sector mental hospitals, the government operates small, protected communities or apartments for long-term patients, and private facilities provide long- term care in some regions. But support for mental health varies significantly by region, and the burden of care still falls on families in some areas. Community mental health and rehabilitation services have in some areas failed to innovate, and optimal treatments are not always available. Italy is preparing a new national strategy to reinforce the community care system, face emerging priorities, and standardize regional mental health care performance. Italy’s experience shows that closing psychiatric institutions must be accompanied by alternative structures. Reform laws should provide minimum standards, not just guidelines. Political commitment is necessary, as well as investment in buildings, staff, and training. Research and evaluation is vital, together with central mechanisms for verification, control, and comparison of services. ■ support for the transition from expatriate with disabilities have lower incomes and are professional services to local management. often unemployed, so are less likely to be covered by employer-sponsored health plans or private voluntary health insurance (see Chapter  8). Developing funding If they have limited finances and inadequate mechanisms for rehabilitation public health coverage, access to rehabilitation may also be limited, compromising activity and The cost of rehabilitation can be a barrier for participation in society (138). people with disabilities in high-income as well Lack of financial resources for assis- as low-income countries. Even where funding tive technologies is a significant barrier from governments, insurers, or NGOs is avail- for many (101). People with disabilities able, it may not cover enough of the costs to and their families purchase more than half make rehabilitation affordable (117). People of all assistive devices directly (139). In a 106 Chapter 4 Rehabilitation national survey in India, two thirds of the Netherlands found significant differences assistive technology users reported having between the two countries, thought to result paid for their devices themselves (112). In from differences in country-related health care Haiti, poor access to prosthetic services was systems with respect to prescription and reim- attributed partially to users being unable to bursement rules (141). pay (117). Policy actions require a budget matching the Spending on rehabilitation services is dif- scope and priorities of the plan. The budget for ficult to determine because it generally is not rehabilitation services should be part of the regu- disaggregated from other health care expendi- lar budgets of relevant ministries – notably health ture. Limited information is available on – and should consider ongoing needs. Ideally, the expenditure for the full range of rehabilitation budget line for rehabilitation services would be measures (68, 74, 138). Governments in 41 of separated to identify and monitor spending. 114 countries did not provide funding for assis- Many countries – particularly low-income tive devices in 2005 (110). Even in the 79 coun- and middle-income countries – struggle to tries where insurance schemes fully or partially finance rehabilitation, but rehabilitation is a covered assistive devices, 16 did not cover poor good investment because it builds human capital people with disabilities, and 28 did not cover (36, 142). Financing strategies can improve the all geographical locations (110). In some cases provision, access, and coverage of rehabilitation existing programmes did not cover mainte- services, particularly in low-income and mid- nance and repairs for assistive devices, which dle-income countries. Any new strategy should can leave individuals with defective equipment be carefully evaluated for its applicability and and limit its use (76, 112, 140). One third of the cost–effectiveness before being implemented. 114 countries providing data to the 2005 global Financing strategies may include the following: study did not allocate specific budgets for ■ Reallocate or redistribute resources. rehabilitation services (110). OECD countries Public rehabilitation services should be appear to be investing more in rehabilitation reviewed and evaluated, with resources than in the past, but the spending is still low reallocated effectively. Possible modifica- (120). For example, unweighted averages for all tions include: OECD countries between 2006 and 2008 indi- – changing from hospital or clinic-based cate that public spending on rehabilitation as rehabilitation to community-based part of labour market programmes was 0.02% interventions (74, 83); of GDP with no increase over time (127). – reorganizing and integrating services Health care funding often provides selec- to make them more efficient (26, 74, tive coverage for rehabilitation services – for 143); example, by restricting the number or type – relocating equipment to where it is of assistive devices, the number of therapy most needed (144). visits over a specific time, or the maximum ■ Cooperate internationally. Developed cost (77) – in order to control cost. While cost countries, through their development aid, controls are needed, they should be balanced could provide long-term technical and with the need to provide services to those who financial assistance to developing coun- can benefit. In the United States, government tries to strengthen rehabilitation services, and private insurance plans limit coverage of including rehabilitation personnel devel- assistive technologies and may not replace opment. Aid agencies from Australia, ageing devices until they are broken, some- Germany, Italy, Japan, New Zealand, times requiring a substantial waiting period Norway, Sweden, the United Kingdom, (77). A study of assistive device use by people and the United States have supported such with rheumatic disease in Germany and the activities (145–147). 107 World report on disability ■ Include rehabilitation services in foreign Many countries, developing and developed, aid for humanitarian crises. Conflict and report inadequate, unstable, or nonexistent natural disaster cause injuries and disabili- supplies, (83, 152, 153) and unequal geographic ties and make people with existing disabili- distribution of, rehabilitation professionals (82, ties even more vulnerable – for example, 140). Developed countries such as Australia, after an earthquake there are increased Canada, and the United States report shortages difficulties in moving around due to the of rehabilitation personnel in rural and remote rubble from collapsed buildings and the areas (154–156). loss of mobility devices. Foreign aid should The low quality and productivity of the also include trauma care and rehabilitation rehabilitation workforce in low-income coun- services (135, 142, 148). tries are disconcerting. The training for rehabili- ■ Combine public and private financing. tation and other health personnel in developing Clear demarcation of responsibilities and countries, can be more complex than in devel- good coordination among sectors is needed oped countries. Training needs to consider the for this strategy to be effective. Some ser- absence of other practitioners for consultation vices could be publicly funded but privately and advice and the lack of medical services, provided – as in Australia, Cambodia, surgical treatment, and follow-up care through Canada, and India. primary health care facilities. Rehabilitation ■ Target poor people with disabilities. The personnel working in low-resource settings essential elements of rehabilitation need to require extensive knowledge on pathology, and be identified, publicly funded, and made good diagnostic, problem-solving, clinical deci- available for free to people with low incomes, sion-making, and communication skills (136). as in South Africa (149) and India (8). Physiotherapy services are the ones most ■ Evaluate coverage of health insurance, often available, often in small hospitals (144). A including criteria for equitable access. recent comprehensive survey of rehabilitation in A study in the United States on access to Ghana identified no rehabilitation doctor or occu- physical therapy found that health care pational therapist in the country, and only a few funding sources provided different cover- prosthetists, orthotists, and physical therapists, age for physical therapy services depending resulting in very limited access to therapy and on whether people had cerebral palsy, mul- assistive technologies (68). Services such as speech tiple sclerosis, or spinal cord injury (74). pathology are nearly absent in many countries (144). In India people with speech impairments were much less likely to receive assistive devices Increasing human resources than people with visual impairments (112). for rehabilitation An extensive survey of rehabilitation doctors in sub-Saharan Africa identified only six, all in Global information about the rehabilita- South Africa, for more than 780 million people, tion workforce is inadequate. In many coun- while Europe has more than 10 000 and the United tries national planning and review of human States more than 7000 (142). Discrepancies are resources for health do not refer to rehabilitation also large for other rehabilitation professions: (135). Many lack the technical capacity to accu- 0.04–0.6 psychologists per 100  000 population rately monitor their rehabilitation workforce, in low-income and lower middle-income coun- so data are often unreliable and out-of-date. tries, compared with 1.8 in upper middle-income Furthermore, the terms to describe the work- countries and 14 in high-income countries; and ers vary, proven analytical tools are absent, and 0.04 social workers per 100  000 population in skills and experience for assessing crucial policy low-income countries compared with 15.7 in issues are lacking (150, 151). high-income countries (157). Data from official 108 Chapter 4 Rehabilitation statistical sources showing the large disparities in affect rehabilitation services in some contexts. The supply of physiotherapists are shown in Fig. 4.1, low number of women technicians in India, for and data from a survey by the World Federation of example, may partly explain why women with dis- Occupational Therapists showing the disparities abilities were less likely than men to receive assis- in occupational therapists are shown in Fig. 4.2. tive devices (112). Female patients in Afghanistan The lack of women in rehabilitation profes- can be treated only by female therapists, and men sions, and the cultural attitudes towards gender, only by men. Restrictions on travel for women Fig. 4.1. Physiotherapists per 10 000 population in selected countries 22 20 18 16 14 12 10 8 6 4 2 0 Democratic Republic of the Congo United Kingdom Egypt USA Cote d'Ivoire Myanmar Rwanda Swaziland New Zealand Finland Pakistan Uganda Lesotho Morocco Jordan Burkina Faso Madagascar Indonesia Zimbabwe Nigeria Sri Lanka Togo Cape Verde Namibia Iraq Oman Bahrain Seychelles Tunisia South Africa Canada Australia Mali Mauritius Zambia Senegal Kenya Source (158). Fig. 4.2. Occupational therapists per 10 000 population in selected countries 12 10 8 6 4 2 0 Venezuela (Bolivarian Russian Federation Sweden Slovenia Finland New Zealand Pakistan Thailand Colombia Greece Argentina Czech Republic Canada United Kingdom Bangladesh United Republic of Tanzania India Uganda Sri Lanka Indonesia Jamaica Zimbabwe Trinidad & Tobago Namibia Philippines Iran (Islamic Republic of) Barbados South Africa Republic of Korea Republic of) China, Macao SAR Brazil Singapore Cyprus Ireland Bermuda USA Germany Israel Belgium Norway Australia Iceland Denmark Latvia France Malta Netherlands Kenya Spain Note: Many professional associations collect data on rehabilitation personnel. Professionals are not obliged, however, to be members or to respond to the survey questionnaires. This data was collated from 65 member organizations with a 93% response rate. Source (159). 109 World report on disability prevent female physiotherapists from participat- prosthetics and orthotics, and speech and lan- ing in professional development and training guage, among others (162–165). Professional workshops and limit their ability to make home associations support minimum standards for visits (160). training (162–164, 169). The complexity of working in resource-poor contexts suggests the Expanding education and training importance of either university or strong tech- nical diploma education (136). The feasibility Many developing countries do not have edu- of establishing and sustaining tertiary training cational programmes for rehabilitation profes- needs is determined by several factors includ- sionals. According to the 2005 global survey ing political stability, availability of trained of 114 countries, 37 had not taken action to educators, availability of financial support, train rehabilitation personnel and 56 had not educational standards within the country, and updated medical knowledge of health-care pro- the cost and time for training. viders on disability (110). Low- and middle-income countries such as Differences across countries in the type China, India, Lebanon, Myanmar, Thailand, of training and the competency standards Viet Nam, and Zimbabwe have responded to required influence the quality of services (92, the lack of professional resources by establish- 136, 161). University training for rehabilitation ing mid-level training programmes (92, 170). personnel may not be feasible in all develop- Rehabilitation training times have been short- ing countries because of the academic expertise ened after wars and conflicts when the number required, the time and expense, and the ability of people with impairments has increased of national governments and NGOs to sustain sharply – for example, in the United States the training (162–165). Long-term funding after World War I, and in Cambodia after its commitment from Governments and donors is civil war (126, 136, 171). Mid-level therapists required (136, 166). are also relevant in developed countries: a col- Education for rehabilitation personnel – laborative project in north-eastern England commonly institutional and urban-based – is compensated for difficulties in recruiting not always relevant to the needs of the popu- qualified professionals by training rehabilita- lation, especially in rural communities (167). tion assistants to work alongside rehabilita- In Afghanistan one study found that physical tion therapists (152). therapists with two years of training had dif- Mid-level workers, therapists and techni- ficulty with clinical reasoning and that clinical cians can be trained as multipurpose rehabili- competencies varied, especially for managing tation workers with basic training in a range complex disabilities and identifying their own of disciplines (occupational therapy, physi- training needs (168). cal therapy, speech therapy, for example), or Given the global lack of rehabilitation pro- as profession-specific assistants that provide fessionals, mixed or graded levels of training rehabilitation services under supervision (152, may be required to increase the provision of 170). Prosthetics and orthotics courses meet the essential rehabilitation services. Where graded WHO/ISPO standards in several developing training is used, consideration should be given countries including Afghanistan, Cambodia, to career development and continuing educa- Ethiopia, El Salvador, India, Indonesia, United tion opportunities between levels. Republic of Tanzania, Thailand, Togo, Sri Lanka, University professional education – advo- Pakistan, Sudan, and Viet Nam (see Box 4.5) (92, cated by developed countries and professional 172). A positive side-effect of mid-level train- associations – builds discipline-specific quali- ing is that trained professionals are limited in fications in physical and occupational therapy, their ability to emigrate to developed countries 110 Chapter 4 Rehabilitation Box 4.5. Education in prosthetics and orthotics through the University Don Bosco In 1996 the University Don Bosco in San Salvador, El Salvador, started the first formal training programme for prosthetics and orthotics in Central America, with support from the German Technical Cooperation organization. The University Don Bosco, now the leading institution for prosthetics and orthotics education in Latin America, has graduated about 230 prosthetists and orthotists from 20 countries. Programmes continued to expand even after external funding ended. The university now employs nine full-time prosthetics and orthotics teachers, and cooperates with the International Society for Prosthetics and Orthotics and other international organizations such as the World Health Organization (WHO), other universities, and private companies. Several approaches were instrumental in the success of this training initiative: ■ Strong partnership. An established education institution with strong pedagogical expertise, University Don Bosco was identified to assume overall responsibility for the training. The German Technical Cooperation agency, experienced in developing prosthetics and orthotics training programmes in Asia and Africa, provided the technical and financial support. ■ Long-term vision for sustainable training provision. A six-month orientation phase enabled the different partners to agree on details of project implementation, including objectives, activities, indicators, responsibili- ties, and resources. A 7–10 year strategy enabled the programme to become self-sustaining. ■ Internationally recognized guidelines. All University Don Bosco training programmes have been developed with support from the International Society for Prosthetics and Orthotics, accredited based on the international guidelines for training developed by the Society and by WHO. ■ Capacity building. Technical content was developed and delivered by two advisors from the German Technical Cooperation for the initial three-year training programme (ISPO/WHO Category II). From the first intake of 25 students, two outstanding graduates were selected for postgraduate studies in Germany. Following their return in 2000, responsibilities were gradually transferred from the advisors to the graduates. In 2000 the programme expanded to accept up to 25 students from all over Latin America, and in 2002 additional support from WHO helped establish a distance-learning programme for prosthetist and orthotist personnel with a minimum of five years of experience. The distance-learning programme, available in Spanish, Portuguese, English, and French, is now also offered in Angola and Bosnia and Herzegovina. In 2006 a five-year degree programme in prosthetics and orthotics (ISPO /WHO Category I) was started. ■ Ensuring recruitment. Prosthetic and orthotic technicians and engineers were integrated into the general health system in El Salvador, and support was provided to other countries to establish similar programmes. ■ Choosing appropriate technologies. Identifying and developing appropriate technologies ensured sustain- able provision. (136). Mid-level training is also less expensive, rehabilitation services for specialist treatment and although insufficient by itself, it may be an and referral. option for extending services in the absence of Providing opportunities for people with full professional training (136). disabilities to train as rehabilitation personnel Community-based workers – a third level would broaden the pool of qualified people and of training – shows promise in addressing could benefit patients through improved empa- geographical access (173, 174). They can work thy, understanding, and communication (176). across traditional health and social services boundaries to provide basic rehabilitation Training existing health-care in the community while referring patients personnel in rehabilitation to more specialized services as needed (152, 175). CBR workers generally have minimal The duration of specialist training for doctors training, and rely on established medical and in Physical and Rehabilitation Medicine varies 111 World report on disability across the world: three years in China (Chinese India, Bangladesh, Nepal, and Sri Lanka. But Standards), at least four years in Europe (37), this approach generates only a limited number and five years in the United States (177). Some of graduates, and travel and subsistence increase countries have used shorter courses to meet costs – so it cannot meet the vast personnel the urgent need for rehabilitation doctors: needs of other developing countries. in China, for example, a one-year certificate course in applied rehabilitation, run between Curricula content 1990 and 1997, was developed at Tongji Medical University, Wuhan, graduating 315 doctors Training for rehabilitation personnel should now working across 30 provinces (Nan, per- include an overview of relevant national and sonal communication 2010). international legislation, including the CRPD, Primary health-care workers can benefit that promotes client-centred approaches and from broad rehabilitation training (using the shared decision-making between people with biopsychosocial framework proposed by the ICF) disabilities and professionals (167). (178). In the absence of rehabilitation specialists, The ICF can create a common understand- health staff with appropriate training can help ing among health-care staff, and facilitate meet service shortages or supplement services. communication, the use of assessment tools, For example, nurses and health-care assistants and standardized outcome measures to better can follow up on therapy services (179). Training manage rehabilitation interventions (17, 178). programmes for health-care professionals Tertiary and mid-level education can be should be user-driven, need-based, and relevant made more relevant to the needs of people in to the roles of the professionals (180). rural communities by including content on community needs, using appropriate technolo- Building training capacity gies, and using progressive education methods including active learning and problem-based Academic institutions and universities in orientation (167, 175, 183, 184). Including con- developed countries and international NGOs tent on the social, political, cultural, and eco- – with support from international donors and nomic factors that affect the health and quality in partnership with governments or a local of life of persons with disabilities can make NGO – can build training capacity by helping the curriculum more relevant to the context in train educators and supporting the upgrade of which rehabilitation personnel will work (167, training courses in developing countries (136, 185–187). Studies have also shown that interdis- 142, 181). The Cambodian School of Prosthetics ciplinary team training develops collaboration, and Orthotics, with La Trobe University in reduces staff burnout, improves rehabilitation Australia, recently upgraded a programme implementation, and increases client participa- from Category II (orthopaedic technologist) to tion and satisfaction (188). a bachelor’s degree in Prosthetics and Orthotics using distance education (182). This approach Recruiting and retaining has enabled students to remain in their home rehabilitation personnel country, and is more cost-effective than full- time study in Australia (182). Mechanisms to ensure employment for reha- Where training capacity does not exist bilitation graduates are vital to the future of in one country, regional training centres may graduates and the sustainability of training. provide a transitional solution (see Box  4.5). The WHO code of practice on the recruitment Mobility India trains rehabilitation therapy of health-care workers (189) reflects a com- assistants, and provides specific training in mitment to strengthen health systems glob- prosthetics and orthotics, to students from ally, and to address the unequal distribution 112 Chapter 4 Rehabilitation of health-care workers both within countries for rehabilitation services in both urban and and throughout the world, particularly in sub- rural Cambodia, for example, hospitals cannot Saharan Africa and developing countries. The afford to hire rehabilitation professionals (136). code stresses the need for awareness of local Like other health staff, retaining rehabilita- health care needs in low-income countries, and tion professionals is affected by poor working for promotion of worker exchanges and train- conditions, safety concerns, poor management, ing between countries. conflict, inadequate training, and lack of career Several countries have training pro- development and continuing education oppor- grammes that target potential rehabilitation tunities (68, 175, 190–192). and health students from the local community, International demand for skills also influ- especially in rural or remote areas (190). In ence where rehabilitation workers seek work Nepal the Institute of Medicine accepts local, (190, 193). Health-care workers often relocate mid-level health workers with a minimum from low-income countries to high-income of three years’ experience for medical train- countries, in search of better living standards, ing. The rationale is that locally recruited and political stability, and professional opportuni- trained personnel may be better equipped and ties (82, 144, 194, 195). While most attention prepared for living in the local community has been given to medical and nursing pro- (183). Thailand has used this strategy for rural fessionals, a wave of physical therapists have recruitment and training, adapting it so that also emigrated from developing countries workers are assigned public sector positions in such as Brazil, Egypt, India, Nigeria, and the their home towns (190). Philippines (196, 197). Even where training programmes exist, Long-term retention of personnel, using staff are often difficult to retain, particularly various incentives and mechanisms, is funda- in rural and remote areas. Despite a huge need mental to continuing services (see Table 4.2). Table 4.2. Incentives and mechanisms for retaining personnel Mechanisms Examples Financial rewards Financial bonuses for working in areas of need, or incentives such as subsidized housing, contributions to school fees, housing loans, and the provision of vehicles. In some countries governments subsidize training costs in return for a guaranteed period of service in rural or remote areas. Approaches should be evaluated and compared with the costs of alternative schemes such as the use of temporaries or overseas recruitment (190, 191, 194, 198). Financial incentives for Expatriate rehabilitation professionals from developing countries can contribute significantly to return to service the development of the rehabilitation infrastructure in their home countries. Providing financial incentives requires careful long-term evaluation (198). Career development Opportunities for promotion, recognition of skills and responsibilities, good supervision and support, practical training of resident medical and therapy workers (68, 181). Several countries are encouraging international undergraduate and graduate experience, with employers provid- ing support – such as unpaid leave and subsidized travel costs. Continuing education Opportunities to attend in-service training, seminars and conferences, receive online and and professional postgraduate training courses, and benefit from professional associations that promote quality development in-service training (188, 195). A good work Improvements to building design, ensuring the safety and comfort of the workplace, and environment providing adequate equipment and resources for the work. Supportive and efficient manage- ment practices, including good management of workloads and the recognition of service (175,   190, 191, 194). 113 World report on disability Expanding and decentralizing service provision (primary, secondary, and service delivery tertiary care facilities and community settings) (100, 136, 212). Rehabilitation services are often located too Integration and decentralization are far from where a person with a disability lives therefore beneficial for people with conditions (199–201). Major rehabilitation centres are usu- requiring regular or protracted interventions, ally located in urban areas; even basic therapeu- and for elderly people (213). Evaluation of a pri- tic services often are not available in rural areas mary care-based, low-vision service in Wales, (202, 203). Travelling to secondary or tertiary showed that low-vision assessments increased rehabilitation services can be costly and time- by 51%; waiting time fell from more than six consuming, and public transport is often not months to less than two months; travel time adapted for people with mobility difficulties (77, to the nearest provider was reduced for 80% of 174). In Uganda two studies on clubfoot treat- people; visual disability scores improved sig- ment protocols found a significant association nificantly; and 97% of patients said that they between treatment adherence and the distance found the service helpful (214). patients had to travel to the clinic (38, 204). Some people with disabilities have com- Coordinated multidisciplinary plex rehabilitation needs requiring intensive rehabilitation or expert management in tertiary care settings (see Box 4.6) (77, 207, 208). However the major- Coordination is required to ensure the con- ity of people require fairly low-cost, modest tinuity of care when more than one provider rehabilitation services in primary and second- is involved in rehabilitation (216). The aim of ary health care settings (119, 207). Integrating coordinated rehabilitation is to improve func- rehabilitation into primary and secondary tional outcomes and reduce costs. Evidence health care settings can: has shown that the provision of coordinated, ■ Help coordinate the delivery of rehabilita- multidisciplinary rehabilitation services can be tion services (126), and having an inter- effective and efficient (208). disciplinary health care team under one Multidisciplinary teams can convey many roof can provide essential health care at an rehabilitation benefits to patients. For example, affordable cost (209). multidisciplinary rehabilitation for persons with ■ Improve availability, accessibility, and disabilities associated with obstructive pulmo- affordability (200) which can overcome nary disease has been found to reduce the use of barriers to referral, such as inaccessible health services (217). Multidisciplinary therapy locations, inadequate services, and the high services for elderly people showed that patients’ costs of private rehabilitation (100, 126, 210). ability to engage in activities of daily living ■ Improve patient experience by ensuring improved, and the loss of functioning decreased services are available early and that wait- (6, 218). Using a team approach to improve par- ing time and travelling time are reduced. ticipation in society for young people with phys- Together with patient involvement in ser- ical disabilities has proven cost-effective (219). vice development, this can produce better outcomes, improve compliance with treat- Community-delivered services ment, and increase satisfaction among patients and rehabilitation personnel (211). Community-delivered rehabilitation interven- tions are an important part of the continuum Referral systems are required between dif- of rehabilitation services, and can help improve ferent modes of service delivery (inpatient, out- efficiency and effectiveness of inpatient rehabili- patient, home-based care) and levels of health tation services (220). A systematic review of the 114 Chapter 4 Rehabilitation Box 4.6. Brazil – Simplified rehabilitation programs in a hospital in São Paulo São Paulo has seen a great increase in the number of people with injury-related disabilities. The Orthopaedic and Traumatology Institute at the Clinical Hospital of the Faculty of Medicine, University of São Paulo – a public referral hospital with 162 beds – receives the most severe cases of traumatic injury. Of the 1400 emergency patients admitted each month, about 50 have significant impairments that need extensive long-term rehabili- tation services, including spinal cord injuries, hip fractures in the elderly, limb amputations, and patients with multiple injuries. In the 1980s and 1990s patients with injury-related disability could wait for a year or more before receiving placement at a rehabilitation centre. This delay increased the number of secondary complica- tions – contractures, pressure sores, and infections – which reduced the effectiveness of rehabilitation services when they eventually became available. In response, the Institute at the hospital created the Simplified Rehabilitation Program initially for people with spinal cord injuries, which was later extended to elderly persons with hip fractures and individuals with severe musculoskeletal injuries. The Program aims to prevent joint deformities and pressure sores, promote mobility and wheelchair transfers, manage bladder and bowel issues, control pain, improve self-care independence, and train caregivers (especially for quadriplegics and elderly patients). The rehabilitation team also provides advice about assistive devices and home modifications. It comprises a physiatrist, physiotherapist, and rehabilitation nurse for the orientation work with patients and caregivers. In addition, a psychologist, social assistant, and occupational therapist may be involved for persons with multiple or complex impairments, such as those with quadriplegia. The team does not have its own specific unit in the hospital, but cares for patients on the general wards. The Program is primarily educational and needs no special equipment. It usually starts in the second or third week after injury when the patient has become clinically stable, and continues for the two months that most patients remain in the hospital. Patients return for their first follow-up evaluation 30–60 days after discharge and periodically thereafter as needed. These visits focus on general medical care, prevention of complications, and basic rehabilitative care to maximize function. The Program has had a profound effect on the prevention of secondary complications (see table below). Complications in patients with traumatic spinal cord injuries: comparative data between 1981–1991 and 1999–2008 Complications 1981–1991 (n = 186) 1999–2008 (n = 424) Percentage point reduction Urinary infection 85% 57% 28 Pressure sore 65% 42% 23 Paina 86% 63% 23 Spasticity 30% 10% 20   Joint deformity 31% 8% 23 a Pain is chronic pain that interfered with functional recovery. Note: Patients in the two time periods were fairly comparable in terms of age (mean 29 years before, 35 years after) and gender (70% male before, 84% male after). Etiology differed between the before and after groups, with 54% of patients in the before group having sustained gunshot wounds, compared with only 19% after. Level of injury in the before group was 65% paraplegic and 35% quadriplegic, while the after group was 59% paraplegic and 41% quadriplegic. Sources (205, 206). This example suggests that developing countries with limited resources and large numbers of injuries can benefit from basic rehabilitation strategies, to reduce secondary conditions. This requires: ■ acute care doctors recognizing patients with disabling injuries, and involving the rehabilitation team in their care as early as possible; ■ a small and well trained team in the general hospital; ■ basic rehabilitative care directed towards health promotion and prevention of complications, initiated soon after the acute phase of trauma care; ■ provision of basic equipment and supplies. Source (215). 115 World report on disability Box 4.7. Physical assistance to earthquake victims and rehabilitation service strengthening in Gujarat, India On 26 January 2001 an earthquake measuring 6.9 on the Richter scale struck Gujarat State, India. An estimated 18 000 people were killed and 130 000 people were injured in the Kutchch District of Gujarat, creating a heavy burden on an already fragmented health care system. The response shows that overall care – particularly reha- bilitation services for people with disabilities – can be considerably strengthened affordably and sustainably even in low-income and post-disaster settings. In the wake of the disaster, a partnership between the state government of Gujarat, Handicap International (an international nongovernment organization) and the Blind People’s Association (a local cross-disability NGO) was established to build the capacity of existing services. Tertiary level ■ The project improved equipment and infrastructure for physiotherapy and other aspects of facility-based rehabilitation at the Civil Paraplegic Hospital and in Kutchch. ■ It improved discharge planning for people with disabilities admitted to the Civil Paraplegic Hospital Centre through the training of social workers. ■ Prior to the earthquake no referral system existed. Referral rates improved for people with disabilities from the Civil Hospital to a new community network of 39 disability and development organizations supporting community-based rehabilitation services. District, secondary level ■ The project improved rehabilitation service delivery by providing technical assistance to the Blind People’s Association to establish one secondary-level rehabilitation centre – providing prosthetics and orthotics, and physical therapy (by eight visually impaired physiotherapists) near the new Kutchch District Hospital. Nearly 3000 people received orthopaedic devices, an additional 598 received free assistive devices through the Government assistance scheme, and 208 people were fitted with devices in their homes by physical therapists. The referral centre supported satellite centres for six months after the earthquake. ■ Coordination improved between different levels of government health providers, and between government health providers and nongovernmental organizations, with mechanisms for referral, treatment, and follow-up, which helped ensure access and continuity of service. An individual case record system and a directory of all rehabilitation facilities in and around Kutchch were developed and managed by the primary health care centres. Community level ■ The project strengthened primary health care, training 275 health-care workers to identify people with disabili- ties and provide appropriate interventions and referral. An evaluation eight months after the training showed high knowledge retention, with many workers able to identify children with disabilities under 10 months old. ■ It improved the provision of rehabilitation services at a community health centre through the establishment of a physiotherapy programme. ■ It included the people with disabilities in development initiatives by training 24 community development workers, in 84 of 128 villages, to identify people with disabilities, deliver basic care and refer. ■ It increased the proportion of persons with paraplegia having access to both hospital and community-based rehabilitation services. ■ It increased awareness among community and family members, disabled persons, and professionals about disability prevention and disability management, through publishing eight new awareness materials in the local language. Initial activities in 2001–2002 focused on people with spinal cord injury, and mortality within five years of being discharged from the hospital came down from 60% before the programme to 4% afterwards. As the project became successful, it expanded both geographically and to cover all types of disabilities. It now encompasses the entire state of Gujarat, where disability-related activities have been integrated into all levels of the government-run health care system. Source Handicap International, internal reports. 116 Chapter 4 Rehabilitation effectiveness of community-based interventions ■ Providing individual or group-based edu- to maintain physical function and independence cational, psychological, and emotional sup- in elderly people found that the interventions port services for persons with disabilities reduced the number of falls and admissions and their families. A study of a CBR model to nursing homes and hospitals, and improved for people with chronic schizophrenia in physical function (6). Community-delivered rural India found that while the commu- services also respond to workforce shortages, nity-based rehabilitation model was more geographical population dispersion, changing time- and resource-intensive than outpa- demographics, and technological innovations tient services, it was more efficient, better (175, 221). Efforts to provide rehabilitation more at overcoming economic, cultural, and flexibly are increasing, including through home- geographic barriers, better for programme based services and schools (222). Rehabilitation compliance, and appropriate for resource- services should be provided as close as possible poor settings (211). Another study on CBR to people’s homes and communities (223, 224). in Italy found that people with mental ill- In low-resource, capacity-constrained set- ness experienced improved interpersonal tings, efforts should focus on accelerating the relationships and social inclusion. Very iso- supply of services in communities through CBR lated people also benefited from the close (112, 175), complemented with referral to sec- relationship developed between the patient ondary services (see Box 4.7) (175). Examples and the CBR worker (228). of measures in community-based rehabilita- ■ Involving the community. In Thailand a tion include: study in two rural districts building capac- ■ Identifying people with impairments ity for CBR used group meetings for people and facilitating referrals. CBR workers in with disabilities, their families, and com- Bangladesh were trained as “key inform- munity members to manage rehabilitation ants” to identify and refer children with problems collaboratively (167). visual impairments to specialist eye camps; referrals by the informants accounted for 64% of all referrals to the eye camps. Increasing the use and Children were identified earlier and were affordability of technology more representative of the overall incidence of blindness across the community (225). A subsequent review of 11 similar studies Assistive devices that used Participatory Rural Appraisal and informants to identify disabled children Many people around the world acquire assistive concluded that community-based methods technology on the open market. Access to assis- were consistently less expensive than other tive technology can be improved by improving methods, and that children benefited from economies of scale in purchasing and production longer engagement with subsequent com- to reduce cost. Centralized, large-scale collective munity interventions (226). purchasing, or consortium buying, nationally ■ Delivering simple therapeutic strategies or regionally, can reduce costs. For example, the through rehabilitation workers, or taught General Eye and Low Vision Centre in China, in to individuals with disabilities or a family the Hong Kong Special Administrative Region, member. Examples include adopting a has a centralized system that purchases bulk sup- better posture to prevent contractures, and plies of high-quality but affordable low-vision training in daily living skills (227). devices. The centre also undertakes quality control 117 World report on disability and distributes low-vision devices to more than 70 ■ Be suitable for the user. Poor selection and non-commercial organizations in all regions (229). fit of assistive devices, or lack of training in Mass production can lower costs if the their use, may cause further problems and device uses universal design principles, and secondary conditions. Devices should be is marketed widely (see Chapter  6 for further selected carefully and fitted properly. Users details). Expanding markets beyond regional or should be engaged in assessment and selec- national boundaries may generate the volume tion to minimize abandonment because of necessary to achieve economies of scale and to a mismatch between need and device. produce assistive devices at competitive prices ■ Include adequate follow-up to ensure safe (230, 231). and efficient use. A study in rural Finland Manufacturing or assembling products on why prescribed hearing aids remain locally, using local materials, can reduce cost unused found that follow-up care, including and ensure that devices are suitable for the con- counselling, resulted in increased and more text. Locally-made products may be complex consistent use of the devices. Availability items such as wheelchairs, or simpler items such and affordability of local maintenance is also as seating. Other production options include important. Access to batteries affects ongo- importing the components and assembling the ing hearing-aid use, for instance. Improved final product locally. Some governments offer hearing-aid battery technologies are needed low-interest loans to enterprises producing aids for resource-poor settings. A project in for people with disabilities, while others – Viet Botswana discovered that rechargeable bat- Nam, for example – offer tax exemptions and teries using solar power offered a promising other subsidies to such manufacturers (232). option (240). Reducing duty and import taxes can help where countries need to import assistive Telerehabilitation devices – for instance, because the local market is too small to sustain local production. Viet The use of information, communication, and Nam does not impose import taxes on assis- related technologies for rehabilitation is an tive devices for persons with disabilities (232), emerging resource that can enhance the capac- and Nepal has reduced duties for institutions ity and accessibility of rehabilitation measures importing assistive devices (233). by providing interventions remotely (241–243). Even where free or subsidized schemes Telerehabilitation technologies include: for provision of assistive devices are available, ■ video and teleconferencing technologies in unless professionals and people with disabili- accessible formats; ties are aware of their existence, they will not ■ mobile phones; benefit from them, so information sharing and ■ remote data-collection equipment and telem- awareness is vital (112, 234). onitoring – for example, cardiac monitors. To ensure that assistive devices are appro- priate, suitable and of high quality (89, 235– Technology may be used by people with 237), the devices need to: disabilities, rehabilitation workers, peers, ■ Suit the environment. A large number of trainers, supervisors, and community work- wheelchairs in low-income and middle- ers and families. income countries, donated by the interna- Where the Internet is available, e-health tional community without related services, (telehealth or telemedicine) and telereha- are rejected because they are not appropri- bilitation techniques have enabled people in ate for the user in their environment (238, remote areas to receive expert treatment from 239). 118 Chapter 4 Rehabilitation specialists located elsewhere. Examples of teler- Lack of reliable research hinders the ehabilitation include: development and implementation of effective ■ telepsychiatry services (244), cardiac reha- rehabilitation policies and programmes. More bilitation (245–247), speech and language research on rehabilitation in different contexts therapy (248, 249), and cognitive reha- is needed, particularly on (261, 262): bilitation for people with traumatic brain ■ the link between rehabilitation needs, injury (250, 251); receipt of services, health outcomes (func- ■ remote assessments to provide home modi- tioning and quality of life), and costs; fication services to underserved elderly ■ access barriers and facilitators for reha- people (252); bilitation, models of service provision, ■ training and support of health-care per- approaches to human resource develop- sonnel (210); ment, financing modalities, among others; ■ computerized guidelines to help clinicians ■ cost–effectiveness and sustainability of use appropriate interventions (253); rehabilitation measures, including com- ■ consultation between tertiary hospital and munity-based rehabilitation programmes. community hospitals for problems related to prosthetics, orthotics, and wheelchair Obstacles to strengthening research capac- prescription (254); ity include insufficient rehabilitation research- ■ sharing professional expertise between ers, inadequate infrastructure to train and countries, as well as at critical times such mentor researchers, and the absence of partner- as in the aftermath of a disaster (181). ships between relevant disciplines and organi- zations representing persons with disabilities. Growing evidence on the efficacy and Research on rehabilitation has several effectiveness of telerehabilitation shows that characteristics that differ fundamentally from telerehabilitation leads to similar or better biomedical research, and which can make the clinical outcomes when compared to conven- research difficult: tional interventions (255). Further information 1. There is no common taxonomy of rehabili- on resource allocation and costs is needed to tation measures (12, 257). support policy and practice (255). 2. Rehabilitation outcomes can be diffi- cult to characterize and study (257) given the breadth and complexity of measures. Expanding research and Rehabilitation often employs several meas- evidence-based practice ures simultaneously, and involves workers from different disciplines. This can often Some aspects of rehabilitation have benefited make it difficult to measure changes resulting from significant research, but others have from interventions, such as the specific out- received little attention. Validated research comes from therapy compared to an assistive on specific rehabilitation interventions and device where the two are used concurrently. programmes for people with disabilities – 3. Few valid outcome measures for activity limi- including medical, therapeutic, assistive, and tations and participation restrictions can be community-based rehabilitation – is limited reliably scored by different health profession- (256–258). Rehabilitation lacks randomized als within a multidisciplinary team (263, 264). controlled trials – widely recognized as the 4. Sample sizes are often too small. The range most rigorous method of testing interventions of disabilities is extremely large, and condi- efficacy (259, 260). tions diverse. Rehabilitation measures are 119 World report on disability highly individualized and based on health on the Internet. Most of these databases condition, impairments, and contextual fac- have already evaluated the research for tors, and often the numbers of people within quality, provided ratings of research stud- homogeneous groups that can be included ies, and summarized the evidence. in research studies are small. This may pre- clude the use of controlled trials (37). Evidence-based practice attempts to 5. The need to allow for participation of apply the most recent, appropriate, and effec- people with disabilities – in decision-mak- tive rehabilitation interventions drawn from ing through the process of rehabilitation research (259). Barriers to the development of – requires research designs and methods guidelines and to the integration of evidence that may not be considered rigorous under into practice include: lack of professional time current grading systems. and skills, limited access to evidence (includ- 6. Research-controlled trials, which require ing language barriers), difficulty in arriving at blinding and placebo controls, may not be a consensus, and adapting existing guidelines feasible or ethical if services are denied for to local contexts. These issues are particularly control groups (260, 265). relevant to developing countries (195, 268). A study from Botswana, for example, highlights Information and good the lack of policy implementation and use of practice guidelines research findings (269). Where evidence is lacking, the expertise Information to guide good practice is essential of clinicians and consumers could be used to for building capacity, strengthening rehabilita- develop consensus-based practice guidance. tion systems, and producing cost-effective ser- For instance, a “consensus conference” laid the vices and better outcomes. foundation for WHO guidelines on the provi- Good rehabilitation practice uses research sion of manual wheelchairs in less-resourced evidence. It is derived not from single studies, settings. The guidelines were developed in but from an interpretation of one or more stud- partnership with the International Society for ies, or systematic reviews of studies (265–267), Prosthetics and Orthotics and the US Agency and provides the best available research on for International Development (270). techniques, effectiveness, cost–benefits, and New Zealand’s pioneering Autistic consumer perspectives. Rehabilitation profes- Spectrum Disorder Guidelines, developed in sionals can obtain information on good prac- response to gaps in service, provide a good tices through: example of the evidence-based approach. The ■ Guidelines that apply research knowledge, guidelines cover identification and diagnosis of usually on a specific health condition, to conditions, and discuss access to interventions actual practice for clinicians. and services (271). A wide range of stakehold- ■ An independent search for specific ers were involved in developing the guidelines, interventions. including people with autism, parents of chil- ■ Continuing professional education. dren with autism, medical, educational, and ■ Clinical guidance notes on good practice community providers, and researchers from from employers and health organizations. New Zealand and elsewhere, with particu- ■ Discipline-specific Internet databases that lar attention to the perspectives and experi- appraise the research for clinicians. A wide ences of Māori and Pacific people. As a result variety of sources, including general biblio- of these guidelines, proven programmes have graphic databases and databases specializ- been scaled-up, increasing numbers of people ing in rehabilitation research, are available trained in assessment and diagnosis of autism, 120 Chapter 4 Rehabilitation and increasing numbers of people enquiring ■ Use a range of methodologies. More about and receiving information on the condi- research such as that by the Cochrane tion. A range of programmes to help support Collaboration (Rehabilitation and Related families of people with disabilities have also Therapies) (208) is needed when feasible. been started (272). Guidelines developed for Alternative, rigorous research method- one setting may need adaptation for implemen- ologies are indicated, including qualitative tation in another setting. research, prospective observational cohort design (259), or high-quality, quasi-experi- Research, data, and information mental designs that suit the research ques- tions (265), including research studies on Better data are needed on service provision, CBR (173). service outcomes, and the economic benefits ■ Systematically disseminate results so that: of rehabilitation (273). Evidence for the effec- policy across government reflects research tiveness of interventions and programmes is findings, clinical practice can be evidence- extremely beneficial to: based, and people with disabilities and ■ guide policy-makers in developing appro- their families can influence the use of priate services research (269). ■ allow rehabilitation workers to employ ■ Enhance the clinical and research environ- appropriate interventions ment. Providing international learning and ■ support people with disabilities in research opportunities will often involve decision-making. linking universities in developing countries with those in high-income and middle- Long-term longitudinal studies are needed income countries (68). Countries in a par- to ascertain if expenditure for health and ticular region, such as South-East Asia, can health-related services decreases if rehabilita- also collaborate on research projects (275). tion services are provided. Research is also needed on the effect rehabilitation has on fami- lies and communities, for example, the benefits Conclusion and accrued when caregivers return to paid work, recommendations when support services or ongoing long-term care costs are reduced, and when persons with The priority is to ensure access to appropriate, disabilities and their families feel less isolated. timely, affordable, and high-quality rehabilita- A broad approach is required as benefits of tion interventions, consistent with the CRPD, rehabilitation often accrue to a different gov- for all those who need them. ernment budget line from that funding reha- In middle-income and high-income coun- bilitation (207). tries with established rehabilitation services, Relevant strategies for addressing barriers the focus should be on improving efficiency and in research include the following: effectiveness, by expanding the coverage and ■ Involve end-users in planning and research, improving the relevance, quality, and afford- including people with disabilities and reha- ability of services. bilitation workers, to increase the probabil- In lower-income countries the focus should ity that the research will be useful (269, 274). be on introducing and gradually expanding ■ Use the ICF framework to help develop a rehabilitation services, prioritizing cost-effec- global common language and assist with tive approaches. global comparisons (12, 17). 121 World report on disability A broad range of stakeholders have roles to services. Depending on each country’s specific play: circumstances, these could include a mix of: ■ Governments should develop, implement, ■ Public funding targeted at persons with and monitor policies, regulatory mecha- disabilities, with priority given to essential nisms, and standards for rehabilitation elements of rehabilitation including assis- services, as well as promoting equal access tive devices and people with disability who to those services. cannot afford to pay. ■ Service providers should provide the high- ■ Promoting equitable access to rehabilita- est quality of rehabilitation services. tion through health insurance. ■ Other stakeholders (users, professional ■ Expanding social insurance coverage. organizations etc.) should increase aware- ■ Public-private partnership for service ness, participate in policy development, provision. and monitor implementation. ■ Reallocation and redistribution of existing ■ International cooperation can help share resources. good and promising practices and provide ■ Support through international cooperation technical assistance to countries that are including in humanitarian crises. introducing and expanding rehabilitation services. Human resources Policies and regulatory mechanisms Increase the numbers and capacity of human resources for rehabilitation. Relevant strategies ■ Assess existing policies, systems, services, include: and regulatory mechanisms, identifying ■ Where specialist rehabilitation personnel gaps and priorities to improve provision. are in short supply, develop standards in ■ Develop or revise national rehabilitation training for different types and levels of plans, in accord with situation analysis, to rehabilitation personnel that can enable maximize functioning within the popula- career development and continuing educa- tion in a financially sustainable manner. tion across levels. ■ Where policies exist, make the necessary ■ Establish strategies to build training changes to ensure consistency with the capacity in accord with national rehabili- CRPD. tation plans. ■ Where policies do not exist, develop poli- ■ Identify incentives and mechanisms for cies, legislation and regulatory mechanisms retaining personnel especially in rural coherent with the country context and with and remote areas. the CRPD. Prioritize setting of minimum ■ Train non-specialist health professionals standards and monitoring. (doctors, nurses, primary care workers) on disability and rehabilitation relevant to Financing their roles and responsibilities. Develop funding mechanisms to increase cov- Service delivery erage and access to affordable rehabilitation Where there are none, or only limited, services introduce minimum services within existing 122 Chapter 4 Rehabilitation health and social service provision. Relevant Technology strategies include: ■ Developing basic rehabilitation services Increase access to assistive technology that is within the existing health infrastructure. appropriate, sustainable, affordable, and acces- ■ Strengthening rehabilitation service sible. Relevant strategies include: provision through community-based ■ Establishing service provision for assistive rehabilitation. devices. ■ Prioritizing early identification and inter- ■ Training users and following up. vention strategies using community work- ■ Promoting local production. ers and health personnel. ■ Reducing duty and import tax. ■ Improving economies of scale based on Where services exist, expand service cov- established need. erage and improve service quality. Relevant strategies include: To further enhance capacity, accessibility ■ Developing models of service provision and coordination of rehabilitation measures the that encourage multidisciplinary and cli- use of information and communication tech- ent-centred approaches. nologies - telerehabilitation - can be explored. ■ Ensuring availability of high quality ser- vices in the community. 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Journal of Rehabilitation Medicine: official journal of the UEMS European Board of Physical and Rehabilitation Medicine, 2002,34:1-4. doi:10.1080/165019702317242631 PMID:11900256 Chapter 5 “I don’t know what to do for my mum. She is my earthly god. My family has been so supportive and helpful. They carry or feed me when I cannot. They have paid my bills. They have cared and loved me…I don’t think [I will have children] unless when God does a miracle. I am very expensive to maintain, so how can I maintain my family?” Irene “In my town the programs work and the different social services talk to each other. The workers helped me get an apartment and gave me money for food when I didn’t have anything to eat. I would have been kicked out of my apartment maybe two times if the worker didn’t talk to my landlord because we were butting heads. I don’t know if I would have made it without them. Those people really care about me and are committed to me. They are like my family and respect me. With the right support like that, people can grow into the right things and that needs to be thought of more. We don’t need to be taken care of but to have someone to talk to and help us learn to solve our own problems.” Corey “A revolution in life – and in my head! Personal Assistance [PA] means emancipation. PA means I am able to get up in the morning and to bed at night, that I can take care of my personal hygiene etc. but PA also means freedom to participate in society. I even have got a job! Now I can decide for myself how, when and by whom I shall be assisted. I get the housework and the gardening done, in addition to my personal things, and there are still hours left for recreational activities. I can also save hours, which makes it possible for me to go away on holiday.” Ellen “At age 16 I was afraid to be ‘weird’. As I saw no way out I conducted some suicide attempts. This led to an involuntary admission in a mental hospital with long-term seclusion, coercive medication, fixation, even body cavity searches to prevent me from self-harm or suicide. Caregivers confined me for months and months. As a result, I felt unwelcome and useless. Their treatment was not helping me at all. I got more depressed and suicidal, and refused to cooperate. I have been raised with a strong feeling of justice, and I believed this was not good care. There was no trust between the caregivers and me, only a fierce struggle. I felt like I was on a dead end and I saw no way out. I did not care for my life anymore and expected to die.” Jolijn 5 Assistance and support For many people with disabilities, assistance and support are prerequisites for participating in society. The lack of necessary support services can make people with disabilities overly dependent on family members – and can pre- vent both the person with disability and the family members from becom- ing economically active and socially included. Throughout the world people with disabilities have significant unmet needs for support. Support services are not yet a core component of disability policies in many countries, and there are gaps in services everywhere. No one model of support services will work in all contexts and meet all needs. A diversity of providers and models is required. But the overarch- ing principle promoted by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (1) is that services should be provided in the community, not in segregated settings. Person-centred services are pref- erable, so that individuals are involved in decisions about the support they receive and have maximum control over their lives. Many persons with disabilities need assistance and support to achieve a good quality of life and to be able to participate in social and economic life on an equal basis with others (2). A sign language interpreter, for instance, enables a Deaf person to work in a mainstream professional environment. A personal assistant helps a wheelchair user travel to meetings or work. An advocate supports a person with intellectual impairment to handle money or make choices (2). People with multiple impairments or older persons may require support to remain in their homes. These individuals are thus empowered to live in the community and participate in work and other activities, rather than be marginalized or left fully dependent on family sup- port or social protection (3, 4). Most assistance and support comes from family members or social networks. State supply of formal services is generally underdeveloped, not- for-profit organizations have limited coverage, and private markets rarely offer enough affordable support to meet the needs of people with disabilities (5–7). State funding of responsive formal support services is an important element of policies to enable the full participation of persons with disabili- ties in social and economic life. States also have an important role in setting standards, regulating, and providing services (8). Also by reducing the need for informal assistance, these services can enable family members to partici- pate in paid or income-generating activity. 137 World report on disability Box 5.1. Personal ombudsmen for supported decision-making in Sweden Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) ensures that people cannot lose legal capacity simply because of disability. People may require support to exercise that capacity, and safeguards will be needed to prevent the abuse of such support. The CRPD obliges governments to take appropriate and effective measures so that people have the support they need to exercise their legal capacity. Supported decision-making can take many forms. It involves people with disabilities having supporters, or advocates, who know them, can understand and interpret their choices and desires, and can communicate these choices and desires to others. Forms of supported decision-making may include support networks, personal “ombudspeople”, community services, peer support, personal assistants and good advanced planning (9). Satisfying these requirements is not always straightforward. People in institutions may be denied this support. There may be no relevant agencies. An individual may not be able to identify a trusted person. Also consider- able effort and financial investment may be needed. However existing models of substitute decision-making or guardianship are also costly and complicated. Supported decision-making should thus be seen as a redistribution of existing resources, not as an additional expense (10). Examples of decision-making support models can be found in Canada and Sweden. The Personal Ombud (PO) programme in Skåne, the southernmost province of Sweden, supports people with psychosocial disabilities, helping them assert their legal rights and make major decisions about their lives (11). PO-Skåne employs individuals with a professional degree – such as law or social work – who have the ability and interest to interact well with people with psychosocial disabilities. They do not work from an office but go out to meet the people they work with, wherever they are based. Only a verbal agreement is required to set up the service, which is confidential. This allows a relationship of trust to be established, even with individuals who have had experience of abuse by authorities claiming to help. Once the PO relationship has been set up by agreement, the PO can act only on specific requests – for instance, to help the person obtain government benefits. Often, the greatest need is to talk about life. The PO may also be asked to help resolve long-standing problems, such as creating a better relationship with the family. The PO programme has helped many people to manage their lives. The initial costs can be high, as people assert their rights and make full use of the services. But the costs fall as situations are resolved and the need for support declines. Sources (12–14). The CRPD sees support and assistance not information through sign language and other as ends in themselves but as means to preserv- forms of communication. ing dignity and enabling individual autonomy Evidence on the demand for and supply of and social inclusion. Equal rights and partici- support services and assistance is scarce, even pation are thus to be achieved, in part, through in developed countries. This chapter presents the provision of support services for people evidence on the need and unmet need for sup- with disabilities and their families. Article 12 port services, the barriers to formal provision, restores the capacity of decision-making to and what works in overcoming these barriers. people with disabilities. Respecting individual wishes and preferences – whether through supported decision-making or otherwise—is a Understanding assistance legal imperative (see Box 5.1). Articles 19 and and support 28 are concerned with “the right to live inde- pendently and be included in the community” This chapter uses the phrase “assistance and with an “adequate standard of living and social support ” to cover a range of interventions protection”. Article 21 upholds rights to free- labelled elsewhere as “informal care”, “support dom of expression and opinion and access to services”, or “personal assistance”, but as part 138 Chapter 5 Assistance and Support of a broad category which also includes advo- including older persons. When individuals cacy, communication support, and other non- with disabilities can independently get to a therapeutic interventions. bathroom, for instance, they may not require Some of the more common types of assis- another person to help them. When they have a tance and support services include: suitable wheelchair, they may be able to negoti- ■ community support and independent ate their local environment without assistance. living – assistance with self-care, house- And if mainstream services are accessible, there hold care, mobility, leisure, and commu- will be less requirement for specialized support. nity participation; The need for assistance and support ■ residential support services – independ- changes through stages of the lifecycle. Formal ent housing and congregate living in group support may include: homes and institutional settings; ■ in childhood – respite care, special needs ■ respite services – short-term breaks for assistance in education; caregivers and people with disabilities; ■ in adulthood – advocacy services, residen- ■ support in education or employment – such tial support, or personal assistance in the as a classroom assistant for a child with a dis- workplace; ability, or personal support in the workplace; ■ in old age – day centres, home-help ser- ■ communication support – such as sign- vices, assisted living arrangements, nurs- language interpreters; ing homes, and palliative care. ■ community access – including day care centres; Often, problems in service provision occur ■ information and advice services – includ- between these stages – such as between child- ing professional, peer support, advocacy, hood and adulthood (15). and supported decision-making; ■ assistance animals – such as dogs trained Needs and unmet needs to guide people with a visual impairment. Data are sparse on the needs for national formal This chapter deals mainly with assistance support services. Chapter 2 discussed evidence and support in the activities of daily life and on support services. Most of the evidence about community participation. Support services in support services and assistance in this chapter education and employment, as well as envi- comes from developed countries. This does not ronmental adaptations, are discussed else- imply that formal assistance and support are not where in the report. equally relevant in low-income settings; it sug- gests instead that they are rarely provided for- When are assistance and mally or that data about them are not collected. support required? Population surveys in Australia, Canada, New Zealand, and the United States of America The need for assistance and support can fluctu- have shown that between 60% and 80% of people ate, depending on environmental factors, the with disabilities generally have their needs met stage of life, the underlying health conditions, for assistance with everyday activities (16–19). and the level of individual functioning. Most of the support in these countries is from Key factors determining the need for sup- informal sources, such as families and friends. port services are the availability of appropriate For example, a survey of 1505 non-elderly adults assistive devices, the presence and willingness in the United States with disability found that: of family members to provide assistance, and ■ 70% relied on family and friends for assis- the degree to which the environment facili- tance with daily activities, and only 8% used tates participation of people with disabilities, home-health aides and personal assistants; 139 World report on disability ■ 42% reported having failed to move in or reported a need for respite care in the prior out of a bed or a chair because no one was 12 months, especially among younger chil- available to help; dren, mothers with low education, low- ■ 16% of home-care users reported problems income households, and minority race or paying for home care in the previous 12 ethnicity (29). months; ■ 45% of participants in the study worried Social and demographic factors that caring for them would become too affecting demand and supply much of a burden on the family; ■ 23% feared having to go into a nursing Population growth affects the supply of care. home or other type of facility (20). Growth in older age cohorts and their rates of disability influence both supply and demand, For most countries, including developed and changes in family structure impact on the ones (21), and for many disability groups, there availability and willingness to provide care. are large gaps in meeting needs for support: ■ The ageing of consumers and ageing of ■ Community support and independent family members who provide support point living. In China there is a shortage of com- to a greatly increased demand for support munity support services for people with services. The number of people aged 60 disabilities who need personal care and years or over worldwide has roughly tripled lack family support (6, 22). In New Zealand – from 205 million in 1950 to 606 million a household disability survey of 14 500 in 2000 – and is projected to triple again children with physical disabilities reported by 2050 (30). The likelihood of acquiring that 10% of families reported unmet need a health condition increases as people age for household care, and 7% for funding for – something relevant to prospective users respite care (23). of support services and to family members ■ Communication support. Deaf people who provide support. frequently have difficulties in recruiting ■ Despite high proportions of young people and training interpreters, particularly in in many countries – for example in Kenya rural or isolated communities (24, 25) (see 50% of the population is under 15 years Box 5.2). A survey on the human rights sit- of age (31) – there has been a decrease in uation of Deaf people found that 62 of the the number of children per family (32). 93 countries that responded have sign lan- Over 1980–2001 fertility rates declined in guage interpreting services, 43 have some developed countries (from 1.5 to 1.2) and in kind of sign language interpreters training, developing countries (from 3.6 to 2.6). Even and 30 countries had 20 or fewer qualified though infant and child mortality rates sign language interpreters, including Iraq, have been steadily falling in most coun- Madagascar, Mexico, Sudan, Thailand, and tries, the counteracting impact of falling the United Republic of Tanzania (27). fertility rates is greater, with the net effect ■ Respite services. In the United Kingdom that smaller family sizes are projected (33), a large study of family caregivers of adults indicating less family care. with intellectual disability found that 33% ■ In most countries there has been an had a high but unmet need for respite ser- increase in geographical mobility. With vices and 30% a high but unmet need for young people moving more readily from home-based services (28). A 2001 United rural areas to urban centres or abroad, States cross-sectional survey of children and with changing attitudes, shared living with special health care needs found that arrangements within families are becom- of the 38 831 respondents, 3178 (8.8%) ing less common (33). 140 Chapter 5 Assistance and Support Box 5.2. Signs of progress with community-based rehabilitation The Ugandan government piloted a community-based rehabilitation (CBR) programme in Tororo district of Eastern Uganda in the 1990s, with support from partners, notably the Norwegian Association of the Disabled. During the initial phases Deaf people realized that they were missing out on rehabilitation services. They responded through their national umbrella organization – Uganda National Association of the Deaf (UNAD) – alerting the CBR managers and other development partners to the fact that Deaf people were being excluded because the CBR workers could not use sign language, and so could not communicate with them, and therefore could not help them to access services, information, and support. Uganda Sign Language (USL), developed informally by UNAD in the 1970s, came to be formally recognized and approved by the Ugandan government in 1995. UNAD devised a pilot project for teaching CBR workers sign language in Tororo in 2003. The main objective was to enable Deaf people’s inclusion and participation in com- munities and realize their full physical and mental potential. Twelve Deaf volunteers run USL training for the CBR workers, the Deaf people and their families. So far, more than 45 CBR workers have been taught sign language: although only about 10 are fluent, the rest have a basic USL, which allows them to greet Deaf people and to provide the key information about education and employment and health among other things. Although the project has been largely successful, some major problems encountered include the high expectations from target groups, the inadequate funds to expand to a wider area, the persistence of negative attitudes, and the high illiteracy and poverty among Deaf people and their families. These obstacles have been tackled through sensitization and awareness campaigns, intensive fundraising activities, and collaboration with the government to mainstream Deaf people’s issues in their programmes and budgets. The story of Okongo Joseph, a Deaf beneficiary, gives an idea of how such an initiative can change lives, by ena- bling the CBR programmes to offer services that include the Deaf community. Okongo lives in a remote location, was born deaf, and never went to school, but has now learned sign language from UNAD volunteers who visited him at his home. Okongo writes: “I would like to send my sincere vote of thanks to UNAD for the development you have brought to me as a Deaf person and to my family members at large. I have achieved a lot since this programme started. I really thank UNAD for the sign language programme they have taught me, my family and my new friends who work in CBR. I am now not a primitive person like before. The goat I was given is in good condition. I request for more from you. I wish you good luck.” Source (26). It is uncertain whether informal care and support can have adverse consequences for existing provisions for supporting older people caregivers. with a disability will cope with these demo- ■ Stress. The demands of caring often result in graphic shifts (34). Modelling from Australia stress for families, particularly for women, suggests that fears about future lack of caregiv- who tend to be responsible for domestic ers may be misplaced (35). labour, with care for family members with disability representing a significant share Consequences for caregivers (36). In older age, men may also care for of unmet need for formal spouses (37). Factors contributing to stress – and possibly affecting the caregiver’s personal support services health – include increased time spent on care for the person with a disability, increased Informal care can be an efficient and cost- housework, disruptions to sleep, and the effective way of supporting people with dis- emotional impact of care (38). Caregivers abilities. But exclusive reliance on informal also report isolation and loneliness (39). 141 World report on disability ■ Fewer opportunities for employment. suggests that parents may eventually be Where employment would otherwise be an unable to continue providing care for their option, caring for a family member with a disabled family member. This is often a disability is likely to result in lost economic hidden unmet need, as families may not opportunities, as caregivers either reduce have sought formal support when the disa- their paid work or refrain from seeking it bled individual was younger, and may find (40). An analysis of the General Household it hard to seek help later in life. The needs Survey in the United Kingdom found that of such families have not been adequately informal care reduced the probability addressed in most countries (48), including of working by 13% for men and 27% for such high-income countries as Australia women (41). In the United States members (49) and the United States (50). of families of children with developmental disabilities work fewer hours than members Policy responses to the support needs of infor- in other families, are more likely to have mal caregivers can sometimes compete with the left their employment, have more severe demands of people with disabilities for support financial problems, and are less likely to for independent living and participation (51). The take on a new job (42, 43). needs and rights of the informal caregiver should ■ Excessive demands on children. When be separated from the needs and rights of the disa- adults acquire a disability, children are often bled person. A balance must be found, so that each asked to help (44). Male children may be person has independence, dignity, and quality of expected to enter the workforce to compen- life. Caring, despite its demands, has many positive sate for a parent who is no longer working. aspects that need to be brought out (52). People with Female children may be expected to con- disabilities who do not have families able to provide tribute to domestic tasks or to help support the necessary support and assistance should be a the parent with a disability. These increased priority in formal support services. demands on children may impair their education, and their health (45). In Bosnia Provision of assistance and support and Herzegovina children aged 11–15 years whose parents were experiencing health Assistance and support are complex, because problems or a disability were 14% more they are provided by different suppliers, funded likely than other children in that age group in different ways, and delivered in different to drop out of school (46). There are many locations. In supply, the main divide is between examples, mainly from Africa, of children informal care, provided by families and friends, having to drop out of school because of a and formal services, provided by government, parent developing AIDS. In Uganda, among non-profit organizations, and the for-profit children aged 15–19 years whose parents sector. The cost of formal support can be met had died of AIDS, only 29% continued their through state funding, raised through general schooling undisrupted, 25% lost school taxation, through social insurance contribu- time, and 45% dropped out of school (47). tions by those covered by the scheme, through ■ Greater difficulties as family members charitable or voluntary sector funding, through age. As parents or other family mem- out-of-pocket payment to private service pro- bers contributing to care grow older and viders, or through a mixture of these methods. become frail or die, it can be difficult for The services can be provided within a family the remaining family to continue provid- setting or single occupancy, or congregate ing care. The increased life expectancy living in group homes or institutional settings. of children with intellectual disabilities, While formal organized support services cerebral palsy, or multiple disabilities and programmes for people with disabilities 142 Chapter 5 Assistance and Support are common in high-income countries, they are and responsiveness. NGOs often provide com- a fairly new concept in many low-income and munity-based and user-driven programmes to middle-income countries. But even in countries promote participation by people with disabili- with well-developed systems of support, infor- ties in their communities (58, 59). For example, mal care and support from families and friends in South Africa the Disabled Children’s Action predominates, being indispensable and cost- Group was set up by parents of children with efficient. In all countries family support is essen- disabilities, predominantly from the black and tial (53). Across high-income countries families coloured communities, in 1993. The aim of this meet around 80% of the support needs of older low-cost, mutual support group is to promote people (52). In the United States more than 75% inclusion and equal opportunities, particularly of people with disabilities receive assistance in education. It has 311 support centres, mostly from unpaid informal caregivers (54). Among in poorer areas, with 15  000 parent members adults with developmental disabilities more and 10 000 children and young people actively than 75% live at home with family caregivers, involved. Its work has been supported by grants and more than 25% of these caregivers are 60 from international NGOs as well as national years or older, with another 35% aged between charities (60). 41 and 59 years. Fewer than 11% of people with NGOs can partner with governments to developmental disabilities were living in super- deliver services for people with disabilities (61). vised residential settings in 2006 (55). They also frequently act as vehicles for testing Limited data are available on the eco- new types of service provision and for evalu- nomic value of informal care, overwhelmingly ating the outcomes. But many are small, with performed by women. In 2005–2006 the esti- limited reach, so their good practices cannot mated value of all unpaid care in Australia was always be disseminated and replicated more A$  41.4 billion, the major part of all “welfare widely. Disadvantages may arise because of services resources”, which amounted to around their fragile financial base and because they A$  72.6 billion (56). A Canadian study found may have different priorities to government. that private expenditure, largely related to time Private for-profit suppliers of residential costs for provision of assistance, accounted for and community support services exist in most 85% of total home-care costs, which escalated societies, and their services are either con- as activity limitations increased (57). tracted by government, or paid directly by the Government-led service delivery was client. They are often concentrated in particu- traditionally focused on institutional care. lar areas of the care market, such as care for Governments have also provided day services the elderly and home care. Where people with such as home care and day centres for people disabilities can afford to do so, they or their living in the community. With the recent trend families may employ people to support them in towards “contracting out” services, govern- activities of daily living. ments, particularly local ones, are shifting from In practice, people with disabilities receive being direct service providers to commission- a range of services from different providers. ing, retaining funding and regulatory functions For example in Australia the Commonwealth– such as assessment procedures, standard set- State/Territory Disability Agreement sets the ting, contracting, monitoring, and evaluation. national framework to fund, monitor, and Nongovernmental organizations – also support services for 200 000 people with a dis- known as private not-for-profit, voluntary, or ability. Community access and respite services civil society organizations – have often appeared had a high proportion of people using nongov- where governments have failed to provide for ernment services. Employment services for specific needs. Their advantages can include people with disabilities were accessed almost their potential for innovation, specialization, exclusively through NGOs. Support services in 143 World report on disability the community were accessed mainly through low-income countries governments cannot government agencies (56). provide adequate services and commercial ser- vice providers are either not available or not affordable for most households (65). Barriers to assistance Governments often do not support the vol- and support untary sector to develop innovative services able to meet the needs of families and individuals with disabilities. In Beijing, China, in addition Lack of funding to existing government welfare institutions, a small number of nongovernmental housing Social safety net programmes in developing support agencies have been set up for children countries typically amount to between 1% and and young people with a disability. A study 2% of gross domestic product, and to about twice of four of them showed that the main service that in developed countries, although rates are was skills training (6). The government does variable (62). Upper middle-income and high- not support these organizations financially, income countries often provide a combination though the local government subsidizes the fee of cash programmes and a variety of social for a small number of the most disadvantaged welfare services. In contrast, in many develop- children or orphans (66). Instead, the services ing countries, a significant share of safety net rely on fees paid by families and donations, resources is often allocated to cash programmes including international assistance. As a result, targeted at the poor and vulnerable households, the services are likely to be less affordable to with only a fraction going to the provision of users and their quality and staffing arrange- social welfare services to vulnerable groups, ments will probably suffer (67). In India NGOs including individuals with disabilities or their and independent living organizations are often families. In low-income settings, social welfare successful in innovating and creating empow- services are often the only safety net, but the ering services, but they can rarely scale them up spending is low and programmes are frag- to wider coverage (5). mented and of a very small scale, reaching only a fraction of the needy population. Lack of adequate human resources The lack of effective financing for support – or its distribution within a country – is a major Personal support workers – also known as direct obstacle to sustainable services. For example, in care workers or home aides – play a vital role in India, in 2005–06, the spending on the welfare community-based service systems, but there is of people with disabilities – which focused on a shortage of such workers in many countries support to national disability institutions, non- (68–70). As the proportion of older people in government organizations providing services a country increases, the demand for personal and spending on assistive devices – represented support workers will grow. In the United States, 0.05% of Ministry of Social Justice and Welfare for example, the demand for personal support allocations (5). workers far exceeds their availability. But their In countries that lack social protection numbers are growing, and it has been estimated schemes, funding assistance and support can that the number of home health aides will be problematic. Even in high-income countries, increase by 56% between 2004 and 2014 and funding long-term care for older people is prov- the number of personal and home care aides ing difficult (21, 63). An Australian study found by 41% (71). A study in the United Kingdom that 61% of caregivers of people with profound estimated that 76 000 individuals were already or severe disabilities lacked any main source of working as personal assistants funded through assistance (64). In many middle-income and direct payments schemes (72). 144 Chapter 5 Assistance and Support Many personal support workers are poorly rights abuses are widely reported (see Box 5.3). paid and have inadequate training (70, 73). A People with disabilities worldwide have been United States study found that 80% of social demanding community-based services that care workers had no formal qualifications or offer greater freedom and participation. They training (74). Many workers may be working in have also promoted supportive relationships social care temporarily, rather than as a career. that allow them to exercise more control over A study in the United Kingdom found that only their lives and to live in the community (85). 42% of personal assistants had qualifications The CRPD promotes policies and institutional in social care (72). Combined with their high frameworks that enable community living and turnover, the result can be substandard care and social inclusion for people with disabilities. a lack of a stable relationship with the service user. Inadequate and Many support workers are economic unresponsive services migrants, lacking skills and a career ladder. They are vulnerable to exploitation, particu- In some countries support services are avail- larly given their precarious immigration status. able only to people living in sheltered housing The high demand for support workers in more projects or institutions and not to those living affluent countries has led to an inflow of people, independently. Institution-based services have largely women, from neighbouring poorer coun- had limited success in promoting independence tries – for instance, from the Plurinational State and social relationships (86). Where commu- of Bolivia to Argentina or from the Philippines nity services do exist, people with disabilities to Singapore. The knock-on effect of this migra- have lacked choice and control over when tion – described as a “global care chain” (75) they receive support in their homes. Disabled – is that in their home countries, other relatives people often see relationships with profession- have to step in to act as caregivers. als, seldom disabled themselves, as unequal and patronizing (87). Such relationships have also Inappropriate policies and led to an unwanted dependency (88). institutional frameworks Some recent reviews reveal that while com- munity living shows significant improvements From the 18th and 19th century onwards, the over institutional living, people with disabili- main framework for formal services was to ties are still far from achieving a lifestyle com- provide support by placing persons with dis- parable to that of people not disabled (2). For abilities in institutions. Until the 1960s people many people with intellectual impairments with intellectual impairments, mental health and mental health conditions, the main com- conditions, and physical and sensory impair- munity service is attendance at a day centre, ments usually lived in segregated residential but a review of a range of studies failed to find institutions in developed countries (76–78). In good evidence of benefits (89). The commu- developing countries institutions along similar nity service often fails to provide an entry to lines were sometimes initiated by international employment, produce greater satisfaction (85), NGOs, but the sector remained minimal com- or deliver meaningful adult activities (90). pared with high-income countries (79–81). Although it was once thought humane Poor service coordination to meet the needs of people with disabilities in asylums, colonies, or residential institu- Where services are delivered by different sup- tions, these services have been widely criti- pliers – at local or national level, or from health, cized (82, 83). Lack of autonomy, segregation education, and housing, or from state, volun- from the wider community, and even human tary, and private suppliers – coordination has 145 World report on disability Box 5.3. Mental health system reform and human rights in Paraguay In 2003 Disability Rights International (DRI) documented life-threatening abuses against people detained in the state-run psychiatric hospital in Paraguay. These included the detention in tiny cells of two boys, aged 17 and 18 years, with diagnoses of autism. The boys had been held there, naked, for the previous four years, without access to toilets. The other 458 people in this institution also lived in atrocious conditions, which included: ■ open sewage, rotting garbage, broken glass, and excrement and urine strewn around wards and common areas; ■ inadequate staffing; ■ a lack of proper medical attention and medical record-keeping; ■ shortages of food and medicines; ■ the detention of children with adults; ■ a lack of adequate mental health services or rehabilitation. DRI, along with the Center for Justice and International Law (CEJIL), filed a petition with the Inter-American Commission on Human Rights of the Organization of American States, requesting urgent intervention on behalf of those held in the institution. In response, the Commission called on the Paraguayan government to take all necessary steps to protect the lives, health, and safety of those detained in the psychiatric hospital. Deinstitutionalization agreement In 2005 DRI and CEJIL signed an historic agreement with the Paraguayan government to initiate mental health reform in the country. The agreement was the first in Latin America to guarantee the rights of people with mental health disabilities to live in the community and receive services and support there. Paraguay also took steps to address the unhygienic conditions and to separate children from adults. A home for eight long-term hospital residents was opened in the community. One of the boys who had been detained naked in his cell returned to live with his family. But the ethos of human rights abuses and the lack of proper treatment in the hospital remained largely unchanged. In July 2008 the Commission found in favour of a new petition that made charges of a series of deaths, numerous cases of sexual abuse, and grievous injuries inside the institution, all in the preceding six months. It called on the government to take immediate action to protect those in the institution and to investigate the deaths and allegations of abuse. Reforms in line with human rights The result: for the first time, a Member State of the Pan American Health Organization (PAHO) formally committed itself to reform its public health system in accordance with regional human rights treaties and the recommenda- tions of regional human rights bodies. The agreement stemmed in part from the technical collaboration of PAHO and WHO with the Paraguayan government on human rights and mental health. Since the 2008 emergency measures, and following its ratification of the CRPD and the optional protocol, the Paraguayan government has taken positive steps towards mental health reform. The hospital’s in-patient popula- tion has been reduced by almost half since 2003, and the government is expanding community-based services and support. Today 28 long-term hospital residents in group homes in the community, and a handful of “chronic patients” live independently, having joined the workforce. Another nine group homes are scheduled to open in the next two years. Source (84). often been inadequate. Existing services and different eligibility criteria make life more support schemes may be operated, in any given difficult for people with disabilities and their place, by a range of public or private provid- families, particularly in the transition between ers. In India different NGOs or agencies serve services for young people and those for adults different impairment groups, but the lack of (91). Lack of knowledge about a disability can coordination between them undermines their be a barrier to referrals for effective support effectiveness (5). Multiple assessments and services and care coordination (15), as can 146 Chapter 5 Assistance and Support a lack of communication between different People who need support services are usu- health and social care agencies. ally more vulnerable than those who do not. People with mental health conditions and intel- Awareness, attitudes, and abuse lectual impairments are sometimes subject to arbitrary detention in long-stay institutions People with disabilities and their families often with no right of appeal, in contravention of the lack information about the services available, CRPD (98, 99). Vulnerability – both in institu- are disempowered, or are unable or unwilling to tions and in community settings – can range express their needs. A Chinese study of caregivers from the risk of isolation, boredom, and lack of of stroke survivors found a need for information stimulation, to the risk of physical and sexual about recovery and stroke prevention, and for abuse. Evidence suggests that people with dis- training in moving and handling (92). A study abilities are at higher risk of abuse, for vari- of family care for children with intellectual dis- ous reasons, including dependence on a large abilities in Pakistan revealed stigma in the com- number of caregivers and barriers to commu- munity and lack of knowledge about effective nication (100). Safeguards to protect people in interventions, causing distress for caregivers (93). both formal and informal support services are A Belgian study of family caregivers of people therefore particularly important (101). with dementia found that lack of awareness of services was a major barrier to service use (94). Empowerment through disability rights Addressing the barriers to organizations, community-based rehabilitation assistance and support organizations, self-advocacy groups, or other collective networks can enable individuals with disabilities to identify their needs and lobby for Achieving successful service improvement (95). Most countries that deinstitutionalization have developed support services have strong organizations of persons with disabilities and A catalyst for the move from institutions to their families lobbying governments to reform independent and community living was the policies on service delivery and to increase or adoption in 1993 of the United Nations Standard at least maintain the resources allocated. In Rules on the Equalization of Opportunities the United Kingdom support from a disabled for Persons with Disabilities, which promoted people’s organization is an important influence equal rights and opportunities for people with on people with disabilities signing up for direct disabilities (102). Since these rules were issued, payment schemes (96). there has been a marked shift in many high- As explored in Chapter 1, negative attitudes income countries and countries in transition, are a cross-cutting issue in the lives of people from large residential institutions and nursing with disabilities. Negative attitudes towards homes to smaller settings within the commu- disability may have particular implications for nity, along with the growth of the independ- the quality of assistance and support. Families ent living movement (103–105). Countries such hide or infantilize children with disabilities, as Norway and Sweden have eliminated all and caregivers might abuse or disrespect the institutional placements. Elsewhere – includ- people they work with. ing Australia, Belgium, Germany, Greece, the Negative attitudes and discrimination also Netherlands, and Spain – institutional care undermine the possibility for people with disa- exists alongside alternative community living bilities to make friends, express their sexuality, arrangements (106). and achieve the family life that non-disabled In a major transformation in eastern people take for granted (97). Europe, countries no longer rely predominantly 147 World report on disability on institutions (107). Alternative care services Outcomes of deinstitutionalization have been progressively developed – includ- Improvements in the quality of life and per- ing day care, foster care, and home support for sonal functioning have been found in several people with disabilities (108). Romania closed studies of people who move out of institutions 70% of its institutions for children between into community settings (106, 112). A study in 2001 and 2007, but for adults the process has the United Kingdom of people with intellectual been slower (109). Alongside deinstitutionaliza- impairments 12 years after leaving residential tion, there has also been decentralization from institutions showed that both quality of life and central to local government and an expansion care were better in the community than in hos- and diversification of social services and ser- pitals (113). Small-scale living arrangements vice providers. offer people with intellectual impairments Plans for closing an institution and moving more friends, more access to mainstream facili- residents to community settings should be ties, and more chances to acquire skills – they started early. Adequate resources need to be also result in greater satisfaction (85). Evidence available for the new support infrastructure from a Chinese study shows that residents with before attempts are made to alter the balance intellectual impairments in small residential of care (110). Deinstitutionalization takes time, homes experienced better outcomes at lower especially if individuals are to prepare for their cost than persons living in medium-size group new lives in the community and be involved in homes or institutions (114). decisions about their accommodation and sup- In some countries, deinstitutionalization port services. Some “double funding” of insti- programmes have converted institutions into tutional and community systems will therefore alternative facilities, such as: be needed during the transition, which may ■ vocational training and resource centres; take several years. ■ rehabilitation centres providing specialist The lesson from deinstitutionalization in secondary and tertiary services; various countries is that it requires a range of ■ smaller home units where people with institutional assistance and support services, complex impairments can live semi-inde- including: pendently with some support; ■ health care ■ respite facilities where people with disabili- ■ crisis response systems ties can come for short breaks and training; ■ housing assistance ■ clubs or similar centres for people with ■ income support mental health issues to achieve peer sup- ■ support for social networks of people living port and respite; in the community. ■ emergency sheltered accommodation, not only for people with disabilities but for all who Unless the agencies responsible for these ser- may be vulnerable to abuse or exploitation. vices work together, there is a danger that individuals will not obtain adequate support at Comparison of costs crucial times in their lives (110). People with The mix of evidence on the relative costs and mental health conditions may need support and effectiveness of institutional and community service coordination to reduce vulnerability to services shows that community services, if well homelessness (111). Some countries, including planned and resourced, have better outcomes Denmark and Sweden, have excellent coordi- but may not be cheaper. nation between health care, social service pro- In the United States the cost of public insti- viders, and the housing sector, allowing people tutions for people with intellectual disabilities with disabilities to find living arrangements is considerably higher than that of commu- that suit their needs. nity-based services (115). However a review of 148 Chapter 5 Assistance and Support evidence from 28 European countries found A “pooled” system of revenue generation slightly higher costs for community-based ser- to finance support systems can include vari- vices (110), but the study also found that the ous forms of prepayment, the most common quality of life was generally better for people being through national, regional or local taxa- living outside institutions, particularly those tion, social insurance (through employers), and who made the move from an institutional to private voluntary insurance. Each may require a community setting. If well planned and ade- some financial contributions by people who use quately resourced, community-based services services or by their families (“user charges” or were much more cost-effective than institu- “co-payments”). Mechanisms where people pay tional care. A personal assistance service eval- for all services out of their own resources are uated by the Serbian Center for Independent the least equitable (122). Living found that the scheme was more cost- Many developed countries have support effective than institutional care (116). services covering all those who need them (21). The European review also revealed a link In other countries access to public funding for between cost and quality, with lower cost institu- support services depends on a means test, as tional systems tending to offer lower quality care. in the United Kingdom, where about half of all The conclusion: community systems of inde- spending on social support comes from pri- pendent and supported living – when effectively vate sources (123). Other strategies to contain set up and managed, and when well planned to government spending on support services in prepare services and individuals for the major countries with developed care systems include: change in support arrangements – delivered ■ charges to users better overall outcomes than institutions (110). ■ restrictions on eligibility In the United Kingdom research which ■ case management to limit the use of services found that user-controlled personal assistance ■ budget-limited programmes (63). schemes were cheaper than government-pro- vided home care contributed to the adoption of a In countries in transition that have system of direct payments. But recent evidence is invested widely in residential care, reallocating more cautious (117). Further research is needed resources can help build community support to know whether paid personal assistance, which services. In low-income and middle-income may substitute for informal care, increases costs countries, for example in Yemen, there have to governments more than alternative arrange- been good examples of social funds financing ments (118–121). User-controlled arrangements support services (124). have the potential to promote individual inde- pendence and to improve quality of life, but they Funding services are unlikely to produce major savings. There are many ways to pay providers, with the Creating a framework for main government mechanisms including: commissioning effective ■ retrospective fee-for-service payments; ■ direct budgetary allocations to decentral- support services ized providers; ■ performance-based contracting; Governments may decide to provide a range of ■ consumer-directed services through devo- support services for all those in need – or they lution of budgets to people with disabilities may target people who cannot afford to pay or their families. out of their own resources. Mobilizing finan- cial resources will in both cases involve some Each method has its incentives and limita- pooling of funds. tions, and each therefore has the potential to 149 World report on disability influence how cost-effective and equitable the reviewed by the Department of Social support system is. The success of a support Development (129). system depends on the mix, volume, and deploy- ment of staff and other resource inputs and the Because support and assistance services services they deliver. In turn, these depend on have been provided almost entirely by fami- how funds are made available through the vari- lies, formal support schemes could increase ous commissioning arrangements. Devolved or demand and substitute for informal care (121). direct payments to people with disabilities offer Regulatory mechanisms, including eligibility a relatively new commissioning option (125). criteria and sound and fair assessment proce- ■ In Sweden the Personal Assistance Reform dures, are necessary to ensure the most equi- Act of 1994 ensured that individuals with table and cost-effective use of resources, and to extensive disabilities would be entitled to allow delivery services to grow gradually. cash payments from the national social insurance fund to pay for assistance. The Assessing individual needs weekly number of assistance hours is deter- mined on the basis of need. About 70% of Assessment is vital to meet the needs of people users buy services from local governments, with disabilities. In high-income countries and 15% have organized themselves into assessment is a general process of deciding user cooperatives that provide services. The which categories of people can be granted enti- remainder purchase services from private tlement, followed by evaluating individual need. companies or directly employ assistants It is generally carried out by formal systems for (126). More than 15 000 individuals in disability determination. In New Zealand, for Sweden use state aid to purchase services instance, once eligibility for support services is to meet their care needs (127). established, access depends on (130): ■ In the Netherlands the Persoonsgebonden- ■ A needs assessment. This identifies and budget is a similar direct payment system. ranks the care and support needs of a The most common service purchased is person, without taking into account pos- personal assistance – from an existing sible funding and services; informal care provider or a nonprofes- ■ Service coordination or planning. This sional private service provider. Introduced identifies the most appropriate services and in 2003, when 50 000 people used the new support options to meet the assessed needs, style Persoongebondenbudget, 120 000 within the available funding; people were taking advantage of the scheme ■ Provision of services. This is generally a by 2010, when it was temporarily halted. support package of services for the person The benefits include lower administrative with disability, as well as for the family, costs and greater individualization of ser- where appropriate. vices. Evaluations have found high levels of satisfaction, better quality of life, and Assessment, historically, was based on eligi- greater independence (128). bility according to medical criteria (124). The ■ In South Africa the Social Assistance Act of focus now is more on support needs to improve 2004 established a direct payment known functioning, as reflected in the International as “grant in aid”. Individuals who already Classification of Functioning, Disability and receive old age, disability, or war veterans’ Health (ICF) (131). Colombia, Cuba, Mexico, benefits qualify for this additional money and Nicaragua have recently introduced ICF- if they require full-time care. But the small based disability assessment systems. monthly allowance is insufficient to pay In many countries assessment has been sep- for support. The scheme is currently being arated from the delivery of services, to remove a 150 Chapter 5 Assistance and Support conflict of interests. In the Netherlands, while ■ an assessment system independent assessment agencies feel that this ■ allocation of resources (108). makes the process more transparent and objec- tive, care providers find it less accessible and In establishing regulatory frameworks, in efficient (132). whatever setting, people with disabilities and In the United Kingdom assessment has their families should be included, and service shifted from being service-led (fitting the indi- users should help in evaluating services (133). vidual to the available service) to needs-based Service outcomes can improve when providers (with services appropriate to meet the need), are accountable to consumers (8). and then to a focus on outcome (with personal- ized social care through enhanced choice). Self- Supporting public-private- assessment is an important part of this process. voluntary services It is not always easy for service users to articu- late their needs, so supported decision making A variety of suppliers from different sectors (public, may be indicated (47). private, voluntary) provide support services. In high-income countries, assistance and Regulating providers support services were set up mostly by charities and self-help groups, with later support from The state has an important role in regulating, the state. This approach is still in use: setting standards, inspecting, monitoring, ■ In the past decade NGOs working on disabil- and evaluating. ity have been set up in the Balkan countries. In the United Kingdom the Comprehensive Many are delivering services, often initially in Area Assessment evaluates the success of local pilots, with the support of state funding, such authorities in implementing government policy, as the Serbian Social Innovation Fund (134). managing public resources, and responding to An example is the pilot project for interpreting the needs of their communities. Social care in Novi Pazar, Serbia, run by the Association providers, whether public, private, or vol- of Deaf and Hard of Hearing People. untary, must register with the Care Quality ■ In India the National Trust Act – created Commission and face regular assessment and as the result of a campaign for the rights inspections. Social care providers are judged by of people with disabilities – has produced seven criteria: collaboration among a range of NGOs. ■ improving health and well-being. The Act gives individuals with autism, ■ improving the quality of life cerebral palsy, intellectual impairment, ■ making a positive contribution or multiple impairments, as well as their ■ choice and control families, access to government services ■ freedom from discrimination to enable people with disabilities to live ■ economic well-being as independently as possible within their ■ personal dignity. communities. It also encourages NGOs to collaborate, giving support to families who In countries where NGOs, assisted by need it, and to facilitate the appointment of foreign aid and local philanthropy, have been a legal guardian (135). Mechanisms under the main providers of support services, stable the Act offer training in personal assis- public regulatory frameworks and funding are tance, to support people with a range of needed to sustain and build on the services. disabilities in the community. Regulatory frameworks should cover: ■ quality standards Some countries have gone beyond simply ■ contracting and funding procedures supporting NGO services, by tendering 151 World report on disability services formerly provided by the state to the underpinned by a range of formal systems and private not-for-profit sector. In Ireland, with services, whether public or private. funding from the government, NGOs provide Formal assistance and support must be nearly all services for people with intellectual coordinated with health care, rehabilitation, disabilities (136). The main aims have been to and housing. For example, a range of residen- provide access to specialist and complementary tial support services – independent housing support services – and for the tendering to raise and congregate living in group homes and quality and drive down prices. This model, institutional settings – should be offered along- widely used in high-income countries, is being side other support services, with the type and adopted in transition and middle-income coun- level based on assessed need (142). Research tries. Governments retain the regulatory role of shows that a comprehensive package of hous- licensing suppliers and monitoring standards. ing adaptations and assistive technology for But as countries shift to contracting, the pro- older people would be cost-effective because of cesses for contracting and monitoring should reductions in need for formal care (143). be effective (108), to avoid neglect of clients or Several high-income countries have moved other abuses (137). from providing generic services to a more indi- Where NGOs and disabled people’s vidualized and flexible system of service provi- organizations develop a role as service pro- sion. This calls for a high level of interagency viders in a mixed economy of care, this can coordination to ensure effective and continual lead to tensions with their client base if they delivery of support. have to cut costs to remain competitive, or if In the United States the Illinois Home they become more responsive to their funders Based Support Services Program, a successful than those they work with, or if advocacy direct payment scheme, supports people with roles are neglected in favour of service provi- disabilities and their families to decide which sion (138, 139). services to buy, including respite care, personal Many countries have seen an expansion of assistance, home modifications, recreational private provision in mental health, following a and employment services, therapies, and trans- fall in public provision (140), but a systematic portation. Families that used this service were review in 2003 found that not-for-profit pro- less likely to place family members in institu- viders had better performances in access, qual- tional care (144). Efficiencies resulted because ity, and cost-efficiency than for-profit mental families tended to not spend all the available health inpatient services (141). funds, and home-based care costs were lower Although systems for public-private part- than those of institutionalization (144). nership are well developed in high-income In a similar vein, several countries – includ- countries, the situation is quite different in low- ing Australia, Canada, and several European income and middle-income countries. Support countries – have started to look at individual- services are fairly recent, and there generally is ized models of funding. In this approach, public little support from the state for NGOs and for- funding from different sources is allocated profit organizations. according to an assessment of need. The com- bined personal budget is then placed under the Coordinating flexible control of the individual to buy services, often service provision within certain constraints, ranging from assis- tive devices and therapy to personal assistance People with disabilities have needs for assis- (145–147). Increasing the power of consumers, tance and support that are not neatly packaged this can make services more accountable. In into what a single provider can offer. Informal consumer-directed services the professionals are assistance and support are most effective when available when needed, but are not the dominant 152 Chapter 5 Assistance and Support partner. Appropriate legal frameworks and meeting assistance and support needs, it may infrastructure can help develop personal assis- well also be cost-effective to provide support to tance schemes, not just for people with physical family members and others providing informal impairments but also people with intellectual care, as suggested by the Illinois Home Based impairments and mental health issues. Support Services Program. Consumer organizations also deliver com- ■ Respite services – either in the home or munity-based responses for mental health. outside the home – providing short-term ■ In Zambia the Mental Health Users Network breaks from caring (156). These have been provides a forum for users of mental health developed in high-income countries and services to support each other and exchange countries in transition, but unmet needs ideas and information (148). for respite are reported (157, 158). ■ In the United States MindFreedom has “land- ■ Direct or indirect financial support. ing zones” for communities to provide support Countries in transition, including the and housing to people so that they can avoid Republic of Moldova and Serbia, and parts hospitalization or institutionalization (99). of South America, where pensions have been provided for otherwise unpaid caregivers, and Consumer-directed services are often less developing countries, such as South Africa, costly and just as safe as professional-directed provide some cash benefit for caregivers in services (149–151). Consumer-directed ser- families with people with disabilities (62, 159). vices probably substitute for informal care and ■ Psychosocial support services to improve can thus raise overall government costs (118, family well-being. 119). The choice offered by such quasi-markets ■ Paid sick leave and other support from depends on supply, which may be lacking, espe- employers to facilitate family caring. cially in rural areas (152). Consumer-directed models may not always Families can benefit from opportunities for improve efficiency and quality. Service users may autonomy and support services. Early family find the choice and bureaucracy overwhelming. support programmes within the developmental Full flexibility through direct payments and disabilities system emerged in the 1960s in the personal assistance involves responsibilities as Nordic countries and Australia (160) and in the an employer – with all the associated admin- late 1970s and early 1980s in the United States. istrative duties, such as accounting and com- Families in consumer-directed programmes pleting tax returns, that may be unwelcome to are more satisfied with services, and have fewer individuals. Some of these tasks can be under- unmet needs and fewer out-of-pocket expenses taken by user cooperatives or agencies. for disability services than those in other types In practice, and depending on needs and of programme (161, 162). preferences, people with disabilities may opt for Families may also need training in working varying levels of choice and control. In the United with caregivers, roles, boundary setting, and Kingdom, despite the growth of personal assistance empowering their relative with disability. They schemes, the majority of people with disabilities may also need information about available ser- still do not opt for direct payments (153, 154). So vices. But a Japanese study found that provid- a range of models is needed, and further research ing information was not effective in reducing should determine which models of personal assis- the burden on caregivers, whereas social com- tance are most effective and efficient (118–121). munication did help (163). Support for informal caregivers User involvement Informal care will continue to be important User involvement has become a criterion for for people with disabilities (155). Apart from judging the quality of service delivery. The 153 World report on disability European Quality in Social Services initiative Personal assistance schemes are not lim- includes effective partnerships and participa- ited to those with physical impairments. A tion among the principles governing its qual- range of approaches can benefit people with ity certification – a process complementary intellectual impairments or mental health con- to national quality certification. Users can be ditions, including: involved in service delivery in different ways, ■ Advocates – where the person is supported including (108, 138, 139): one-on-one by a trained and skilled individ- ■ in complaints procedures ual to make and carry through a decision. ■ during evaluation and feedback ■ Circles of support – networks of support- ■ as participants on management boards ers and friends who know the person well ■ as members of advisory groups of people and who can make decisions to which the with disabilities person freely consents. ■ in making decisions for themselves. ■ KeyRing or living support networks – where people with intellectual impair- The concept of the “co-production” of support ments live in the community, but with a services has recently been promoted, bringing “community living worker” available to together the traditional organizations working on provide support and help make connec- behalf of people with disabilities with organiza- tions in the community. tions controlled by people with disabilities (164). ■ User-controlled independent living It recognizes the contribution disabled people can trusts – similar to circles of support, but make, based on their experiences, seeks to put dis- with a legal structure that sets up the abled people in control of service developments necessary framework of decision-making and service delivery, and provides non-disabled around the individual. people with the role of a supportive ally. ■ Service brokerage – where a skilled sup- The advantages of co-produced service porter enables the person to choose ser- organizations are: the focus is on the needs of vices, helping with the assessment process the users, and the combined resources improve and supporting implementation of assis- the possibility of reducing disabling barriers tance packages. An agency can act as the and creating equality and interdependence named employer of support on behalf of an (165). The principles of co-production and individual, if required. user involvement have been put into practice around the world by organizations of people Despite evidence of the benefits of direct with disability and by parents of children with payments, mental health users are underrepre- disabilities, whether in formal service delivery sented in individualized funding arrangements or community-based rehabilitation (166). in Australia, Canada, the United Kingdom, and the United States (167). Mechanisms for independent living Because of the lack of funds, personal Randomized trials in high-income countries assistance is rarely publicly provided in low- have compared personal assistance with usual income and middle-income settings. But some care for children with intellectual impairments, innovative programmes suggest that low-cost adults with physical impairments, and older solutions can be effective and that independent persons without dementia. Personal assistance living principles remain relevant (3). was generally preferred over other services, had ■ In 2003 in Brazil there were 21 centres for benefits for some recipients, and may benefit independent living, with the first in Rio de caregivers (118–121). Janeiro, already been operating for 15 years 154 Chapter 5 Assistance and Support (166). As elsewhere, the independent living where they direct the tasks, rather than have movement brings together people from the social care worker provide the services different impairment groups, and offers (170). A new generation of support workers – services such as peer support, information, including personal assistants, advocates, and training and personal assistance, with staff those supporting people with intellectual dif- who themselves have disabilities. However, ficulties – present a fresh approach to working unlike those in developed countries, cen- with people with disabilities in the community tres for independent living do not tend to and helping them attain their own goals and receive money from the state, but instead aspirations, based on respect for human rights have to raise their own funds, such as rather than the traditional ethos of “care” (171). through employment brokerage services. ■ In the Philippines a national disabled peo- Support for users of assistance ples organization has developed a multi- and support services sectoral programme in partnership with Funding arrangements for personal assistance the Department of Education and the par- schemes must take into account the additional ents association. It supports the training of tasks that users of the schemes may be called on teachers and parents on providing appro- to perform. People receiving direct payments, priate personal assistance, so that children for instance, should be properly supported with severe impairments can attend local so that complexities in the system are not the mainstream schools. It works with more cause of additional stress or isolation. People than 13 000 children in rural areas, offering with disabilities who employ support workers joint training workshops with preschool need to know how to manage staff and fulfil children, parents, and teachers (168). their employer responsibilities. A study in the United Kingdom found that 27% of people with Building capacity of caregivers disabilities employing personal assistants found and service users becoming an employer daunting, and 31% found it difficult to cope with the administration (72). Training for support workers Disabled peoples’ organizations and car- Support workers, regardless of setting and egivers’ organizations help users benefit from service, need professional training (variously consumer-directed services (96). Individualized known as human services, social work, or social funding models are most effective when coupled care) that takes into account the principles of with other support services (117). Support is also the CRPD (169). While many workers lack post- needed to ensure that brokers and fund man- school education (74), further and higher edu- agers are not excessively directive and that the cation programmes in social work and health quality of care is good. Some disabled peoples’ and social care are increasingly available in organizations – such as the Scottish Personal high income countries. The United Kingdom Assistant Employers’ Network – have launched offers a National Vocational Qualification in recruitment and training programmes aimed at health and social care, achieved through dem- personal support workers and their supervisors, onstrating competency at work and possession as well as at their potential employers with dis- of background knowledge. Often, people with abilities and their families (172). In low-income disabilities can complement any formal train- settings, community-based rehabilitation pro- ing with on-the-job instruction. grammes may be able to provide training to How the training is conducted is as impor- people with disabilities and their families to tant as the content. In general, people with dis- manage their support needs and create links abilities prefer the personal assistance model with self-help groups for information and advice. 155 World report on disability Developing community- disabilities and their families, it can bring based rehabilitation and significant support to people with disabilities and caregivers (176). Recently the principles community home-based care of independent living have started to be intro- duced within community-based rehabilita- Community-based rehabilitation tion, which will help CBR services ensure In many low-income and middle-income coun- greater self-determination for people with tries, consumer-led, government-delivered, or disabilities. NGO-delivered community-based rehabilitation (CBR) programmes are becoming a source of Community home-based care assistance and support for many people with dis- Community home-based care is any support abilities and their families. Many focus on infor- given, in their homes, to people who are ill and mation provision, working closely with families, their families (177). The model, developed par- and facilitating disabled peoples’ participation in ticularly to cope with HIV/AIDS, operates in the community (173). They can also counter ten- many African and Asian countries, with care dencies towards overprotection by families. In all of orphans a special concern. A government income settings, it may be useful for CBR workers, community home-based care programme social workers, or community workers to bring might provide food, transport, medication, together families who share similar experiences in respite care, cash allowances, and emotional supporting relatives with disabilities. and physical care. ■ In Lesotho the leaders of nine branches of the national association of parents of disabled Including assistance and support in children found that parents required support disability policies and action plans in how to teach, train and handle their child; information about the rights of people with The inclusion of formal assistance and sup- disabilities and how to work with profession- port services within a national disability als; and information on how to create teach- policy and related action plan can improve ing aids and obtain equipment (174). community participation of persons with dis- ■ RUCODE, an NGO in the state of Tamil abilities, for example: Nadu, India, runs community-based day- ■ Australia’s Disability Discrimination Act care centres for children with intellectual (1992) encourages organizations to create disabilities and cerebral palsy, with the action plans to eliminate discrimination in help of local government and parents. provision of goods, services and facilities Each centre caters to around 10 children, (178). with one teacher and one attendant at each ■ New Zealand’s Disability Strategy (2001) centre and support from RUCODE staff. offers a framework for government to begin The community contributes the venue and removing barriers to the participation of provides lunch for the children. people with disabilities (179). ■ In Nepal CBR programmes are imple- ■ Sweden’s “From Patient to Citizen” national mented in 35 districts by local NGOs, with action plan (2000) has a vision of complete the government providing funding, direc- access and seeks to eliminate discrimina- tion, advice, and monitoring at the national tion at all levels (180). and district levels (175). CBR programmes can also promote local As the CBR model strengthens the qual- action plans in low-income and middle- ity of the relationship between people with income countries (181). 156 Chapter 5 Assistance and Support Conclusion and formal assistance and support services. No recommendations single model of support services will work in all contexts and meet all needs. Person-centred Many persons with disabilities need assistance services are preferable, so that individuals and support to achieve a good quality of life and are involved in decisions about the support to participate in social and economic activities they receive and have maximum control over on an equal basis with others. Across the world their lives. The following measures are recom- most of the assistance and support services mended for countries introducing or develop- are provided informally by family members or ing assistance and support services. social networks. While informal care is invalu- able, it is sometimes unavailable, inadequate Support people to live and or insufficient. Formal provision of assistance participate in the community and support services, by contrast, is insufficient, especially in low-income settings: state supply Provide services in the community, not in resi- of services is generally underdeveloped, not-for- dential institutions or segregated settings. For profit organizations have limited coverage, and countries that have previously relied on insti- private markets rarely offer enough support to tutional living: meet the needs of people with disabilities. The ■ Plan adequately for the transition to a result is significant unmet need for assistance community-based service model, includ- and support services. ing human resources and sufficient fund- A multitude of stakeholders have roles in ing for the transition phase. ensuring that adequate assistance and support ■ Progressively develop and reallocate services are accessible to persons with disabili- resources to build community support ties. Government’s role is to ensure equal access services, including the possible trans- to services including through making policies formation of institutions into alternative and implementing them; regulating service care services such as resource or day care provision including setting standards and centres. enforcing them; funding services for people with disabilities who cannot afford to purchase Foster development of the services; and if needed, organizing the provi- support services infrastructure sion of services. In planning and introducing formal assistance and support services, care- ■ Include the introduction and development ful consideration should be given to avoiding of formal assistance and support services disincentives for informal care. Service users – customized to different economic and and disabled peoples’ organizations and other social environments – in national disabil- NGOs should increase awareness, lobby for the ity action plans to improve participation of introduction of services, participate in policy persons with disabilities. development and monitor implementation of ■ Support the development of a range of policies and service provision. Service provid- providers – state, not-for-profit providers, ers should provide the highest quality of ser- for-profit entities, and individuals – and vices. Through international cooperation, good models to meet, in a cost-effective manner, and promising cost-effective practices should the diverse assistance and support needs of be shared and technical assistance provided to people with disabilities. countries that are introducing assistance and ■ Consider a variety of financing measures support services. including: contracting out services to pri- This chapter has discussed some of the vate providers, offering tax incentives, models of organizing, funding, and delivering and devolving budgets to people with 157 World report on disability disabilities and their families for direct ■ Providing direct or indirect financial support. purchases of services. ■ Providing information about the services ■ In low-income and middle-income coun- available for caregivers and people with tries, support service provision through civil disabilities. society organizations, which can expand the ■ Organizing opportunities for families, who coverage and range of services. CBR pro- share similar experiences in supporting grammes have been effective in delivering relatives with disabilities, to come together services to very poor and underserved areas. and offer mutual information and support. Ensure maximum consumer Community-based rehabilitation workers, choice and control social workers, or community workers can provide these opportunities for families. Useful This is more likely to be achieved by formal ser- family-oriented approaches also include devel- vices when: oping communities of care and social networks. ■ Services are individualized and flexible rather than “one size fits all” agency-based Step up training and and controlled services. capacity building ■ Consumers are involved in decisions on the type of support and direct the care tasks Effective assistance and support services wherever possible rather than being a pas- require training of both care recipients and sive recipient of care. care providers, irrespective of whether the care ■ Providers are accountable to consumers is provided formally or informally. and their relationship is regulated through ■ Formal support workers, regardless of set- a formal service arrangement. ting and service, should be provided with ■ “Supported decision-making” is available relevant professional training, which takes for people who have difficulties making into account the principles of the CRPD and choices independently – for example, preferably involves people with disabilities people with severe intellectual impairment as trainers to sensitize and familiarize ser- or mental health conditions. vice providers with their future clients. ■ Provide training to families on working Support families as assistance with caregivers, defining roles, setting and support providers boundaries, and on how to empower their relative with disability. Separate the needs and rights of informal car- ■ In low-income settings, community-based egivers from the needs and rights of persons rehabilitation programmes can provide with disabilities. A balance must be found so training to people with disabilities and their that each person has independence, dignity, families to manage their support needs and and quality of life. create links with self-help groups for infor- Promote collaboration between families mation and advice. and family organizations, governmental and ■ Persons with disabilities directly employ- nongovernmental organizations, including ing support workers using allocated public disabled peoples’ organizations, to provide funds may need training and assistance in support for families through a range of systems recruitment, management and fulfilling and services including by: their employer responsibilities. ■ Arranging for respite care, which can pro- ■ Training schemes for sign-language inter- vide a short break from care and psychosocial preters and advocacy workers will help counselling to improve family well-being. improve supply of these vital personnel. 158 Chapter 5 Assistance and Support Improve the quality of services ■ Monitor service provision. ■ Keep updated records of users, providers, To ensure that formal assistance and support and services provided. services are of good quality, the following are ■ Ensure coordination across different gov- recommended: ernment agencies and service providers, ■ Develop sound and fair disability assessment possibly through introducing case man- criteria and procedures, focusing on support agement, referral systems, and electronic needs to maintain and improve functioning. record-keeping. 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It is not an uncommon sight in Port-au-Prince to witness my assistant carrying me as we climb several flights of stairs, even at the tax office to pay my dues!” Gerald “After injury I felt that my social life has been affected so much, due to the difficulty of transportation and environment challenges, it is difficult to do the daily activities (visiting friends, going out…etc), as well as go to hospital appointments and rehabilitation. Before the injury I was an active member in the society, I had many friends and used to go out with them to do some activities and sports. But after the injury, it was difficult for me to go out with them, because the environment is not adapted for wheelchair users, either the streets, transportation, shops, restaurants, or other facilities.” Fadi “I am joining a first gathering of a group that discusses professional topics in psychol- ogy. The meeting was very stressful and frustrating for me, since I was not able to follow the group discussion. After the session was over, I called the instructor, told her about my hearing problem, and asked her permission to pass a special microphone between the speakers, a microphone that transmits their voices straight to my hearing-aids. To my surprise the instructor refused my request and said that it was not good for the group because it would ruin the atmosphere of spontaneity.” Adva “The hardest obstacle for my independence has been the attitude of the people. They think that we can’t do many things. Also, the steps and architectural barriers. I had an experience in the Casa de la Cultura with the director. There were many steps and I couldn’t enter so I sent someone to call for help and when the director came, surprised, he said ‘what’s happened, what’s happened, why are you like this’. He thought that I was there to beg for money, and had not thought that I was working.” Feliza “Until I was 19 years old, I had no opportunities to learn sign language, nor had Deaf friends. After I entered a university, I learned sign language(s) and played an active role as a board member of Deaf clubs. Since I completed graduate school, I worked as a bio-sci- entist in a national institute. I mainly communicate with my colleagues by hand-writing, while I use public sign language-interpreting service for some lectures and meetings. My Deaf partner and I have two Deaf children…my personal history gives me the distinct opinion that the sign language and Deaf culture are absolutely imperative for Deaf chil- dren to rise to the challenge.” Akio 6 Enabling environments Environments – physical, social, and attitudinal – can either disable people with impairments or foster their participation and inclusion. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) stipu- lates the importance of interventions to improve access to different domains of the environment including buildings and roads, transportation, infor- mation, and communication. These domains are interconnected – people with disabilities will not be able to benefit fully from improvements in one domain if the others remain inaccessible. An accessible environment, while particularly relevant for people with disabilities, has benefits for a broader range of people. For example, curb cuts (ramps) assist parents pushing baby strollers. Information in plain language helps those with less education or speakers of a second language. Announcements of each stop on public transit may aid travellers unfamiliar with the route as well as those with visual impairments. Moreover, the benefits for many people can help generate widespread support for making changes. To succeed, accessibility initiatives need to take into account external constraints including affordability, competing priorities, availability of technology and knowledge, and cultural differences. They should also be based on sound scientific evidence. Often, accessibility is more easily achiev- able incrementally – for example, by improving the features of buildings in stages. Initial efforts should aim to build a “culture of accessibility” and focus on removing basic environmental barriers. Once the concept of accessibility has become ingrained and as more resources become available, it becomes easier to raise standards and attain a higher level of universal design. Even after physical barriers have been removed, negative attitudes can produce barriers in all domains. To overcome the ignorance and prejudice surrounding disability, education and awareness-raising is required. Such education should be a regular component of professional training in archi- tecture, construction, design, informatics, and marketing. Policy-makers and those working on behalf of people with disabilities need to be educated about the importance of accessibility. The information and communication environment is usually con- structed by corporate bodies with significant resources, a global reach and – sometimes – experience with issues of accessibility. As a result new technologies with universal designs are usually adopted more quickly in the virtual rather than in the built environment. But even with the rapid 169 World report on disability Box 6.1. Definitions and concepts Accessibility – in common language, the ability to reach, understand, or approach something or someone. In laws and standards on accessibility, it refers to what the law requires for compliance. Universal design – a process that increases usability, safety, health, and social participation, through design and operation of environments, products, and systems in response to the diversity of people and abilities (1). Usability, though, is not the only goal of universal design, and “adaption and specialized design” are a part of providing customization and choice, which may be essential for addressing diversity. Other overlapping terms for the same general concept are “design for all” and “inclusive design”. Standard – a level of quality accepted as a norm. Sometimes standards are codified in documents such as “guidelines” or “regulations”, both with specific definitions, with different legal implications in different legal systems. An example is Part M of the Building Regulations in the United Kingdom of Great Britain and Northern Ireland. Standards can be voluntary or compulsory. Public accommodations – buildings open to and provided for the public, whether publicly owned (such as courts, hospitals, and schools) or privately owned (such as shops, restaurants, and sports stadia) as well as public roads. Transportation – vehicles, stations, public transportation systems, infrastructure, and pedestrian environments. Communication – “includes languages, text displays, Braille, tactile communication, large print, and accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means, and formats of communication, including accessible information and communication technology” (2). These formats, modes, and means of communication may be physical, but are increasingly electronic. development of information and communi- Box  6.2). Lack of access can exclude people cation technology (ICT), accessibility can be with disabilities, or make them dependent on limited by unaffordability and unavailability. others (6). As an example, if public toilets are As new technologies are created in rapid suc- inaccessible, people with disabilities will find it cession, there is a danger that access for people difficult to participate in everyday life. with disabilities will be overlooked and that Transportation provides independent expensive assistive technologies will be opted access to employment, education, and health for, rather than universal design. care facilities, and to social and recreational This chapter focuses on the environmental activities. Without accessible transportation, barriers to gaining access to buildings, roads, people with disabilities are more likely to be transport and information and communica- excluded from services and social contact (7, 8). tion and the measures needed to improve In a study in Europe, transport was a frequently access (see Box 6.1). cited obstacle to the participation of people with disabilities (9). In a survey in the United States of America lack of transportation was Understanding access to the second most frequent reason for a person physical and information with disability being discouraged from seeking work (10). The lack of public transportation is environments itself a major barrier to access, even in some highly developed countries (11). Access to public accommodations – buildings A lack of accessible communication and and roads – is beneficial for participation in information affects the life of many disabled civic life and essential for education, health people (12–14). Individuals with communica- care, and labour market participation (see tion difficulties, such as hearing impairment or 170 Chapter 6 Enabling Environments Box 6.2. Political participation Article 29 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) guarantees political rights to people with disabilities, first by highlighting the importance of accessible voting processes, electoral information and the right of people with disabilities to stand for election, and second, by advocating for people with disabilities to form and join their own organizations and participate in political life at every level. Enabling environments are critical to promoting political participation. Physical accessibility of public meet- ings, voting booths and machines, and other processes is necessary if people with disabilities are to participate. Accessibility of information – leaflets, broadcasts, web sites – is vital if people are to debate issues and exercise informed choice. For example, sign language and closed captioning on party political broadcasts would remove barriers to deaf people and those with hearing loss. People who are confined to their home or live in institutions may need postal voting or proxy voting to exercise their franchise. The wider question of attitudes is also relevant to whether people with disabilities are respected as part of the democratic process – as voters, election observers, commentators or indeed elected representatives – or identify with mainstream society (3). In particular, people with intellectual impairments and mental health conditions often face discriminatory exclusion from the voting process (4). The International Foundation for Electoral Systems has worked in different countries to promote voter registra- tion and remove barriers to participation by people with disabilities as voters and as candidates, for example, a voter education programme in Iraq, registration and voting support in Kosovo (in association with OSCE) and initiatives in Armenia, Bangladesh, and other countries. In the United Kingdom the voluntary organization United Response has campaigned and developed resources to promote electoral participation of people with intellectual impairments (5). In India, while the 1995 Disability Act guaranteed equal opportunities to disabled people, this had no impact on subsequent electoral processes. The disability movement in India campaigned vigorously for access to the political system, particularly in the run-up to the 2004 elections. The Supreme Court passed an interim order for state governments to provide ramps in all polling booths for the second round of voting in 2004, with Braille information to be available in future elections. In 2007 the Supreme Court passed an order by which the Election Commission was directed to instruct all the State Governments and Union Territories to make the following provisions for the 2009 General Elections: ■ Ramps in all polling stations. ■ Braille numbers by ballot buttons on Electronic Voting Machines. ■ Separate queues for disabled people at polling stations. ■ Electoral staff trained to understand and respect the needs of people with disabilities. As a result of the campaigning and awareness-raising, the leading parties explicitly mentioned disability issues in their 2009 manifestos. Increased political participation of people with disabilities may result in progress towards more disability- inclusive public policy. While progress has been achieved in making elections accessible, it is rare for people with disabilities to be elected to public positions. However, in countries including the United States, the United Kingdom, Germany, Ecuador, and Peru, persons with disabilities have held the highest office. In Uganda Section 59 of the Constitution of 1995 states that “Parliament shall make laws to provide for the facilitation of citizens with disabilities to register and vote,” while Section 78 provides for representation of people with disabilities in Parliament. People with disabilities are elected through an electoral college system at all levels from village up to Parliament, giving influence which has resulted in disability-friendly legislation. Uganda has among the highest numbers of elected representatives with disabilities in the world. Further information: http://www.electionaccess.org; http://www.ifes.org/disabilities.html; http://www.every- votecounts.org.uk. 171 World report on disability speech impairment, are at a significant social Available empirical evidence suggests disadvantage, in both developing and devel- that people with disabilities have significantly oped countries (15). This disadvantage is par- lower rates of ICT use than non-disabled people ticularly experienced in sectors where effective (26–29). In some cases they may be unable to communication is critical – such as those of access even basic products and services such as health care, education, local government, and telephones, television and the Internet. justice. Surveys on access to and the use of digi- ■ People who are hard of hearing may need tal media in developed countries have found speech-reading, assistive listening devices, that disabled people are half as likely as non- and good environmental acoustics in disabled people to have a computer at home, indoor settings (16). Deaf and deafblind and even less likely to have Internet access at people use sign languages. They need bilin- home (30, 31). The concept of the digital divide gual education in sign language and the refers not only to physical access to computers, national language, as well as sign language connectivity, and infrastructure but also to the interpreters, including tactile or hands-on geographical, economic, cultural and social interpreters (17, 18). According to World factors – such as illiteracy – that create barriers Health Organization (WHO) estimates, in to social inclusion (31–36). 2005, around 278 million people worldwide have moderate to profound hearing loss in both ears (19). Addressing the barriers ■ People who are blind or have low vision in buildings and roads require instruction in Braille, equipment to produce Braille materials, and access to Prior to the CRPD the main instrument library services that provide Braille, audio addressing the need for improved access was the and large-print materials, screen read- United Nations Standard Rules on Equalization ers, and magnification equipment (20, 21). of Opportunities for Persons with Disabilities, About 314 million people around the world which lacked enforcement mechanisms. A have impaired vision, due either to eye dis- United Nations survey in 2005 of 114 countries eases or uncorrected refractive errors. Of found that many had policies on accessibility, this number, 45 million people are blind but they had not made much progress (37). Of (22, 23). those countries, 54% reported no accessibil- ■ People with intellectual impairments need ity standards for outdoor environments and information presented in clear and simple streets, 43% had none for public buildings, and language (24). People who have severe 44% had none for schools, health facilities, and mental health conditions need to encounter other public service buildings. Moreover, 65% healthworkers who have the communica- had not started any educational programmes, tion skills and confidence to communicate and 58% had not allocated any financial effectively with them (25). resources to accessibility. Although 44% of ■ Non-speaking individuals need access to the countries had a government body respon- “augmentative and alternative communi- sible for monitoring accessibility for people cation” systems and acceptance of these with disabilities, the number of countries with forms of communication where they live, ombudsmen, arbitration councils, or commit- go to school and work. These include com- tees of independent experts was very low. munication displays, sign language and speech-generating devices. 172 Chapter 6 Enabling Environments The gap between creating an institu- their laws to private businesses that serve the tional and policy framework and enforc- public. ing it has been ascribed to various factors, In new construction, full compliance with including: all the requirements of accessibility standards ■ lack of financial resources; is generally feasible at 1% of the total cost (45– ■ a lack of planning and design capacity; 47). Making older buildings accessible requires ■ limited research and information; flexibility, because of technical constraints, ■ a lack of cooperation between institutions; issues of historic preservation and variability ■ a lack of enforcement mechanisms; in the resources of the owners. Laws, such as ■ a lack of user participation; the 1990 Americans with Disabilities Act in the ■ geographic and climatic constraints; United States and the Disability Discrimination ■ a lack of a disability-awareness component Act of 1995 in the United Kingdom, introduced in the training curricula of planners, archi- legal terms such as “reasonable accommoda- tects and construction engineers. tions”, “without undue hardship”, and “techni- cally infeasible”. These terms provided legally Reports from countries with laws on acces- acceptable ways in which to accommodate the sibility, even those dating from 20 to 40 years constraints in existing structures. The concept ago, confirm a low level of compliance (38–41). of “undue hardship”, for example, allows more A technical survey of 265 public buildings leeway to small businesses than to large corpo- in 71 cities in Spain found that not a single rations in making renovations that are costly building surveyed was 100% compliant (40), because of the nature of existing structures. and another in Serbia found compliance rates Expanding the scope of buildings covered ranging between 40% and 60% (40). There are by laws and standards after introducing a first reports from countries as diverse as Australia, stage of accessibility may be a better approach Brazil, Denmark, India, and the United States than trying to make everything fully accessible. of similar examples of non-compliance (39, 40, For developing countries, a strategic plan with 42, 43). There is an urgent need to identify the priorities and a series of increasing goals can most effective ways of enforcing laws and regu- make the most of limited resources. Policy and lations on accessibility – and to disseminate standards might, in the first instance, treat tra- this information globally. ditional construction in low-income rural areas differently from other types of construction – Developing effective policies focusing, perhaps, on ground-floor access and access to public toilets. After experimenting with Experience shows that voluntary efforts on different approaches for a limited period, more accessibility are not sufficient to remove bar- extensive standards might be introduced, based riers. Instead, mandatory minimum standards on knowledge of what works. The CRPD refers are necessary. In the United States, for example, to this strategy as “progressive realization”. the first voluntary accessibility standard was introduced in 1961. When it became clear that Improving standards the standard was not being used, the first law on accessibility, covering all federal buildings, was Standards for accessibility can create an ena- passed in 1968, after which standards were gen- bling environment (38–40). Evaluations of erally adhered to (44). In most countries that existing standards have found generally low took measures early on, accessibility stand- awareness about the existence of standards. ards have evolved over time, especially in the For those aware of the standards, concerns were domain of public accommodations. Recently raised about their appropriateness, especially some countries, such as Brazil, have extended for resource-poor settings, including rural 173 World report on disability areas with traditional forms of construction paving, and dual modes on interactive devices, and informal settlements. Relief workers, for such as automated teller machines in banks and instance, have reported accessibility standards ticket machines. to be inappropriate for the problems in refugee Accessibility standards rarely explicitly camps and reconstruction projects following address the needs of people with cognitive natural disasters (48). impairments or mental health conditions. Contemporary standards have been devel- Universal design guidelines do deal with mat- oped through a largely consensual process. ters such as better support for finding the way The participation of people with disabilities in and for reducing stress which can be consid- developing standards is important for providing ered in accessibility standards (52). insight about the needs of users. But a systematic, Appropriate standards are needed for rural evidence-based approach to standards is also construction in developing countries. A study on needed. Evaluations of the technical accessibility accessibility in rural villages in Gujarat, India, provisions in high-income settings have found found that current practices in affluent urban that wheelchair clearance and space require- areas in India were not appropriate in these ments are often too low (49, 50). These shortcom- villages (53). Other studies on accessibility for ings stem from the changing characteristics of persons with disability in developing countries assistive technology such as bigger wheelchairs, have focused on hygiene and the use of water from the advances in knowledge about how to (54, 55) and proposed simple, low-cost solutions facilitate access, and from the time lag for incor- to make toilet facilities, water-carrying devices, porating new knowledge into standards. water stands, and other facilities accessible. The basic features of access in new con- Standards on accessibility are also needed struction should include: in refugee camps and in informal settlements ■ provision of curb cuts (ramps) and reconstruction projects after a disaster. ■ safe crossings across the street Studies of informal settlements in India and ■ accessible entries South Africa have found that the conditions ■ an accessible path of travel to all spaces there, as in poor rural areas, require different ■ access to public amenities, such as toilets. approaches to accessibility than urban areas – providing access to squat toilets and overcoming A compilation of data on 36 countries and open drains, which create obstacles for wheel- areas in Asia and the Pacific showed that 72% chair and pedestrian use. The serious security have accessibility standards for either the built and privacy barriers in these communities are environment or public transport or both. An as important as independence in carrying out assessment of the content of standards and cov- daily tasks (56). The Sphere Handbook, devel- erage is required to understand the scope and oped by more than 400 organizations around application of these norms (51). Most acces- the world, sets out the minimum standards in sibility standards concentrate on the needs of a disaster response and includes approaches for people with mobility impairments. The rel- meeting the needs of people with disabilities. evant standards, for instance, contain many In its 2010 update disability is addressed as an criteria to ensure enough space and manoeu- issue cutting across all the main sectors, includ- vring clearances for wheelchair and walking- ing water supply, sanitation, nutrition, food aid, aid users. It is also important to meet the needs shelter, and health services (57). of people with sensory impairments, primarily Standards in industrialized countries have avoiding hazards and finding the right way. To driven a “global convergence” in accessibility this end, communication methods have been standards (8) rather than standards in devel- devised – including visual alarms and better oping countries reflecting cultural or eco- contrasts on signs, Braille signage, tactile nomic conditions (58). Whether this accounts 174 Chapter 6 Enabling Environments for the lack of implementation of accessibility non-compliance and correcting the offence. laws and standards in many countries requires Government funding agencies – including further research. those that fund health care facilities, trans- The International Organization for portation, and schools – can also review plans Standardization developed an international as part of their approval process, using con- accessibility standard using a consensual sistent standards. approach, though not all regions of the ■ Accessibility audits can also be conducted world are represented on the committee (59). by disability organizations – or even by International and regional organizations can individual citizens. Such audits can encour- help improve standards by providing rec- age compliance. In Malaysia, for example, ommendations for member countries. The groups working on behalf of disabled people European Concept for Accessibility Network are completing audits of major hotels (see has taken this approach by publishing a tech- Box 6.3). nical manual to help organizations develop standards and regulations incorporating uni- The lead agency versal design (60). An international effort is needed to develop A lead government agency can be designated to standards appropriate for different stages of take responsibility for coordinating the activi- policy evolution, different levels of resources, ties of other bodies involved with accessibility, and cultural differences in construction. particularly those that fund the construction of public buildings and monitoring the imple- Enforcing laws and regulations mentation of laws, regulations, and standards. Furthermore, it could oversee the licensing of The reporting guidelines for the CRPD obliges design professionals, businesses, and services States Parties to report on progress in achieving to ensure that accessibility is part of profes- Article 9 (Accessibility). Systematic compari- sional training curricula. son is difficult, but several practices can lead to Implementing accessibility programmes better enforcement: requires adequate funding for the lead agency ■ Laws with mandatory access standards are and other responsible agencies. Appropriate the most effective way to achieve accessibility. financing mechanisms need to be developed The first accessibility standard in the world at various budget levels to ensure efficient flow – a voluntary one in the Unites States – dem- of funding. There may often be penalties for onstrated a very low level of adoption (44). non-compliance in access legislation, but the Similar results are reported in other countries law may not be enforced, because of a lack of (39–41, 61). Standards and compliance should resources (38). be regulated and mandated by law. ■ Good design reviews and inspections ensure Monitoring that accessibility will be provided from the day a building is completed. Accessibility Monitoring and evaluation of the implemen- standards thus need to be part of building tation of accessibility laws and standards regulations. The delays caused by the denial will provide information to make continual of permits for construction or occupancy improvements in accessibility for people should provide an incentive for builders and with disabilities. An impartial monitoring developers to meet the rules. If there are no body, preferably outside government, could design reviews or inspections, the law can be designated and funded to provide periodic require effective penalties for non-compli- independent evaluations of progress on acces- ance, as well as a mechanism for identifying sibility laws and standards and to recommend 175 World report on disability Box 6.3. Buildings without barriers in Malaysia In recent years Malaysian law has been changed to ensure that people with disabilities have the same rights and opportunities as others. Between 1990 and 2003 Malaysia introduced and revised the standard codes of practice on accessibility and mobility for people with disabilities. In 2008 the People with Disabilities Act was introduced. This legislation, harmonizing with the CRPD, promotes rights of access for persons with disabilities to public facilities, housing, transport, and ICT, as well as to education and employment, cultural life and sport. The government priorities are to increase public awareness of the needs of disabled people and to encourage young designers to create more innovative and inclusive designs. Local authorities in the country require architects and builders to adhere to the Malaysian Standard Codes of Practice for building plans to be approved. After a building is constructed, an “access audit” examines its usability by disabled people. The purpose of this audit is: ■ to increase awareness among planners and architects about barrier-free environments for people with disabilities; ■ to ensure, in both new buildings and retrofitting, the use of universal design concepts and adherence to the standard codes relating to people with disabilities; ■ to evaluate the degree of access to existing public buildings and recommend improvements. University schools of architecture can be a focus of education and research efforts for both students and practicing professionals. The International Islamic University in Malaysia recently introduced “barrier-free architecture” as an elective subject in its Bachelor of Architecture programme. In addition, the new Kaed Universal Design Unit at the university’s Kulliyyah School of Architecture and Urban Design seeks to: ■ create awareness of design issues for children, disabled people and older people; ■ conduct research and develop new technologies; ■ disseminate information; ■ educate the design profession and the public on design regulations. improvements, as with the United States ■ In Winnipeg, Canada, a local action group National Council on Disability (62, 63). This worked with the municipal administration body should have a significant membership of in an assessment of barriers, with recom- people with disabilities. Without such monitor- mendations for their removal (65). ing, there will be no pressure on governments ■ In Kampala, Uganda, following the develop- to move towards full accessibility. ment of accessibility standards in association In addition to an official monitoring with the government, a National Accessibility body, a network of local action organizations Audit Team was created by Uganda National is essential for supporting the process. Such Association on Physical Disability (66). a network can also share information and help local building officials to review build- There is an important role for people with ing plans, ensuring that a lack of knowledge disabilities and other members of the general among officials and designers does not under- public to be vigilant and seek redress, through mine the goals of the law. legal and administrative actions, when build- ■ In Norway, after a monitoring exercise ing owners do not fulfil their obligations under found that few local communities had car- the law. A combination of regulation, persua- ried out any accessibility planning, the gov- sion, and powerful interest groups can be most ernment set up pilot projects around the effective (see Box 6.3) (67). country, to make local communities better able to provide accessibility for people with disabilities (64). 176 Chapter 6 Enabling Environments Box 6.4. Creating an environment for all in India India had outlined provisions for accessibility in the Persons with Disabilities Act, 1995 and building by-laws on accessibility. Research in four districts of Gujarat, India – by a local development organization, UNNATI Organisation for Development Education – identified accessibility to physical spaces as a key area for mainstreaming the rights of people with disabilities. A project was launched to build awareness in the region on accessibility, increase the capacity for local action, and build strategic alliances for advocacy by: ■ setting up an informal “access resource group”, bringing together architects, builders, designers, engineers, people with disabilities, and development and rehabilitation professionals; ■ staging public events highlighting what can be done to improve access; greater stress was placed on the message that “access benefits all”. Campaigns had the greatest impact when user groups acted collectively for their rights; ■ conducting media training; ■ holding workshops on accessibility, including national policies on disability and access; ■ producing educational materials. Initially, the access group contacted public and private institutions to raise awareness on the need for better accessibility. Within two years, they were receiving requests for audits. In these audits, members of the access group worked with people with disabilities to formulate technical recommendations. Between 2003 and 2008, 36 audits were conducted of parks, government offices, academic institutions, banks, transport services, development organizations, and public events. Modifications were made in about half the venues, including: ■ providing accessible parking spaces, ramps, and lifts ■ installing accessible toilets ■ adjusting counter heights ■ providing tactile maps and improving signage. For example, with government support, the State Administrative Training Institute for government officials in Ahmedabad, the state capital, has become a model of accessible building. Programmes of modifications required regular follow-up to support the implementation of recommendations for standard specifications. The maintenance of access features was best achieved when both users and managers of a space were aware of the importance of these features. The project has shown architects and builders how to comply with the access provisions in the Persons with Disabilities Act 1995 and local access by-laws. A design institute in Ahmedabad now offers an elective course on universal design. People with disabilities have seen benefits in greater dignity, comfort, safety, and independ- ence. All the same, non-compliance has resulted in new barriers. Accessibility for people with visual impairments remains a problem, with signage standards not commonly followed due to limited information in accessible user-friendly formats. Source (69). Education and campaigning disabilities, design educators and professionals (68), government regulators, business owners Education, along with technical assistance and managers, and building developers and on enforcement procedures, is essential to contractors (see Box 6.4). improve awareness of the need for accessibil- ity and understanding of universal design. Educational programmes should be targeted to all those involved in enforcing accessibil- ity laws and standards – including people with 177 World report on disability Adopting universal design ■ setting up “special transport services” for people with disabilities; Universal design is practical and affordable, ■ developing campaigns and education pro- even in developing countries (53, 54). Simple grammes to improve policies, practices, examples in lower income settings include: and the use of services. ■ a seating platform next to a communal hand pump to provide an opportunity for Specific obstacles are related to each of rest and enable small children to reach the these goals. pump (54); Lack of effective programmes. Even where laws on accessible transportation exist, there is limited degree of compliance with the laws, ■ ramped access and a concrete apron at especially in developing countries (7, 74). The the pump post to help wheelchair users, benefits of universal design features are often making it possible to bring large, wheeled not well understood. For this reason, many water containers to the village pump and policy initiatives are not incorporated – such as reduce the number of trips (53); using raised boarding platforms at the entrance ■ a bench fitted over a pit latrine, making to buses to reduce the boarding times for all pas- latrine use easier (54). sengers, as well as increasing accessibility (7). Obstacles to special transport services An important application for universal and accessible taxis. Special transport services design is to provide for emergency evacuations (STS) are designed specifically for people with from buildings. Experience from major disasters disabilities or for other groups of passengers has shown that people with disabilities and older unable to access public or private transporta- people are often left behind (70). Other problems tion independently. STSs and taxis are forms can also arise, such as when people dependent of “demand-responsive transport” providing on ventilators are moved by unprepared first service only when requested by the customer. responders (71). In many places, work is being But accessible vehicles are expensive to pur- done on finding better management approaches chase, and the cost to the provider of operating for emergencies by improving building design, the service is high. And if demand increases, providing training, and running preparedness for example due to population ageing, the eco- exercises (72, 73). Universal design can also help nomic burden of STS, if provided by a public in enabling communications and assistance agency, can become unsustainable (75, 76). during evacuations, with new technologies For the service user, availability is often ensuring that people with sensory and cogni- limited because of eligibility requirements tive impairments are kept informed about the and travel restrictions. While taxis are poten- emergency and not left behind. tially a very good way to supplement acces- sible public transit, most taxi services do not provide accessible vehicles. In addition, there Addressing the barriers in have been many instances of discrimination public transportation by taxi operators against people with disabili- ties (77, 78). Worldwide, initiatives to develop accessible Physical and information barriers. Typic- public transportation systems focus primarily al barriers in transportation include inacces- on: sible timetable information, a lack of ramps for ■ improving accessibility to public transpor- vehicles, large gaps between platforms and vehi- tation infrastructure and services; cles, a lack of wheelchair anchoring in buses, and inaccessible stations and stops (7, 79). 178 Chapter 6 Enabling Environments Existing commuter rail systems and fer- Lack of staff awareness and other barri- ries are particularly difficult to make accessible ers. Operators of transport often do not know because of variations in platform heights, plat- how to use the accessibility features that are form gaps, and vehicle designs (80). Improved available or how to treat all passengers safely visual environments are needed to accommo- and courteously. Outright discrimination by date people with visual impairments and elderly operators, such as not stopping at a bus stop, is people – for example, with colour-contrasting not uncommon. Operating rules may conflict railings and better lighting (8). with the need to assist people with disabilities. Lack of continuity in the travel chain. The In many places there are no fixed procedures “travel chain” refers to all elements that make for identifying and resolving problems with the up a journey, from starting point to destination service. Overcrowding, a major problem, par- – including the pedestrian access, the vehicles, ticularly in developing countries, contributes and the transfer points. If any link is inacces- to disrespectful behaviour towards passengers sible, the entire trip becomes difficult (81). with disabilities. Many mass transit providers, particularly in developing countries, have implemented acces- Improving policies sibility only partially, for example by providing a limited number of accessible vehicles on each Including access to transportation as part of route, making improvements only to the main the overall legislation on disability rights is a stations, and providing access only on new lines. step towards improving access. Standards for Without accessibility throughout the travel accessibility in developed countries, however, chain, the job is incomplete. Inaccessible links are not always affordable or appropriate in require taking an indirect route, creating the low-income and middle-income countries (7). barrier of longer travel times. The goal must be Solutions should be found to meet challenges for people to have access to all vehicles and the specific to developing country contexts. Where full service area, as well as the pedestrian envi- aid programmes provide significant funding to ronment (82). But progressive realization may build new mass transit systems, access require- be the most practical short-term response. ments can be included. Lack of pedestrian access. A major obsta- Coordinated political action, both national cle to maintaining continuity of accessibility in and local, is needed to pass laws and ensure the travel chain is an inaccessible pedestrian that laws are enforced. Local action is particu- environment, particularly in the immediate larly important, not only when new systems surroundings of stations. Common problems are planned, but also to keep a running check here include: on operations. National organizations in many ■ nonexistent or poorly maintained pavements; countries have expertise in accessible transpor- ■ inaccessible overpasses or underpasses; tation. Because of their special knowledge, they ■ crowded pavements in the vicinity of sta- often receive government funding to document tions and stops; and disseminate best practices and offer training ■ hazards for people with visual impairments programmes to transport providers and to local and deafblind people; groups working on behalf of disabled people. ■ lack of traffic controls; National laws and rules on funding can ■ lack of aids at street crossings for people oblige local transit authorities to have advisory with visual impairments; bodies consisting of people with disabilities. ■ dangerous local traffic behaviours. Fare structures are a critical element of local transit policies: reduced or free fares for These can be a particular problem in low- people with disabilities, funded by local or income urban environments. national government, are a feature of most 179 World report on disability accessible public transportation initiatives, as availability and affordability. Information in the Russian Federation. technology is making it possible to optimize routes and assign passengers to specific vehi- Providing special transport cles in real-time while vehicles are on the services and accessible taxis road. Originally developed in Sweden using a f leet of shared ride vans and since intro- Transportation agencies can be required by law duced in some other European countries, to provide STS as part of their service. In such these “f lexible transport systems” (FTSs) a case this may be an incentive for agencies provide services on demand, at about half to increase accessibility in the overall system the cost of a taxi and with greater f lexibility due to the eventual high cost of providing STS. in reservation times, availability, and routes While STS initially appears less costly and (85). The cost of accessible taxis, though, and easier to implement than removing barriers to the infrastructure for an FTS, may be pro- mass transportation, relying on that alone for hibitive for some developing countries (but accessible transport leads to segregation. And note the examples of affordable van solutions in the longer term it may result in high and pos- from India and Brazil). As these innovations sibly unsustainable costs as the proportion of are adopted more widely, there should be older people in the population increases. attempts to make them cheaper and bring Shared vans. Shared vans equipped with them to low-income and middle-income lifts, individually owned and operated by countries. licensed providers, can be a viable way to start an STS programme for fairly small initial public Universal design and investment. In India a team of designers found removing physical barriers inexpensive ways of making small vans acces- sible for people with disabilities, with costs as Making every vehicle entrance-accessible in low as US$ 224 (83). Having a wider passenger existing systems may require purchasing new base can help make shared van services more vehicles and, in some cases, renovating stops sustainable in the longer term. In Curitiba, and stations. In Helsinki, Finland, the existing Brazil, owner-operated vans with lifts pick up tram system was made accessible by using both passengers for a flat-rate fare. these methods. The stops in the middle of the Accessible taxis. Accessible taxis are an road are on safety islands equipped with short important part of an integrated accessible ramps at each end, accessed from the middle of transportation system because they are highly marked pedestrian crossings. The islands are at demand-responsive (77, 84). Taxis and STSs are the same level as the low floors of the new vehi- now being combined in many places. Sweden cles. Passengers can now wait in a safer envi- relies extensively on taxis for its STS, as do ronment, and there is no need to mount steps other countries (77, 85). In developing coun- to enter the vehicle. tries, accessible taxis are slower to come on line. Portable lifts or manual folding ramps can Licensing regulations can require taxi fleets not create access to existing vehicles. But such solu- to discriminate against people with disabilities. tions should be viewed as temporary, because They can also require some or all vehicles to they require properly trained attendants avail- be accessible. In the United Kingdom a special able for every vehicle arrival or departure. Nor initiative to make taxis accessible has resulted are elevated small platforms served by lifts or in a fleet that is 52% accessible (86). ramps the most effective solutions because Flexible transport systems. Innovative of the difficulty of stopping a train or bus in universal design solutions could increase exactly the right position. 180 Chapter 6 Enabling Environments Rail systems. Bus and tram systems can international events new transit lines are often potentially be renovated at relatively low cost added to accommodate the expected large over time as new vehicles go into service. But numbers of people attending (80). Although renovating existing rail systems presents vari- there can be resistance to new services from ous technical difficulties, including (80): existing taxi operators and local residents (89), ■ dealing with the size of the gaps between these projects offer the opportunity to create a vehicle floors and the platforms, which may good model that can subsequently be applied be different at every station (87); more widely in the country. ■ increasing space in vehicles for wheelchair Alternative forms of transport. Rickshaw access; and pedicab services, common in many Asian ■ providing access to tracks at different levels cities, are gaining in popularity on other con- within stations. tinents. An Indian design team has developed a type of pedicab that is easier for people with Technologies for automated lifts, bridge- disabilities to get in and out of, improving plates, and ramps overcome the problems with access for all users and providing more comfort platforms. Some new accessible cars can be pro- for the driver (83). Installing separate lanes and vided on each train, and their number can be paths for bicycles, tricycles, and scooters can increased over time. Old single-level cars can be improve safety and accommodate the larger renovated to provide space by removing exist- tricycle-style wheelchairs often used in Asia. ing seats or replacing them with folding seats. Universal design. Universal design is Elevators or inclined lifts to reach upper or increasingly being adopted in bus and rail tran- lower platforms can also be installed. A useful sit operations in high-income countries, as in starting initiative is to make the main stations Copenhagen’s underground rail system (76, 90, fully accessible, along with accessible bus trans- 91). The most important universal design inno- portation from the accessible stations to the vation is the low-floor transit vehicle, adopted locations served by the inaccessible stations. for heavy rail, light rail, trams, and buses, In time more stations can be made accessi- providing almost level access from curbs and ble. Following the Transportation Accessibility short-ramp access from street levels. Improvement Law (2000), the Tokyo subway Other examples of universal design include: system has become significantly more accessi- ■ lifts or ramps on all transit vehicles – not ble: in 2002, 124 of the 230 stations in the Tokyo only on a limited number; area had lifts; by 2008, 188 had lifts. A web site ■ a raised pad at a bus stop with ramp access, offers information on accessible routes. making it easier for someone with mobility Bus rapid transit systems. Large cities impairment to enter a bus, helping visually – including Beijing (China) and New Delhi impaired and cognitively impaired indi- (India) – have embarked on major programmes viduals find the stop, and improving the to upgrade their public transport, often using safety of all those waiting for a bus (79); rail (88). There is a global trend towards “bus ■ real-time information on waiting times; rapid transit” which is particularly pronounced ■ smart cards for fare collection, gates, and in developing countries of Central and South ticketing; America and of Asia. Low-floor buses are ■ visual and tactile warning systems at the often used to provide access. Accessible bus edge of platforms – or full safety barriers rapid transit systems have been constructed along the entire platform; in Curitiba (Brazil), Bogotá (Colombia), Quito ■ railings and posts painted in bright con- (Ecuador) and more recently Ahmedabad trasting colours; (India) and Dar es Salaam (United Republic ■ audible signs to help people with visual of Tanzania) (88). When cities host important impairments find gates and identify buses. 181 World report on disability Box 6.5. Integrated public transport in Brazil In 1970 the city of Curitiba, Brazil, introduced a modern transportation system designed from the start to replace a system of many poorly coordinated private bus lines. The aim was to provide public transport that would be so effective that people would find little need for private transport. The system was to provide full accessibility for people with disabilities, as well as benefits for the general population from the adoption of universal design. The new system includes: ■ express bus lines with dedicated right-of-way routes into the city centre; ■ conventional local bus routes connecting at major terminals; ■ interline “connector” buses travelling around the perimeter of the city; ■ “Parataxi” vans for door-to-terminal service for those requiring them. All terminals, stops, and vehicles are designed to be accessible. At terminals used by different types of transport, local buses deliver passengers to the stops on the express bus system. The vehicles are large “bus-trains” – two- unit or three-unit articulated buses, each carrying 250–350 people. These bus-trains load and unload directly onto raised platforms with the help of mechanized bridge plates that span the platform gap. All express bus terminals have ramps or lifts. Private individuals operate the “parataxi” vans. Originally, these were designed specifically for people with dis- abilities, as a means of getting from their homes to a station. There was not enough demand, though, to make the vans economically viable on this basis, and they are now available for all passengers. The Curitiba system is a good example of universal design. It gives a high level of access, and the integrated system of local routes, interline routes, and express routes provides a convenient and seamless means of travelling. The vehicles for each type of line are colour-coded, making them easy to distinguish for those who do not read. Although there are newer rapid-transit systems in existence, lessons can be learned from Curitiba. ■ Even in developing countries accessibility can be provided relatively easily throughout a transportation system if it is an integral part of the overall plan from the start. ■ Platform boarding allows for the convenient and rapid movement of passengers and provides full accessibility. ■ The construction of “tube” stations requires the express buses to stop at a distance from the edge of the platform, to avoid hitting the curved station walls. In Curitiba, the emphasis was on improving the boarding and alighting from vehicles for people with mobility impairments. While certain features help other people with disabilities to find their way around the system, more attention needs to be paid to people with sensory and cognitive impairments. ■ web access to real-time information about ■ better interior and exterior handrails at accessible routes and temporary obstacles, entrances to buses; such as a lift out of order (80). ■ priority seating; ■ improved lighting; Many of the universal design innovations ■ raised paved loading pads where there are mentioned above are generally too expensive no pavements; for developing economies. Affordable univer- ■ the removal of turnstiles. sal design concepts are needed for low-income and middle-income countries. More research Curitiba’s integrated system is a good model is needed to develop and test for effectiveness of a less expensive universal design approach solutions that are inexpensive and appropriate (see Box  6.5). Delhi Metro also incorporated for such countries. Some simple low-cost exam- universal design features in the design phase at ples of universal design include: little extra cost (43). ■ lower first steps; 182 Chapter 6 Enabling Environments Assuring continuity in face when using transport (93). People with dis- the travel chain abilities can usefully be involved in such train- ing programmes and through the programmes Establishing continuity of accessibility establish valuable communications links with throughout the travel chain is a long-term transport staff. Disabled people’s groups also goal. Creating steady improvements over a can collaborate with transport managers to set longer period requires campaigning, intelligent up “secret rider” programmes, in which people policy-making with appropriate resource allo- with various disabilities travel on transport as cation, and effective monitoring. Methods for passengers to uncover discriminatory practices. achieving the goal include (8, 92): Public awareness campaigns are a part of the ■ determining the initial priorities, through educational process: posters, for instance, can consultations with people with disabilities teach passengers about priority seating. and service providers; ■ introducing accessibility features into regu- lar maintenance and improvement projects; Barriers to information ■ developing low-cost universal design and communication improvements that result in demonstrable benefits to a wide range of passengers, thus Accessible information and communication gaining public support for the changes. technology covers the design and supply of information and communication technology Improving the quality of pavements and products (such as computers and telephones) roads, installing ramps (curb cuts), and ensur- and services (telephony and television) includ- ing access to transport facilities is a key aspect ing web-based and phone-based services (94– of the travel chain and indispensable for people 98). It relates to the technology – for example, with disabilities. Planning pedestrian access to control and navigation, through twisting a stations involves a range of agencies – including knob or clicking a mouse, and to the content highway departments, local business groups, – the sounds, images, and language produced parking authorities, and public safety depart- and delivered by the technology. ments – and would benefit from involvement by ICT is a complex and fast-growing industry, people with disabilities. Neighbourhood partic- worth some US$ 3.5 trillion worldwide (99). An ipation will contribute local knowledge – such increasing number of basic functions of society as the location for pedestrian crossings on dan- are organized with and delivered by ICT (100, gerous streets. Independent organizations with 101). Computer interfaces are used in many areas special expertise in pedestrian planning and of public life – from banking machines to ticket design can help with local surveys and plans. dispensers (102). Automation is often promoted as a cost-saving measure by dispensing with human Improving education and training interfaces, yet this can disadvantage those persons with disabilities – and others – who will always Continual education of all those involved in need personal assistance with some tasks (103). transportation can make sure that an acces- In particular, the Internet is increasingly sible system is developed and maintained (92). a channel for conveying information about Education should start with training for manag- health, transport, education and many govern- ers, so that they understand their legal obligations. ment services. Major employers rely on online Front-line staff need training about the range application systems for recruitment. Accessing of disabilities, discriminatory practices, how to general information online enables people with communicate with people with sensory impair- disabilities to overcome any potential physi- ments, and the difficulties people with disabilities cal, communication and transport barriers in 183 World report on disability accessing other sources of information. ICT People with disabilities should have the accessibility is therefore needed for people to same choice in everyday telecommunications as participate fully in society. other people – in access, quality, and price (28). People with disabilities, once they are able ■ People with hearing and speech impair- to access the web, value the health informa- ments, including the deafblind, need public tion and other services provided on it (31). or personal telephones with audio outputs For example, one survey of Internet users adjustable in volume and quality, and equip- with mental health conditions found that ment compatible with hearing aids (28, 110). 95% used the Internet for diagnostic-specific ■ Many people need text telephones or vide- information, as opposed to 21% of the general ophones with visual displays of text, or sign population (104). Online communities can be language in real-time telephone communi- particularly empowering for those with hear- cations (111). A relay service with an opera- ing or visual impairments or autistic spec- tor is also required, so that users of text trum conditions (105) because they overcome telephones and videophones can communi- barriers experienced in face-to-face contact. cate with users of ordinary voice telephones. People with disabilities who are isolated value ■ People who are blind or deafblind and the Internet in enabling them to interact with cannot access visual displays at all require others and potentially to conceal their differ- other options such as speech and audio and ence (104, 106). For example, in the United Braille (112). Those with low vision need Kingdom the state broadcasting company has visual presentations to be adjusted for font set up a web site called “Ouch!” for people type and size, contrast, and use of colours. with disabilities (107) and created special ■ People with dexterity impairments and web materials for people with intellectual upper extremity amputees may experi- impairments. ence difficulties with devices requiring fine Future innovations in ICT could benefit manipulation, such as small keyboards people with disabilities and older persons by (113). Switch interfaces, alternative key- helping them overcome barriers of mobil- boards or use of head and eye movement can ity, communication, and so on (108). When be possible solutions to access computers. designing and distributing ICT equipment and ■ To use computers and access the web, some services, developers should ensure that people people with disabilities need screen read- with disabilities gain the same benefits as the ers, captioning services, and web page wider population and that accessibility is taken design features such as consistent naviga- into account from the outset. tion mechanisms (114–116). ■ People with cognitive impairments, includ- Inaccessibility ing age-related changes in memory, and older adults may find the various devices Mainstream ICT devices and systems, such and online services difficult to understand as telephones, television, and the Internet, are (117–120). Plain language and simple oper- often incompatible with assistive devices and ating instructions are important. assistive technology, such as hearing aids or screen readers. Overcoming this requires: The lack of captioning, audio description ■ designing the mainstream features for the and sign language interpretation limit informa- widest possible range of user capabilities; tion access for people who are deaf and hearing ■ ensuring the device is adaptable for an even impaired. In a survey conducted by the World wider range of capabilities; Federation of the Deaf, only 21 of 93 countries ■ ensuring the device can connect with a were found to provide captioning of current wide range of user interface devices (109). affairs programmes and the proportion of 184 Chapter 6 Enabling Environments programmes with sign language was very low. include business web sites, mobile telephony, tel- In Europe only one tenth of national-language ecommunications equipment, TV equipment, broadcasts of commercial broadcasters were and self-service terminals (124). Rapid devel- provided with subtitles, only five countries opment in ICT often leaves existing regulation provided programmes with audio description, outdated – for example, mobile phones often and only one country had a commercial broad- are not covered under legislation on telephony. caster that provided audio description (28). A Furthermore, technological developments and report on the situation in Asia has found that convergence across sectors blurs what were closed captioning or sign-language interpreta- previously clear cut distinctions – for example, tion of television news broadcasts is limited telephony over the Internet often falls outside (39). Where it is available, it is usually confined the scope of legislation regarding landlines. to large cities. Standards for the development of ICT are Furthermore, television programmes dis- lagging behind the development of accessibil- tributed over the Internet are not required to ity standards for public accommodations and have closed captioning or video description – public transport. A compilation of data on 36 even if they originally contained captions or countries and areas in Asia and the Pacific description when they were shown on televi- showed that only 8 governments reported that sion. As the dissemination of television pro- they had accessibility standards or guidelines grammes expands, moving from broadcast to for ICT while 26 reported to have accessibility cable and Internet and from analogue to digi- standards for either the built environment or tal, there is greater uncertainty over regulatory public transport or both (51). frameworks and whether the same rights to From a legislative and policy perspective, have material subtitled still pertain. sectoral approaches to ICT provide challenges. Few public and even fewer commercial It may be impractical and inefficient to consider web sites are accessible (28, 116, 121). A United a wide range of sectoral legislation to be devel- Nations “global audit” examined 100 home oped to address the full spectrum of ICT and pages on the web drawn from five sectors in 20 their applications. Consistency of standards for countries. Of these, only three achieved “single- the same product or for services across sectors A” status, the most basic level of accessibility would be more difficult to achieve with this (2). A study in 2008 found that five of the most type of vertical approach. Regulating services popular social networking sites were not acces- separately from equipment has also been found sible to people with visual impairment (122). unhelpful in ensuring access to all supply chain Surveys showing that disabled people have a components – content production, content much lower rate of web use than non-disabled transmission, and content rendering through people indicate that the barriers are associated end-user equipment (124). A key challenge is with having a visual or dexterity impairment influencing decisions in the development of (31). Those who are deaf or have difficulties products and services far enough back in the with mobility do not experience the same bar- supply chain to guarantee access. riers, if socioeconomic status is controlled for. Regulation of television and video does not always keep pace with technology and Lack of regulation service developments. For example, video carried on computers and hand-held devices While many countries have laws covering ICT, is not always accessible. The United States the extent to which these cover accessible ICT Telecommunications Act of 1996 regulated is not well documented (51, 123). In developed “basic” services, such as telephony. But it did countries, many ICT sectors are not covered not regulate “enhanced” services, such as the by existing legislation. Some important gaps Internet. This allowed the Internet to flourish 185 World report on disability without regulation, neglecting access require- generation obsolete – including peripherals, ments. With services converging and the dis- such as the screen readers used by disabled tinction between basic and enhanced services people. steadily eroding, this has left major gaps in regulation (125). One study of United States web designers found that they would make web Addressing the barriers to sites accessible only if the government required information and technology them to (126). Deregulation and self-regulation potentially undermine the scope for govern- Given the wide spectrum of ICT products, ment action to mandate disabled access (127). services, and sectors (commerce, health, edu- cation, and so on) a multisectoral and multi- Cost stakeholder approach is required to ensure accessible ICT. Governments, industry and The high cost of many technologies limits end-users all have a role in increasing acces- access for people with disabilities, particularly sibility (28, 97, 109, 110, 127, 133, 134). That in low-income and middle-income countries. includes raising awareness of need, adopting In particular, intermediate and assistive tech- legislation and regulations, developing stand- nology are often unaffordable or unavailable. ards and offering training. For example, a United Kingdom study found An example of a partnership working that the most common reason for people with towards these aims is G3ict, which is a public- disabilities not using the Internet was cost – of private partnership, part of the United Nations the computer, of online access, and of assistive Global Alliance for ICT and Development. devices (128). A screen reader such as JAWS Among other activities, G3ict is assisting can cost US$ 1000 (102), though there are some policy-makers around the world to implement open source versions, such as the Linux Screen the ICT accessibility dimension of the CRPD, Reader. Internet-based high-speed broadband with the help of a special “e-accessibility technology has only made the differences more toolkit”. In collaboration with the International apparent. While this technology can deliver Telecommunications Union (ITU), G3ict is services that people with disabilities need, such also developing the first digital accessibility as sign-language videophone, it is often not and inclusion index for people with disabilities. available, and when available, its cost makes it This is a monitoring tool surveying countries unaffordable for many (129). that have ratified the CRPD to measure how far they have implemented the digital accessibil- Pace of technological change ity provisions defined in it, scoring on 57 data points (135). Assistive technology for accessing ICT quickly Improved ICT accessibility can be becomes obsolete as new technology develops achieved by bringing together market regu- at an increasing rate (130–132). Almost every lation and antidiscrimination approaches time new technology is introduced, people with along with relevant perspectives on con- disabilities do not obtain the full benefit (125). sumer protection and public procurement Few ICTs are designed to be inherently (124). In Australia a complaint from a deaf accessible. Ways of resolving problems of access customer led to a change in the mainstream in one generation of computer hardware or telecommunications legislation to include software do not always carry over to the next a duty on operators to provide necessary generation. Mainstream software upgrades, equipment under equivalent conditions. for instance, make software from the previous Competition, rather than regulation, can also 186 Chapter 6 Enabling Environments drive improvements. In Japan a civil service providers to guarantee interoperability between magazine runs an “e-city” competition, and the captioning services and receiver equipment different municipalities strive to excel in (126). Legislation can also ensure subtitling of information and communication categories programmes. For example, the Danish Act on that include criteria for accessibility (136). Radio and Television Broadcasting (2000) cre- Those producing and providing ICT-based ates an obligation for public service television products and services and those deploying ICT channels to promote access for disabled people, products and services have complementary roles by subtitling (138). in providing accessible ICT (124). Producers Accessibility to public web sites can be and providers can incorporate accessibility fea- addressed through a broad range of legisla- tures in the products and services they design tion directed towards the equality of persons and sell, and governments, banks, educational with disabilities or as part of wider legisla- institutes, employers, travel agents, and the like tion on eGovernment or ICT. Vague antidis- can ensure that the products that they pro- crimination legislation, the main legislative cure and use do not present access barriers to approach for business web sites, is unlikely employees or customers with disabilities. to be effective. Where legislation exists, regu- latory gaps can be addressed through revi- Legislation and legal action sions such the United States 21st Century Communications and Video Accessibility Act States that currently address ICT accessibility and the Federal Communications Commission do so through both bottom-up and top-down ruling that Voice Over Internet Protocol (the legislative approaches as well as non-legislative delivery of voice communications over the mechanisms. Top-down approaches impose Internet which can improve access for visually direct obligations on those producing ICT impaired users) falls under Section 255 of the products and services, such as close caption- 1996 Telecommunications Act. The legisla- ing on TVs and relay features to enable people tive approach can be supported by a range of with hearing impairments to use the telephone support measures – awareness-raising, train- system. Bottom-up approaches include con- ing, monitoring, reporting, providing techni- sumer protection and non-discrimination cal guidelines and standards, and labelling legislation that explicitly cover the accessibil- – for providers of public web sites, as in some ity of ICTs and protect the rights of users and European countries (124). consumers. For example, the Republic of Korea Legal challenges under disability discrimi- combines both approaches with the 2007 Korea nation laws have led to improvements in tel- Disability Discrimination Act and the 2009 ecommunications service in several countries. National Informatization Act, which together In Australia, for instance, the decision in 1995 provide information access rights and reason- in Scott and DPI v. Telstra defined telecommu- able accommodation. nications access as a human right (100). Title IV Evidence from a benchmarking study in of the Americans with Disabilities Act directed Europe showed that countries with strong providers of telephone services to provide relay legislation and follow-up mechanisms tend to systems for customers with hearing or speech achieve higher levels of ICT access (137). impairments at no additional cost, and compli- Legislation, such as the United States ance has been very high (126). Television Circuitry Decoder Act, can be a Legal action can ensure compliance. In way of ensuring that television manufacturers Australia, a landmark legal case involved a man are required to include technology supporting who sued the Organizing Committee of the closed captioning in addition to obliging cable 2000 Olympic Games in Sydney on the grounds 187 World report on disability Box 6.6. Laws on accessible technology Access to information and communication needs to be addressed in a wide range of laws to ensure full access for persons with disabilities, as in the United States. Procurement. Section 508 of the Rehabilitation Act requires electronic and information technology – such as federal web sites, telecommunications, software, and information kiosks – to be usable by people with disabilities. Federal agencies may not purchase, maintain, or use electronic and information technology that is not acces- sible to people with disabilities, unless creating accessibility poses an undue burden (139). Other jurisdictions, including states and municipalities, as well as some institutions such as colleges and universities, have adopted all or parts of Section 508. Closed captioning. Section 713 of the Communications Act (1996) obliges distributors of video programming to provide closed captioning on 100% of new, non-exempt English-language video programmes. Emergency services. Title II of the Americans with Disabilities Act (1990) requires direct teletypewriter access to public safety answering points. Section 255 of the Communications Act (1996) requires common carriers to provide emergency access to public safety answering points. Hearing-aid compatible telephones. Section 710 of the Communications Act (1996) requires all essential tel- ephones and all telephones manufactured in or imported into the United States to be hearing-aid compatible. The obligation applies to all wireline and cordless telephones and to certain wireless digital telephones. Hearing-aid compatible telephones provide inductive and acoustic connections, allowing individuals with hearing aids and cochlear implants to communicate by telephone. Telecommunications equipment and services. Section 255 of the Communications Act (1996) requires telecom- munication service providers and manufacturers to make their services and equipment accessible to and usable by people with disabilities, if these things can be readily achievable. Telecommunications relay services. Section 225 of the Communications Act (1996) establishes a nationwide system of telecommunications relay services. The law requires that common carriers make annual contribu- tions based on their revenues to a federally administered fund supporting the provision of these services. Telecommunication relay service providers must connect relay calls initiated by users dialling 7-1-1. This requirement simplifies access to telecommunications relay services. The user does not have to remember the toll-free number for every state, but simply dials 7-1-1 and is automatically connected to the default provider in that state (140). Television decoders. The Television Decoder Circuitry Act (1990) requires television receivers with picture screens 13 inches (330 mm) or greater to contain built-in decoder circuitry to display closed captions. The Federal Communications Commission also applies this requirement to computers equipped with television circuitry sold with monitors with viewable pictures of at least 13 inches. The requirement of built-in decoder circuitry applies to digital television sets with a screen measuring 7.8 inches (198 mm) in height and to stand-alone digital television tuners and digital set-top boxes. The Act also requires closed-captioning services to be available as new video technology is developed. Source (140). that its web site was not accessible. In response, Agency rejected the complaint, because, while the Organizing Committee claimed it would it doesn’t comply with universal design princi- be excessively costly to make the required ples, a check-in clerk could also issue boarding improvements. Even so, the Organizing passes (102). Committee was found culpable by the Human Where enforcement mechanisms rely on Rights Equal Opportunities Commission and people with disabilities taking legal action, was fined. In Canada a complaint was filed this can be expensive and time-consuming against Air Canada because of its inaccessible and require considerable knowledge and con- ticketing kiosk. Although this was acknowl- fidence on the part of plaintiffs. Research is not edged to be a barrier, the Canadian Transport available to show how many cases are brought, 188 Chapter 6 Enabling Environments Box 6.7. DAISY (Digital Accessible Information SYstem) The DAISY consortium of talking-book libraries is part of the global transition from analogue to digital talking books. The aim of the consortium, launched in 1996, is to make all published information available – in an acces- sible, feature-rich, and navigable format – to people with print-reading disabilities. This should be done at the same time as, and at no greater cost than, for people who are not disabled. In 2005, for example, Harry Potter and the Half-Blood Prince was made available in DAISY format to visually impaired children on the day the story was originally published. The consortium also works in developing countries on building and improving libraries, training staff, producing software and content in local languages, and creating networks of organizations (141). It also seeks to influence international copyright laws and best practices to further the sharing of materials. DAISY collaborates with international standards organizations on standards that have the widest adoption around the world and that are open and non-proprietary. It develops tools that can produce usable content, and has intelligent reading systems. DAISY DTBOOK-XML, for instance, is a single-source document for the distribution of several formats such as hard-copy print book, EPUB e-text book, Braille book, talking book, and large-print book. AMIS (Adaptable Multimedia Information System), available in Afrikaans, Chinese, English, French, Icelandic, Norwegian, and Tamil, is a free, open-source, self-voicing system that can be downloaded from the DAISY site. In Sri Lanka the Daisy Lanka Foundation is creating 200 local-language and 500 English-language digital talking books, including school curriculum textbooks and university materials. The books, produced by sighted and blind students working in pairs, will be disseminated through schools for the blind and a postal library. This will allow access to a wider range of materials for the blind than currently available in Braille. Local-language talking books will also help those who are illiterate or have low vision. how many succeed, and how the process can be standards for ICT (127). Designers and manu- improved (126). facturers argue for voluntary standards, claim- Progress in achieving accessible ICT has ing that mandatory guidelines could restrict been slow despite legislation (see Box  6.6) innovation and competition. However, unless (103). As previously discussed, both top-down enshrined in legislation, there may be limited and bottom-up legislation is required. Other compliance with standards. approaches, such as financial incentives for the Certification for accessible ICT and development of accessible technologies and ser- labelling are possible supports to improving vices, might also be fruitful. Further research access. The United States Rehabilitation Act and information is needed on the types of leg- Amendments of 1998 require the Access Board islation and other measures that would be most to publish standards for information and com- appropriate to reach the various sectors and munication technology, including technical dimensions of information and communica- and functional performance criteria. Because tion access across different contexts is needed. of the size of the American market, effective regulation in the United States can drive acces- Standards sibility improvements in technologies, which are then reproduced worldwide (see Box 6.6). Article 9 of the CRPD calls for the develop- Different countries have achieved differ- ment of universal design and technical stand- ent levels of access, and not all technologies in ards. Guidelines and standards have generally developing countries have reached the access related to product safety, though ease of use has available elsewhere (97, 109, 110, 130, 132, 141, become more important. Standards organiza- 142). Web Content Accessibility Guidelines tions now take greater account of usability fac- (WCAG) 1.0 remains the standard in most tors and stakeholder involvement in developing countries, although there is a shift towards 189 World report on disability WCAG 2.0. Efforts are under way to harmonise and Portugal (138). In Thailand and Viet Nam standards – for example, between the United daily news programmes are broadcast with States Section 508 and WCAG 2.0 accessibility sign language interpretation or closed caption- requirements (143). ing. In India a weekly news programme broad- Two important developers of technical stand- casts in sign language. China, Japan, and the ards for accessible ICT products and services are Philippines encourage broadcasters to provide the W3C Web Accessibility Initiative (144, 145) such programming (39). Elsewhere: and the DAISY Consortium (146) (see Box 6.7). ■ In Colombia public service television is obliged to include closed captioning, sub- Policy and programmes titles, or sign language. ■ In Mexico there exists a requirement for Government telecommunications policies in captioning. several countries have improved in recent years, ■ In Australia, where there are captioning especially for landline phones. Where sectoral requirements for both analogue and digital policies exist cross-cutting coordination may television, the target for captioning on prime be indicated (124). Horizontal approaches may time television is 70% of all programmes be able to address the barriers inherent in a sec- broadcast between 18:00 and midnight. toral approach. Policies on ICT accessibility in Australia, Canada, and the United States have set Further progress is possible as illustrated standards for other countries (28, 147). Sweden by Japan (Ministry of Internal Affairs and uses universal service obligations to ensure that Communications) having set a target of cap- telecommunications operators provide special tioning 100% of programmes where captioning services for people with disabilities. The Swedish is technically possible, for both live and pre- National Post and Telecom Agency also offers produced programmes, by 2017. speech support for people with speech and lan- Several countries have initiatives to improve guage difficulties and discussion groups for deaf- ICT accessibility such as: blind people (148). ■ Sri Lanka has several ICT accessibility While access to television is a fundamental projects, including improving payphone problem for people who are deaf or blind, fea- access for people with disabilities (110). tures to enable access exist (110). Some of these ■ In Japan the Ministry of Internal features require technological improvements to Affairs and Communications (known equipment – for example enabling closed cap- until 2004 as the Ministry of Public tioning. Other features require policy decisions Management, Home Affairs, Posts and by broadcasters – for example, providing sign Telecommunications) has set up a system language interpretation for news programmes to evaluate and correct access problems on or other broadcasts (17, 138). Video services web sites. The ministry also helps other with audio descriptions can make the visual government organizations make web sites images of media available to those who are more accessible for people with disabili- blind or who have low vision. Emergency alerts ties including older persons. can be communicated by sound and caption. ■ South Africa has a National Accessibility Radio programming is particularly helpful for Portal that can handle many languages. people who are visually impaired. The portal is accessed by computers in Public sector channels are often more service centres with accessible equip- easily regulated or persuaded to offer accessible ment and through a telephone interface broadcasts (149). In Europe news programmes (142, 150). The portal serves as a one-stop with sign language interpretation are provided shop for information, services and com- in countries including Ireland, Italy, Finland, munications for people with disabilities, 190 Chapter 6 Enabling Environments caregivers, the medical profession, and Access innovations in mobile telephony others providing services in the field of include: disability. ■ Hand-held devices, using mobile phones as platforms, can deliver a range of services, Procurement including (156): – aids for finding the way for blind people Procurement policies in the public sector can – route guidance for people with motor also promote ICT accessibility (109, 142). Some disabilities governments have comprehensive legislation – video sign-language communication on ICT accessibility, including procurement for deaf people policies requiring accessible equipment, such as – memory aids for older users and people Section 508 of the United States Rehabilitation with cognitive disabilities. Act (140, 147, 151). Government procurement ■ The “VoiceOver”, a screen reader that “speaks” policies can create incentives for the industry whatever appears on the display of the to adopt technical standards for universally “iPhone” mobile device, lets visually impaired designed technology (35, 97, 132, 134, 152, 153). users make calls, read e-mail, browse web The European Parliament and other bodies pages, play music, and run applications (157). within the European Union have passed reso- ■ The cognitive accessibility of mobile phones lutions on web accessibility and are harmo- can be increased for people with intellec- nizing public procurement policies (124). The tual impairments (158). A special phone European Union included ICT accessibility in has been designed for those who find the its European Action Plan, which also covered ordinary mobile device too complicated, investment in the research and development with a large back-lit keyboard and simple of accessible ICT and suggested strengthening menus and access options (159). the provisions on accessibility (151). Tools are ■ In Australia the mobile telephone industry available for promoting accessible procure- has launched a global information service for ment, for example the Canadian Accessible reporting the accessibility features of mobile Procurement Toolkit (154) and the United phones (160). Australia and the United States Buy Accessible Wizard (155). States also require that accessible informa- tion be provided with telecom equipment. Universal design ■ Deaf people often use SMS (texting on mobile telephones) for face-to-face as well Different people with disabilities prefer differ- as long distance communication (161). ent solutions to access barriers, and choice is a ■ In Japan the Raku Raku phone has been key principle in developing accessibility (102). universally designed, with a large screen, Accessible telephone handsets for landline dedicated buttons, read aloud menus, voice phones are increasingly available. In developed input text messages, and an integrated countries telecommunications suppliers offer DAISY player. More than 8 million have telephone equipment with features including: been sold, particularly for the ageing popu- volume control, a voice-aid facility, large but- lation, previously an untapped market for tons, and visual signal alerts; a range of tel- mobile phone manufacturers (162). etypewriters, including a Braille teletypewriter and one with a large visual display; and adap- Disabled people’s organizations have called tors for cochlear implant users. for universal design in computers and the web – a proactive rather than reactive approach to accessible technology (163). For example, 191 World report on disability screen-reader users often do not like the offer A United Kingdom grocery supplier with an of a “text only” version of web sites, because online service has produced an accessible site they are less commonly updated: it is prefer- in close consultation with the Royal National able to make the graphic version accessible Institute of Blind People and a panel of visually (164). Raising the Floor proposes a radical new impaired shoppers (171). The site offers an alter- approach: building alternative interface fea- native to the high-graphic content of the main- tures and services directly into the Internet, so stream version of the site. Originally designed that any users who need accessibility features for visually-impaired users, the site attracts a can invoke the exact features they need on any much wider audience – with many fully sighted computer they encounter, anywhere, anytime people finding the accessible site easier to use (165). Accessibility features in such operating than other sites. Spending through the site is systems as Microsoft Windows and Mac OS X £13 million a year, almost 400 times the origi- already offer basic screen reading facilities, but nal cost of £35 000 to develop the accessible site. awareness of those features is sometimes low. And as a result of the access improvements, the Guidelines for designers and operators of site, at no extra cost, will be easy to use with web sites on how to deliver accessible content personal digital assistants, web TV, and pocket to hand-held mobile devices are also being pro- computers with low-speed connections and duced by W3C (166). limited screen sizes. Recent research on barriers to inclusive Action by industry design in communications equipment, prod- ucts, and services – and on ways to address these There is a strong business case for removing bar- barriers – suggests areas for improvement (172): riers and promoting usability (167). This requires ■ procurement processes that require tender- focusing on “pull” factors, rather than the “push” ers to consider accessibility and usability; factor of regulation, as well as challenging myths ■ better communication with stakeholders; that accessibility is complex, uncool, expensive, ■ marketing of accessible products and ser- and for the few (168). Accessibility can offer vices as an ethical choice; market benefits, particularly with an ageing ■ wider access to information and mecha- population. Accessible web sites and services nisms for sharing knowledge about the can be easier for all customers to use – hence, needs of older and disabled people. the term “electronic curb cuts” (167). By the end of 2008 the number of mobile Removing operational barriers can also phone subscribers reached 4 billion (169). In enable companies to benefit from the exper- Africa, for example, the number of mobile tise of disabled workers. For example, major telephone users increased from 54 million to corporations have led the way in ensuring that almost 350 million between 2003 and 2008 – employees can access assistive technologies far in excess of the number of landline users and promote ICT accessibility. One company (169). One of the largest mobile providers in achieved a 40% reduction in bandwidth costs China is offering a special SIM card to users after introducing an accessible intranet solu- with disabilities. The discounted monthly fee of tion. Getting disabled access right can enhance the service and the low charge for text messages reputation, as well as potentially saving costs or makes it affordable for hard-of-hearing or deaf improving sales (143). users. Card users can recharge their account by sending a text message. The company also has an audio version of its news service that allows people with visual impairment to listen to news reports (170). 192 Chapter 6 Enabling Environments Role of nongovernmental Conclusion and organizations recommendations Disabled people’s organizations have cam- Environments can either disable people with paigned for better access to ICT, based on a health problems or foster their participation rights-based approach (102). This has included and inclusion in social, economic, political, advocating for more regulation, trying to and cultural life. Improving access to buildings influence manufacturers and service providers and roads, transportation, and information and to ensure access, and resorting to legal chal- communication can create an enabling environ- lenges in cases of non-compliance (127). Active ment which benefits not only disabled people but involvement in nongovernmental organiza- many other population groups as well. Negative tions in oversight and enforcement has been attitudes are a key environmental factor which identified as helpful in improving access (124). needs to be addressed across all domains. Whether through organizations or as This chapter argues that the prerequisites individuals, people with disabilities should for progress in accessibility are: creation of a be involved in the design, development, and “culture of accessibility;” effective enforcement implementation of ICTs (102). These steps would of laws and regulations; and better information reduce costs and widen markets by ensuring that on environments and their accessibility. To suc- more people can use ICTs from the start (126). ceed, accessibility initiatives need to take into Nongovernmental organizations can also account affordability, availability of technology, undertake programmes to help persons with knowledge, cultural differences, and the level disabilities access to ICT – including offering of development. Solutions that work in tech- related training to ensure digital literacy and nologically sophisticated environments may skills. For example, the New Delhi branch of be ineffective in low-resource settings. The best the Indian National Association for the Blind strategy for achieving accessibility is usually established a computer training and technology incremental improvement. Initial efforts should centre with accessible and affordable ICT for focus on removing basic environmental barri- blind people and has been running initial and ers. Once the concept of accessibility has become update courses for free since 1993. Courseware ingrained, and as more resources become avail- was developed in Braille, audio, large-print, and able, it becomes easier to raise standards and electronic-text formats to cater to people with attain a higher level of universal design. visual impairment. Projects included devel- Making progress in accessibility requires oping Braille transcription software, search engagement of international and national engines, and text-to-speech software in Hindi. actors, including international organizations, Visually impaired students became trainees at national governments, technology and prod- the computer company sponsoring the centre. ucts designers and producers, and persons This model of training is being used in other with disabilities and their organizations. The countries. In Ethiopia the Adaptive Technology following recommendations highlight specific Center for the Blind, with support from United measures that can improve accessibility. Nations Educational, Scientific and Cultural Organization (UNESCO), created a computer Across domains of the environment training centre for people who are blind or visu- ally impaired to gain skills in the use of ICT and ■ Accessibility policies and standards should improve their employment opportunities (173). meet the needs of all people with disabilities. ■ Monitor and evaluate the implementa- tion of accessibility laws and standards. 193 World report on disability An impartial monitoring body, prefer- ■ Persons with disabilities and their organi- ably outside government, and with a sig- zations should be involved in accessibility nificant membership of disabled people, efforts – for example, in the design and could be designated and funded to track development of policies, products and ser- progress on accessibility and recommend vices to assess the need of users, but also for improvements. monitoring progress and responsiveness. ■ Awareness-raising is needed to challenge ignorance and prejudice surrounding dis- Public accommodations ability. Personnel working in public and – building and roads private services should be trained to treat disabled customers and clients on an equal ■ Adopt universal design as the conceptual basis and with respect. approach for the design of buildings and ■ Professional bodies and educational insti- roads that serve the public. tutions can introduce accessibility as a ■ Develop and mandate minimum national component in training curricula in archi- standards. Full compliance should be required tecture, construction, design, informatics, for new construction of building and roads that marketing, and other relevant profession- serve the public. This comprises features such als. Policy-makers and those working on as ramps (curb cuts) and accessible entries; behalf of people with disabilities need to be safe crossings across the street; an accessible educated about the importance and public path of travel to all spaces and access to public benefits of accessibility. amenities, such as toilets. Making older build- ■ International organizations can play an ings accessible requires flexibility. important role by: ■ Enforce laws and regulations by using design – Developing and promoting global reviews and inspections; participatory accessibility standards for each domain accessibility audits; and by designating a lead of the physical environment that are government agency responsible for imple- widely relevant, taking into account menting laws, regulations, and standards. constraints such as cost, heritage, and ■ For developing countries a strategic plan cultural diversity. with priorities and a series of increas- – Funding development projects that ing goals can make the most of limited comply with relevant accessibility stand- resources. Policy and standards should be ards and promote universal design. flexible to account for differences between – Supporting research to develop an rural and urban areas. evidence-based set of policies and good practices in accessibility and Transportation universal design, with particular emphasis on solutions appropriate in ■ Introduce accessible transportation as part low-income settings. of the overall legislation on disability rights. – Developing indices on accessibility ■ Identify strategies to improve the accessi- and reliable methods of data collec- bility of public transport, including: tion to measure progress in improv- – Applying universal design principles ing accessibility. in the design and operation of public ■ Industry can make important contribu- transport, for example in the selection tions by promoting accessibility and uni- of new buses and trams or by remov- versal design in the early stages of the ing physical barriers when renovating design and development of products, pro- stops and stations. grammes, and services. 194 Chapter 6 Enabling Environments – Requiring transportation agencies, in interior, and exterior handrails at entrances the short-term, to provide STS such as to buses, priority seating, improved lighting, shared vans or accessible taxis. raised paved loading pads where there are no – Making public transport systems more pavements, and the removal of turnstiles. flexible for the user by optimizing the use of information technology. Accessible information – Make provisions for alternative forms and communication of transport such as tricycles, wheel- chairs, bicycles, and scooters by pro- ■ Consider a range of bottom-up and top- viding separate lanes and paths. down legislative and policy mechanisms ■ Establish continuity of accessibility including: consumer protection, non-dis- throughout the travel chain by improving crimination legislation covering informa- the quality of pavements and roads, pedes- tion and communication technologies and trian access, installing ramps (curb cuts), direct obligations on those developing ICT and ensuring access to vehicles. systems, products, and services. ■ To improve affordability of transport, sub- ■ In the public and private sector adopt poli- sidize transport fares for people with disa- cies on procurement which take into con- bilities who may not be able to afford them. sideration accessibility criteria. ■ Educate and train all parties involved in ■ Support the development of telephone transportation: managers need to under- relay, sign language, and Braille services. stand their responsibilities and front-line ■ When designing and distributing ICT staff need to ensure customer care. 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Beijing, China Mobile, 2008 (http://www.chinamobile. com/en/mainland/media/press080910_01.html, accessed 30 January 2010). 171. Employers Forum on Disability. Realising Potential [web site]. (www.realising-potential.org/case-studies/industry/e- commerce.html, accessed 12 April 2011). 172. Access and inclusion: digital communications for all. London, Ofcom, 2009. (http://stakeholders.ofcom.org.uk/binaries/ consultations/access/summary/access_inc.pdf, accessed 30 January 2010). 173. Adaptive Technology Center for the Blind [web site]. (www3.sympatico.ca/tamru/, accessed, accessed 30 January 2010). Chapter 7 “I joined a mainstream school near my house for easy access. Although I could go to school on my wheelchair and could go back home with ease if any need arose, there was not any type of accessibility within the school. There were stairs everywhere and no access to classes by any other means. The best thing that could be done was to place my classroom on first floor which meant that I had 15 steps to conquer to get into or out of my class. This was usually done by having two people carry me up and down everyday. To make things really worse there were no accessible toilets. This meant that I either had not to use the toilet the whole day or go back home and lose my classes for the day.” Heba “I am 10 years old. I go to a regular school; I am in the 4th grade. We have a wonder- ful teacher, and she does everything to make me feel comfortable. I use a wheelchair to get around and have a special desk and a special wheelchair at school. When there was no eleva- tor in the school, my mother helped me to go up the stairs. Now there is an elevator, and I can go up by myself and I like it a lot. We also have a teacher who uses a wheelchair, just like me.” Olga “[Being in an inclusive school] makes us learn how we can help each other and also understand that education is for everybody. In my former school both pupils and teach- ers used to laugh at me when I failed to say something, since I couldn’t pronounce words properly and they wouldn’t let me talk. But in this school if students laugh at me, teachers stop them and they ask forgiveness.” Pauline “I did not have formal education. There just wasn’t facilities. It didn’t make me feel good. But I can’t do much about that now. I just stayed at home. I was more or les self taught. I can read and articulate myself quite well. But the opportunities I would have wanted never occurred, so I was only able to reach a certain level, I could not get any further. Ideally I would have gone to university, studied history.” James “By the time I reached Standard 6, I’d lost almost all of my sight. My dad didn’t want me to go to school once I was completely blind – I think he was afraid for me – but an NGO convinced him to let me continue. After I graduated primary school my father was happy for me to continue on to high school. The NGO provided the funding for my four years of high school and they helped me with my cane, a Brailler, books, computer… things like that…” Richard “I want to go to school because I want to learn, and I want to be educated, and I want to define my life, to be independent, to be strong, and also to live my life and be happy.” Mia 7 Education Estimates for the number of children (0–14 years) living with disabilities range between 93 million (1, 2) and 150 million (3). Many children and adults with disabilities have historically been excluded from mainstream education opportunities. In most countries early efforts at providing education or train- ing were generally through separate special schools, usually targeting specific impairments, such as schools for the blind. These institutions reached only a small proportion of those in need and were not cost-effective: usually in urban areas, they tended to isolate individuals from their families and com- munities (4). The situation began to change only when legislation started to require including children with disabilities in educational systems (5). Ensuring that children with disabilities receive good quality education in an inclusive environment should be a priority of all countries. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) rec- ognizes the right of all children with disabilities both to be included in the general education systems and to receive the individual support they require (see Box 7.1). Systemic change to remove barriers and provide reasonable accommodation and support services is required to ensure that children with disabilities are not excluded from mainstream educational opportunities. The inclusion of children and adults with disabilities in education is important for four main reasons. ■ Education contributes to human capital formation and is thus a key determinant of personal well-being and welfare. ■ Excluding children with disabilities from educational and employment opportunities has high social and economic costs. For example, adults with disabilities tend to be poorer than those without disabilities, but education weakens this association (8). ■ Countries cannot achieve Education for All or the Millennium Development Goal of universal completion of primary education with- out ensuring access to education for children with disabilities (9). ■ Countries that are signatories to the CRPD cannot fulfil their responsi- bilities under Article 24 (see Box 7.1). For children with disabilities, as for all children, education is vital in itself but also instrumental for participating in employment and other areas of social activity. In some cultures, attending school is part of becoming a complete person. Social relations can change the status of people with 205 World report on disability Box 7.1. The rights and frameworks The human right of all people to education was first defined in the United Nations’ Universal Declaration of Human Rights of 1948 and further elaborated in a range of international conventions, including the Convention on the Rights of the Child and more recently in the CRPD. In 1994 the World Conference on Special Needs Education in Salamanca, Spain produced a statement and frame- work for action The Salamanca Declaration encouraged governments to design education systems that respond to diverse needs so that all students can have access to regular schools that accommodate them in child-centred pedagogy (5). The Education for All Movement is a global movement to provide quality basic education for all children, youth and adults (6). Governments around the world have made a commitment to achieve, by 2015, the six EFA goals: expand early childhood care and education; provide free and compulsory education for all; promote learning and life skills for young people and adults; increase adult literacy by 50%; achieve gender parity by 2005, gender equality by 2015; and improve the quality of education (6). In Article 24 the CRPD stresses the need for governments to ensure equal access to an “inclusive education system at all levels” and provide reasonable accommodation and individual support services to persons with disabilities to facilitate their education (7). The Millennium Development Goal of universal primary completion stresses attracting children to school and ensur- ing their ability to thrive in a learning environment that allows every child to develop to the best of their abilities. disabilities in society and affirm their rights other characteristics – such as gender, rural (10). For children who are not disabled, con- residence, and low economic status (8). tact with children with a disability in an inclu- Respondents with disability in the World sive setting can, over the longer term, increase Health Survey experience significantly lower familiarity and reduce prejudice. Inclusive edu- rates of primary school completion and fewer cation is thus central in promoting inclusive mean years of education than respondents with- and equitable societies. out disability (see Table 7.1). For all 51 countries The focus of this chapter is on the inclu- in the analysis, 50.6% of males with disability sion of learners with disabilities in the con- have completed primary school, compared with text of quality Education for All – a global 61.3% of males without disability. Females with movement that aims to meet the learning disability report 41.7% primary school comple- needs of all children, youth, and adults by tion compared with 52.9% of females without 2015 and on the systemic and institutional disability. Mean years of education are similarly transformation needed to facilitate inclusive lower for persons with disability compared with education. persons without disability (males: 5.96 versus 7.03 years respectively; females: 4.98 versus 6.26 years respectively). In addition, education com- Educational participation pletion gaps are found across all age groups and and children with disability are statistically significant for both sub-samples of low-income and high-income countries. In general, children with disabilities are less Turning to country-specific examples, likely to start school and have lower rates of evidence shows young people with disabilities staying and being promoted in school (8, 11). are less likely to be in school than their peers The correlations for both children and adults without disabilities (8). This pattern is more between low educational outcomes and having pronounced in poorer countries (9). The gap in a disability is often stronger than the correla- primary school attendance rates between disa- tions between low educational outcome and bled and non-disabled children ranges from 206 Chapter 7 Education Table 7.1. Education outcomes for disabled and not disabled respondents Individuals Low-income countries High-income countries All countries Not Disabled Not Disabled Not Disabled disabled disabled disabled Male Primary school completion 55.6% 45.6%* 72.3% 61.7%* 61.3% 50.6%* Mean years of education 6.43 5.63* 8.04 6.60* 7.03 5.96* Female Primary school completion 42.0% 32.9%* 72.0% 59.3%* 52.9% 41.7%* Mean years of education 5.14 4.17* 7.82 6.39* 6.26 4.98* 18–49 Primary school completion 60.3% 47.8%* 83.1% 69.0%* 67.4% 53.2%* Mean years of education 7.05 5.67* 9.37 7.59* 7.86 6.23* 50–59 Primary school completion 44.3% 30.8%* 68.1% 52.0%* 52.7% 37.6%* Mean years of education 5.53 4.22* 7.79 5.96* 6.46 4.91* 60 and over Primary school completion 30.7% 21.2%* 53.6% 46.5%* 40.6% 32.3%*   Mean years of education 3.76 3.21 5.36 4.60* 4.58 3.89* Note: Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise) and age-standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (12). 10% in India to 60% in Indonesia, and for sec- primary and secondary schools, with another ondary education, from 15% in Cambodia to 9 in a private secondary school (18). 58% in Indonesia (see Fig. 7.1). Household data In India a survey estimated the share of disa- in Malawi, Namibia, Zambia, and Zimbabwe bled children not enrolled in school at more than show that between 9% and 18% of children of five times the national rate, even in the more pros- age 5  years or older without a disability had perous states. In Karnataka, the best performing never attended school, but between 24% and major state, almost one quarter of children with 39% of children with a disability had never disabilities were out of school, and in poorer such attended (13–16). states as Madhya Pradesh and Assam, more than Enrolment rates also differ according to half (11). While the best-performing districts in impairment type, with children with physical India had high enrolment rates for children with- impairment generally faring better than those out disabilities – close to or above 90%, school with intellectual or sensory impairments. attendance rates of children with disabilities never For example in Burkina Faso in 2006 only exceeded 74% in urban areas or 66% in rural. Most 10% of deaf 7- to 12-year olds were in school, special education facilities are in urban areas (19, whereas 40% of children with physical impair- 20), so the participation of children with disabili- ment attended, only slightly lower than the ties in rural areas could be much worse than the attendance rate of non-disabled children (17). aggregated data imply (19, 21). In Rwanda only 300 of an estimated 10  000 Partly as a result of building rural schools deaf children in the country were enrolled in and eliminating tuition fees, Ethiopia nearly 207 World report on disability Fig. 7.1. Proportion of children aged 6–11 years and 12–17 years with and without a disability who are in school Children aged 6–11 years 100 Proportion attending school (%) 80 60 40 20 0 The Burundi Cambodia Chad Colombia India Indonesia Jamaica Mongolia Mozambique Romania South Africa Zambia Plurinational State of Bolivia Not disabled Disabled Children aged 12–17 years 100 Proportion attending school (%) 80 60 40 20 0 The Burundi Cambodia Chad Colombia India Indonesia Jamaica Mongolia Mozambique Romania South Africa Zambia Plurinational State of Bolivia Source (8). doubled its net enrolment ratio, from 34% in years were 81% in Bulgaria, 58% in the Republic 1999 to 71% in 2007 (22). But there are no reli- of Moldova, and 59% in Romania, while those able data on the inclusion or exclusion of disad- of children not disabled were 96%, 97%, and vantaged groups in education (23). A national 93%, respectively (26). Fig. 7.2 confirms the siz- baseline survey in 1995 estimated the number able enrolment gap for disabled young people of children with disabilities of school age at between the ages of 16 and 18 years in selected around 690 000 (24). According to Ministry of countries of eastern Europe. Education data, there were 2276 children with So, despite improvements in recent dec- disabilities in 1997 – or just 0.3% of the total – ades, children and youth with disabilities are attending 7 special boarding schools, 8 special less likely to start school or attend school than day schools and 42 special classes. Ten years other children. They also have lower transition later there were still only 15 special schools, but rates to higher levels of education. A lack of edu- the number of special classes attached to regular cation at an early age has a significant impact government schools had increased to 285 (25). on poverty in adulthood. In Bangladesh the Even in countries with high primary cost of disability due to forgone income from school enrolment rates, such as those in eastern a lack of schooling and employment, both of Europe, many children with disabilities do not people with disabilities and their caregivers, is attend school. In 2002 the enrolment rates of estimated at US$ 1.2 billion annually, or 1.7% disabled children between the ages of 7 and 15 of gross domestic product (27). 208 Chapter 7 Education Understanding education Fig. 7.2. School enrolment rates of children and disability aged 16–18 years in selected European countries What counts as disability or special educational need and how these relate to difficulties chil- 100 dren experience in learning is a much debated Disabled Not disabled topic for policy-makers, researchers, and the 80 Proportion of children enrolled (%) wider community (28). Data on children with disabilities who have 60 special education needs are hampered by dif- ferences in definitions, classifications, and cat- 40 egorizations (29, 30). Definitions and methods for measuring disability vary across countries 20 based on assumptions about human difference and disability and the importance given to the different aspects of disability – impairments, 0 Bulgaria Georgia Romania Republic of activity limitations and participation restric- Moldova tion, related health condition, and environ- Source (26). mental factors (see Chapter  2). The purpose and underlying intentions of classification of learners will have a special educational need systems and related categorization are multiple at some point in their school career (33). This including: identification; determining eligibil- chapter focuses on the education of learners ity; administrative; and guiding and monitor- with disabilities, rather than on those covered ing interventions (29, 30). Many countries are in the broader definition of special needs. But moving away from medically-based models of not every person with a disability necessarily identification of health condition and impair- has a special educational need. ments, which located the difference in the indi- The broad sense of inclusion is that the vidual, towards interactional approaches within education of all children, including those with education, which take into consideration the disabilities, should be under the responsibility environment, consistent with the International of the education ministries or their equivalent, Classification of Functioning, Disability and with common rules and procedures. In this Health (ICF) (28, 29). model education may take place in a range of There are no universally agreed definitions settings – such as special schools and centres, for such concepts as special needs education special classes in integrated schools or regular and inclusive education, which hampers com- classes in mainstream schools – following the parison of data. principle of “the least restrictive environment”. The category covered by the terms special This interpretation assumes that all children needs education, special educational needs, can be educated and that regardless of the set- and special education is broader than edu- ting or adaptations required, all students should cation of children with disabilities, because have access to a curriculum that is relevant and it includes children with other needs – for produces meaningful outcomes. example, through disadvantages resulting A stricter sense of inclusion is that all chil- from gender, ethnicity, poverty, war trauma, dren with disabilities should be educated in or orphanhood (8, 31, 32). The Organization regular classrooms with age-appropriate peers. for Economic Co-operation and Development This approach stresses the need for the whole (OECD) estimates that between 15% and 20% school system to change. Inclusive education 209 World report on disability entails identifying and removing barriers and exceptions (31). In developing countries the providing reasonable accommodation, ena- move towards inclusive schools is just starting. bling every learner to participate and achieve The inclusion of children with disabili- within mainstream settings. ties in regular schools – inclusive schools – is Policy-makers need increasingly to dem- widely regarded as desirable for equality and onstrate how policies and practice lead to human rights. The United Nations Educational, greater inclusion of children with disability and Scientific and Cultural Organization (UNESCO) improved educational outcomes. Current statis- has put forward the following reasons for devel- tical data collected on the numbers of disabled oping a more inclusive education system (35). pupils with special educational needs by set- ■ Educational. The requirement for inclusive ting provide some indications on the situation schools to educate all children together in countries and can be useful for monitoring means that the schools have to develop trends in provision of inclusive education – if ways of teaching that respond to individual there is a clear understanding of which groups differences, to the benefit of all children. of pupils are included in data collection (28). ■ Social. Inclusive schools can change atti- Data and information useful in informing and tudes towards those who are in some shaping policy would focus more on the qual- way “different” by educating all children ity, suitability, or appropriateness of the edu- together. This will help in creating a just cation provided (28). Systematic collection of society without discrimination. qualitative and quantitative data, which can be ■ Economic. Establishing and maintaining used longitudinally, is required for countries to schools that educate all children together map their progress and compare relative devel- is likely to be less costly than setting up a opments across countries (28). complex system of different types of schools specializing in different groups of children. Approaches to educating children with disabilities Inclusive education seeks to enable schools to serve all children in their communities (36). There are different approaches around the In practice, however, it is difficult to ensure world to providing education for people with the full inclusion of all children with dis- disabilities. The models adopted include special abilities, even though this is the ultimate goal. schools and institutions, integrated schools, Countries vary widely in the numbers of chil- and inclusive schools. dren with disabilities who receive education Across European countries 2.3% of pupils in either mainstream or segregated settings, within compulsory schooling are educated in and no country has a fully inclusive system. A a segregated setting – either a special school flexible approach to placement is important: or a separate class in a mainstream school (see in the United States of America, for example, Fig. 7.3). Belgium and Germany rely heavily on the system aims to place children in the most special schools in which children with special integrated setting possible, while providing for needs are separated from their peers. Cyprus, more specialized placement where this is con- Lithuania, Malta, Norway, and Portugal appear sidered necessary (37). Educational needs must to include the majority of their students in regu- be assessed from the perspective of what is best lar classes with their same-age peers. A review for the individual (38) and the available finan- of other OECD countries shows similar trends, cial and human resources within the country with a general movement in developed countries context. Some disability advocates have made towards inclusive education, though with some the case that it should be a matter of individual 210 Chapter 7 Education Fig. 7.3. Delivery of education by type of model for selected European countries Note: The data refer to pupils who have been officially identified as having SEN. However, many more pupils may receive support for their special educational needs but they are not “counted”. The only comparable data is the percentage of pupils who are educated in segregated settings. The European Agency for Development in Special Needs Education has an operational definition for segrega- tion: “education where the pupil with special needs follows education in separate special classes or special schools for the largest part (80% or more) of the school day”, which most countries agree upon and use in data collection. Denmark: data only collected for pupils with exten- sive support needs who are generally educated in segregated settings; up to 23 500 receive support in the mainstream schools. Finland: data do not include 126 288 learners with minor learning difficulties (e.g. dyslexia) who receive part-time special needs education in the mainstream schools. Ireland: no data available for pupils with SEN in mainstream sec- ondary schools. Germany and the Netherlands: no data available on numbers of pupils in special classes in mainstream schools. Hungary, Luxembourg and Spain: “special schools” includes special classes in mainstream schools. Poland: special classes in main- stream schools do not exist. Sweden, Switzerland: data indicate that pupils are educated in segregated settings, however data are not collected on those who receive support in inclusive settings. Source (28, 34). choice whether mainstream or segregated set- meaningful interaction with classmates and tings meet the needs of the child (39, 40). professionals, would exclude the Deaf learner Deaf students and those with intellec- from education and society. tual impairments argue that mainstreaming is not always a positive experience (41, 42). Outcomes Supporters of special schools – such as schools for the blind, deaf, or deafblind – particularly The evidence on the impact of setting on edu- in low-income countries, often point to the fact cation outcomes for persons with disabilities is that these institutions provide high-quality not conclusive. A review of studies on inclusion and specialized learning environments. The published before 1995 concluded that the studies World Federation of the Deaf argues that often were diverse and not of uniformly good quality the best environment for academic and social (43). While placement was not the critical factor development for a Deaf child is a school where in student outcomes, the review found: both students and teachers use sign language ■ slightly better academic outcomes for stu- for all communication. The thinking is that dents with learning disabilities placed in simple placement in a regular school, without special education settings; 211 World report on disability ■ higher dropout rates for students with about the impact of inclusion of children with emotional disturbances who were placed emotional and behavioural difficulties were in general education; more often expressed by teachers (53). ■ better social outcomes for students with But where class sizes are large and inclusion severe intellectual impairments who were is not well resourced, the outcomes can be diffi- taught in general education classes. cult for all parties. There will be poor outcomes for children with disabilities in a general class While children with hearing impairments if the classroom and teacher cannot provide the gained some academic advantage in mainstream support necessary for their learning, develop- education, their sense of self suffered. In general, ment, and participation. Their education will students with mild intellectual impairments tend to end when they finish primary school, appeared to receive the most benefit from place- as confirmed by the low rates of progression ment in supportive general education classes. to higher levels of education (55). In Uganda, A review of research from the United States when universal primary education was first on special needs education concluded that the introduced, there was a large influx of previ- impact of the educational setting – whether ously excluded groups of children, including special schools, special classes, or inclusive those with disabilities. With few additional education – on educational outcomes could not resources schools were overwhelmed, report- be definitely established (44). It found that: ing problems with discipline, performance, and ■ most of the studies reviewed were not of drop-out rates among students (56). good quality methodologically, and depend- A proper comparison of learning outcomes ent measures varied widely across studies; between special schools and the inclusion of ■ the researchers often had difficulty separat- children with disabilities in mainstream schools ing educational settings from the types and has not been widely carried out, beyond the few intensity of services; smaller studies already mentioned. In developing ■ the research was frequently conducted countries, almost no research comparing out- before critical policy changes took place; comes has been conducted. There is thus a need ■ much of the research focused on how to for better research and more evidence on social implement inclusive practices, not on and academic outcomes. Box  7.2 presents data their effectiveness. from a longitudinal study in the United States on the educational and employment outcomes There are some indications that the acquisi- of different groups of students with disabilities. tion of communication, social, and behavioural skills is superior in inclusive classes or schools. Several researchers have documented such pos- Barriers to education for itive outcomes (45–48). A meta-analysis of the children with disabilities impact of setting on learning found a “small- to-moderate beneficial effect of inclusive edu- Many barriers may hinder children with dis- cation on the academic and social outcomes of abilities from attending school (59–61). In this special needs students” (49). A small number chapter they are categorized under systemic of studies have confirmed the negative impact and school-based problems. of placement in regular education where indi- vidualized supports are not provided (50, 51). System-wide problems The inclusion of students with disabilities is generally not considered to have a negative Divided ministerial responsibility impact on the educational performance of stu- In some countries education for some or all dents without disabilities (52–54). Concerns children with disabilities falls under separate 212 Chapter 7 Education Box 7.2. Transition from school to work in the United States All secondary education students with documented disabilities in the United States are protected by Section 504 of the Vocational Rehabilitation Act and the American Disabilities Act. A subgroup of students with disabilities also meets the eligibility requirements under Part B of the Individuals with Disabilities Education Act (IDEA). In the former category are students whose disability does not adversely affect their ability to learn, and who can progress through school with reasonable accommodations that enable them to have access to the same resources and learning as their peers. The students eligible under Part B of the IDEA are entitled to a “free and appropriate public education”, which is defined through their individualized education plan. This case study refers to students with such a plan. The National Longitudinal Transition Study 2 (NLTS2) provides data about students with disabilities covered by IDEA. The NLTS2 was launched after a nationally representative survey in 2000 of a sample of 11 272 students aged 13–16 years who were receiving special education. Of this sample of disabled students, 35% were living in disadvantaged households with annual incomes of US$ 25 000 or less. In addition, 25% were living in single- parent households. Of all sample students, 93.9% were attending regular secondary schools in 2000, 2.6% were attending special schools, and the remainder attending alternative, vocational, or other schools. Graduation rates The following figure shows the proportion of students aged 14–21 years who finished high school and the proportion who dropped out, over 10 years. Proportion of exiting students with disabilities, aged 14–21 years, who graduated, received a certificate, or dropped out, 1996–2005 1.0 Proportion of students (%) 0.8 0.6 0.4 0.2 0 1996–97 1997–98 1998–99 1999–00 2000–01 2001–02 2002–03 2003–04 2004–05 2005–06 Graduated with a diploma Received certificate Dropped out Source (57). Post-school outcomes According to NLTS2, 85% of young people with disabilities were engaged in employment, post-secondary edu- cation, or job training in the four years since leaving school. Of the sample students, 45% had enrolled in some type of post-secondary education, compared with 53% of students in the general population. Among those in post-secondary education, 6% had enrolled in business, vocational, or technical schools, 13% in a two-year college course, and 8% in a four-year college or university. Of young people within the same age ranges in the general population, 12% were enrolled in two-year colleges and 29% in four-year institutions (58). About 57% of the young people with disabilities aged 17–21 years were employed at the time of the 2005 follow- up, compared with the 66% among the same age group in the general population. Young people with intellectual impairments or multiple impairments were the least likely to be engaged in school, work, or preparation for work. continues ... 213 World report on disability ... continued Young people with learning, cognitive, behavioural, or emotional impairments were 4–5 times more likely to have been involved with the criminal justice system than young people in the general population. Young people with intellectual impairments were the least likely to have graduated with a diploma and had the lowest employment rates among all disability categories. Dropouts were far less likely to be engaged in post-school work or education and 10 times more likely than students with disabilities who finished high school to have been arrested. Of the students with visual or hearing impairments, more than 90% received a regular diploma and were twice as likely as other students with a disability to have enrolled in some type of post-secondary school. For some students, such as those with emotional disturbances, the educational outcomes are disturbingly low. Research is required to find forms of curricula, pedagogies, and assessment methods that take better account of students’ diverse needs within education and in the transition to work. ministries such as Health, Social Welfare, or Social services for children with disabilities and their Protection (El Salvador, Pakistan, Bangladesh) families (63). or distinct Ministries of Special Education. In A review of 28 countries participating other countries (Ethiopia and Rwanda) respon- in the Education for All Fast Track Initiative sibilities for the education for disabled children Partnership found that 10 had a policy commit- are shared between ministries (25). ment to include children with disabilities and In India children with disabilities in spe- also had some targets or plans on such issues cial schools fall under the responsibility of the as data collection, teacher training, access to Ministry of Social Justice and Empowerment, school buildings, and the provision of addi- while children in mainstream schools come tional learning materials and support (64). under the Department of Education in the For example Ghana has enrolment targets, Ministry of Human Resource Development (32). including one that all children with “nonsevere This division reflects the cultural perception that special educational needs” should be educated children with disabilities are in need of welfare in mainstream schools by 2015. Djibouti and rather than equality of opportunity (11). This Mozambique mention targets for children in particular model tends to further segregate chil- regular schools. Kenya is committed to increas- dren with disabilities, and shifts the focus from ing the gross enrolment rate of disabled children education and achieving social and economic to 10% by 2010 and also has targets for training inclusion to treatment and social isolation. teachers and providing equipment. However, while a further 13 countries mentioned disa- Lack of legislation, policy, bled children they provided little detail of their targets, and plans proposed strategies and five countries did not While there are many examples of initiatives refer to disability or inclusion at all. to include children with disabilities in educa- tion, a lack of legislation, policy, targets and Inadequate resources plans tends to be a major obstacle in efforts Limited or inappropriate resources are regarded to provide Education for All (62). The gaps in as a significant barrier to ensuring inclusive edu- policy that are commonly encountered include cation for children with disabilities (65). A study a lack of financial and other targeted incentives in the United States found that the average cost for children with disabilities to attend school for educating a child with a disability was 1.9 – and a lack of social protection and support times the cost for a child without a disability, with 214 Chapter 7 Education the multiplier ranging from 1.6 to 3.1 depending Inadequate training and on the type and extent of the disability (66). In support for teachers most developing countries it is difficult to reach Teachers may not have the time or resources all those in need even when educational systems to support disabled learners (70). In resource- are well planned and support inclusion. poor settings classrooms are frequently over- National budgets for education are often lim- crowded and there is a severe shortage of well ited and families are frequently unable to afford trained teachers capable of routinely handling the costs of education (9, 17, 67). There are short- the individual needs of children with dis- ages of resources such as few schools, inadequate abilities (71, 72). The majority of teachers lack facilities, insufficient qualified teachers and a lack sign-language skills creating barriers for Deaf of learning materials (6). An assessment in 2006 pupils (73). Other supports such as classroom on the status of El Salvador’s capacity to create assistants are also lacking. Advances in teacher inclusive educational opportunities for students education have not necessarily kept pace with with disabilities found that there was limited the policy changes that followed the Salamanca funding to provide services to all students with Declaration. For example, in India the pre- disabilities (68). service training of regular teachers includes no The Dakar Framework for Action rec- familiarization with the education of children ognizes that achieving Education for All will with special needs (64). require increased financial support by coun- tries and increased development assistance Physical barriers from bilateral and multilateral donors (67). But Physical access to school buildings is an essen- this has not always been forthcoming, restrict- tial prerequisite for educating children with ing progress (17). disabilities (65). Those with physical disabili- ties are likely to face difficulties in travelling School problems to school if, for example, the roads and bridges are unsuitable for wheelchair use and the dis- Curriculum and pedagogy tances are too great (17). Even if it is possible Flexible approaches in education are needed to reach the school, there may be problems of to respond to the diverse abilities and needs of stairs, narrow doorways, inappropriate seating, all learners (69). Where curricula and teaching or inaccessible toilet facilities (74). methods are rigid and there is a lack of appro- priate teaching materials – for example, where Labelling information is not delivered in the most appro- Children with disabilities are often categorized priate mode such as sign language and teaching according to their health condition to deter- materials are not available in alternative formats mine their eligibility for special education such as Braille – children with disabilities are and other types of support services (29). For at increased risk of exclusion (69). Assessment example, a diagnosis of dyslexia, blindness, or and evaluation systems are often focused on deafness can facilitate access to technological academic performance rather than individual and communication support and specialized progress and therefore can also be restrictive teaching (75). But assigning labels to children for children with special education needs (69). in education systems can have negative effects Where parents have anxieties about the quality including stigmatization, peer rejection, lower of mainstream schools, they are more likely to self-esteem, lower expectations, and limited push for segregated solutions for their children opportunities (29). Students may be reluctant with disabilities (17). about revealing their disability due to negative 215 World report on disability attitudes, thus missing out on needed sup- teachers in both countries generally favoured port services (76). A study in two states of the types of disabilities they perceived to be easier United States examined the responses of 155 to work with in mainstream settings (36). preschool teachers to the inclusion of children Even where people are supportive of stu- with disabilities (77). Two distinct versions of dents with disabilities, expectations might be a questionnaire were created, including short low, with the result that little attention is paid sketches describing children with disabilities. to academic achievement. Teachers, parents, One included a “labelling” version that used and other students may well be caring but at terms such as cerebral palsy. The other did not the same time not believe in the capacity of use labels, but simply described the children. the children to learn (86, 87). Some families The teachers who completed the non-labelling with disabled students may believe that special version were more positive about including schools are the best places for their children’s disabled children than those who completed education (76). the labelling version. This suggested that a label can lead to more negative attitudes and Violence, bullying, and abuse that adults’ attitudes were critical in develop- Violence against students with disabilities – by ing policies on the education of children with teachers, other staff, and fellow students – is disabilities. common in educational settings (20). Students with disabilities often become the targets of Attitudinal barriers violent acts including physical threats and Negative attitudes are a major obstacle to the abuse, verbal abuse, and social isolation. The education of disabled children (78, 79). In some fear of bullying can be as great an issue for cultures people with disabilities are seen as a children with disabilities as actual bullying form of divine punishment or as carriers of (88). Children with disabilities may prefer to bad fortune (80, 81). As a result, children with attend special schools, because of the fear of disabilities who could be in school are some- stigma or bullying in mainstream schools (88). times not permitted to attend. A community- Deaf children are particularly vulnerable to based study in Rwanda found that perceptions abuse because of their difficulties with spoken of impairments affected whether a child with communication. a disability attended school. Negative commu- nity attitudes were also reflected in the language used to refer to people with disabilities (82, 83). Addressing barriers The attitudes of teachers, school admin- to education istrators, other children, and even family members affect the inclusion of children with Ensuring the inclusion of children with disabilities in mainstream schools (74, 84). disabilities in education requires both sys- Some school teachers, including head teach- temic and school level change (89). As with ers, believe they are not obliged to teach chil- other complex change, it requires vision, dren with disabilities (84). In South Africa it is skills, incentives, resources, and an action thought that school attendance and completion plan (90). One of the most important ele- are influenced by the belief of school admin- ments in an inclusive educational system istrators that disabled students do not have a is strong and continuous leadership at the future in higher education (85). A study com- national and school levels – something that paring Haiti with the United States found that is cost-neutral. 216 Chapter 7 Education System-wide interventions launched a national programme of inclusive education (95). A 1993 study carried out in Legislation a quarter of the country’s primary schools, The success of inclusive systems of education involving interviews with more than 2649 depends largely on a country’s commitment to teachers, found that 17% of children in Lesotho adopt appropriate legislation, develop policies had disabilities and special educational needs and provide adequate funding for implementa- (95). The national programme for inclusive tion. Since the mid-1970s Italy has had legisla- education was launched in 10 pilot schools, tion in place to support inclusive education for one in each district of the country. Training all children with disabilities resulting in high in inclusive teaching was developed for teach- inclusion rates and positive educational out- ers in these schools, and for student teachers, comes (33, 91, 92). with the help of specialists and people with dis- New Zealand shows how government min- abilities themselves. A recent study on inclusive istries can promote an understanding of the education in Lesotho found variability in the right to education of disabled students by: way that teachers addressed the needs of their ■ publicizing support available for disabled children (96). There was a positive effect on children the attitudes of teachers, and without a formal ■ reminding school boards of their legal policy it is unlikely that improvements would responsibilities have occurred. ■ reviewing information provided to parents ■ reviewing complaints procedures (93). National plans Creating or amending a national plan of action A survey of low-income and middle-income and establishing infrastructure and capacity to countries found that if political will is lacking, implement the plan are key to including children legislation will have only a limited impact (31). with disabilities in education (79). The implica- Other factors leading to a low impact include tions of Article 24 of the CRPD are that institu- insufficient funding for education, and a lack of tional responsibility for the education of children experience in educating people with disabilities with disabilities should remain within the or special educational needs. Ministry of Education (97), with coordination, as appropriate, with other relevant ministries. Policy National plans for Education For All should: Clear national policies on the education of chil- ■ reflect international commitments to the dren with disabilities are essential for the devel- right of disabled children to be educated; opment of more equitable education systems. ■ identify the number of disabled children UNESCO has produced guidelines to assist and assess their needs; policy-makers and managers to create poli- ■ stress the importance of parental support cies and practices supportive of inclusion (94). and community involvement; Clear policy direction at the national level has ■ plan for the main aspects of provision – enabled a wide range of countries to undertake such as making school buildings acces- major educational reforms – including Italy, sible, and developing the curriculum, the Lao People’s Democratic Republic, Lesotho, teaching methods, and materials to meet and Viet Nam (see Box 7.3). a diversity of needs; In 1987 Lesotho started work on a series ■ increase capacity, through the expansion of of policies on special education. By 1991 it provision and training programmes; had established a Special Education Unit and ■ make available sufficient funds; 217 World report on disability Box 7.3. Inclusion is possible in Viet Nam – but more can be done In the early 1990s Viet Nam launched a major programme of reform to improve the inclusion of students with disabilities in education. The Centre for Special Education worked with an international nongovernmental organi- zation to set up two pilot projects, one rural and one urban. Local steering committees for each project were active in raising awareness in the community and conducting house-to-house searches for children who were missing from official school lists. The pilot projects identified 1078 children with a wide range of impairments who were excluded. Training was provided to administrators, teachers, and parents on: ■ the benefits of inclusive education ■ special education services ■ individualized educational programmes ■ carrying out accommodation and environmental modifications ■ assessment ■ family services. In addition, technical assistance was given in such areas as mobility training for blind students and training for parents on exercises to improve mobility for children with cerebral palsy. Four years later, an evaluation found that 1000 of the 1078 children with disabilities had been successfully included in general education classes in local schools – an achievement welcomed by both teachers and parents. With international donor support a similar programme was conducted in three other provinces. Within three years attendance rates in regular classes of children with disabilities increased from 30% to 86%, and eventually 4000 new students were enrolled in neighbourhood schools. Follow-up evaluations found that teachers were more open to including students with disabilities than previously – and were better equipped and more knowledgeable about inclusive practices. Teachers and parents had also raised their expectations of children with disabilities. More important, the children were better integrated into their communities. The average cost of the programme for a student with disabilities in the inclusive setting was US$ 58 per year, compared with US$ 20 for a student without disabilities and US$ 400 for education in segregated settings. This sum did not cover specialized equipment – such as hearing aids, wheelchairs, and Braille printers, which many students with disabilities required and whose cost was prohibitive for most families. Despite the progress, only around 2% of preschool and primary schools in Viet Nam are inclusive, and 95% of children with disabilities still do not have access to school (90). But the success of the pilot projects has helped change attitudes and policies on disability and has led to greater efforts on inclusion. The Ministry of Education and Training has committed itself to increase the percentage of children with disabilities being educated in regular classes. New laws and policies that support inclusive education are being implemented. ■ conduct monitoring and evaluation, and budget (0.92% in Nicaragua and 2.3% in improve the qualitative and quantitative Panama); data on students (64). ■ through financing the particular needs of institutions – for materials, teaching aids, Funding training, and operational support (as in There are basically three ways to finance special Chile and Mexico); needs education, whether in specialized insti- ■ through financing individuals to meet their tutions or mainstream schools: needs (as in Denmark, Finland, Hungary, ■ through the national budget, such as set- and New Zealand). ting up a Special National Fund (as in Brazil), financing a Special Education Other countries, including Switzerland and Network of Schools (as in Pakistan), or as the United States, use a combination of funding a fixed proportion of the overall education methods that include national financing that 218 Chapter 7 Education can be used flexibly for special needs education are more heavily concentrated among younger at the local level. The criteria for eligibility of age groups, and drop off sharply by secondary funding can be complex. Whichever funding school (100). The decline in resources for these model is used, it should: categories may reflect higher drop-out rates for ■ be easy to understand these groups, especially in the later stages of ■ be flexible and predictable secondary school, implying that the system is ■ provide sufficient funds not meeting their educational needs. ■ be cost-based and allow for cost control Table 7.2 summarizes the data for a range ■ connect special education to general of Central and South American countries, education making comparisons with similar data from ■ be neutral in identification and placement New Brunswick province in Canada, the United (98, 99). States, and the median of the OECD countries. It is clear that the Central and South American One system for comparing data on resources countries are providing resources for students between countries categorizes students accord- with disabilities in the pre-primary and pri- ing to whether their needs arise from medical mary years. But there is a rapid fall-off of pro- conditions, behavioural, or emotional condi- vision in the early secondary school period and tions, or socioeconomic or cultural disadvan- no provision at all in the later secondary period. tages (31). The resources dedicated to children This contrasts with the OECD countries, which with medical diagnoses remain the most con- provide education for students with disabilities stant across ages. Those allocated to children across the full age range, even though the pro- with socioeconomic or cultural disadvantages vision is reduced at older ages. Table 7.2. Percentage of students with disabilities receiving educational resources by country and by level of education Country Compulsory Pre-primary Primary Lower Upper education (%) (%) (%) secondary (%) secondary (%) Belize 0.95 – 0.96 – – Brazil 0.71 1.52 0.71 0.06 – Chile 0.97 1.31 1.17 1.34 – Colombia 0.73 0.86 0.84 0.52 N/A Costa Rica 1.21 4.39 1.01 1.48 N/A Guyana 0.15 N/A 0.22 N/A N/A Mexico 0.73 0.53 0.98 0.26 – Nicaragua 0.40 0.64 0.40 – – Paraguay 0.45 N/A 0.45 N/A N/A Peru 0.20 0.94 0.30 0.02 N/A Uruguay 1.98 – 1.98 – – United States of America 5.25 7.38 7.39 3.11 3.04 New Brunswick province, 2.89 – 2.19 3.80 3.21 Canada   Median of OECD countries 2.63 0.98 2.43 3.11 1.37 Note: Mexico is an OECD country. Only partial data are available for countries listed in italics. N/A not applicable. – not available/never collected. Source (31, 101). 219 World report on disability Ensuring children with disabilities are able into ability groups is often an obstacle to inclu- to access the same standard of education as sion whereas mixed-ability, mixed-age class- their peers often requires increased financing rooms can be a way forward (17, 69). In 2005 the (17). Low-income countries will require long- European Agency for Development in Special term predictable financing to achieve this. In Needs Education studied forms of assessment the Lao People’s Democratic Republic, Save that support inclusion in mainstream settings the Children and the Swedish International (105). Involving 50 assessment experts in 23 Development Cooperation Agency provided countries, the study addressed how to move from long-term funding and technical support for an a deficit – mainly medically-based – approach to Inclusive Education Project from 1993–2009. an educational or interactive approach. The fol- The project resulted in a centralized, national lowing principles were proposed: approach to the development of policy and ■ Assessment procedures should promote practice in inclusive education. Services began learning for all students. in 1993, when a pilot school opened in the capi- ■ All students should be entitled to be part of tal, Vientiane. There are now 539 schools across all assessment procedures. 141 districts providing inclusive education and ■ The needs of students with disabilities specialized support for more than 3000 chil- should be considered within all general dren with disabilities (102). assessment policies as well as within poli- While the costs of special schools and cies on disability-specific assessment. inclusive schools are difficult to determine it is ■ The assessment procedures should comple- generally agreed that inclusive settings are more ment each other. cost-effective (33). Inclusion has the best chance ■ The assessment procedures should aim to of success when school funding is decentral- promote diversity by identifying and valu- ized, budgets are delegated to the local level, and ing the progress and achievements of each funds are based on total enrolment and other student. indicators. Access to small amounts of flexible ■ Inclusive assessment procedures should funds can promote new approaches (103). explicitly aim to prevent segregation by avoiding – as far as possible – forms of label- School interventions ling. Instead, assessments should focus on learning and teaching practices that lead to Recognizing and addressing more inclusion in a mainstream setting. individual differences Education systems need to move away from Individualized education plans are a useful more traditional pedagogies and adopt more tool for children with special educational needs learner-centred approaches which recognize to help them to learn effectively in the least that each individual has an ability to learn restrictive environments. Developed through a and a specific way of learning. The curricula, multidisciplinary process, they identify needs, teaching methods and materials, assessment learning goals and objectives, appropriate and examination systems, and the manage- teaching strategies, and required accommo- ment of classes all need to be accessible and dations and supports. Many countries such as flexible to support differences in learning pat- Australia, Canada, New Zealand, the United terns (19, 69). Kingdom and the United States have policies Assessment practices can facilitate or and documented processes for such plans (106). hinder inclusion (103). The need to attain aca- Creating an optimum learning environ- demic excellence often pervades school cultures, ment will assist children in learning and so policies on inclusion need to ensure that all achieving their potential (107). Information children reach their potential (104). Streaming and communication technologies, including 220 Chapter 7 Education assistive technologies, should be used when- children with disabilities to participate in ever possible (69, 108). Some students with dis- mainstream classrooms – they should not be abilities might require accommodations such regarded as substitute teachers. Their success- as large print, screen readers, Braille and sign ful deployment requires effective communica- language, and specialized software. Alternative tion and planning with the classroom teacher, a formats of examination may also be needed, shared understanding of their role and respon- such as oral examinations for non-readers. sibilities, and ongoing monitoring of the way Learners with difficulty in understanding as support is provided (110, 111). There is a danger a result of intellectual impairments may need that extensive use of teaching assistants may adapted teaching styles and methods. The discourage more flexible approaches and side- choices regarding reasonable accommodations line disabled children in class (93). Special needs will depend on the available resources (71). assistants should not hinder children with dis- abilities from interacting with non-disabled Providing additional supports children or from engaging in age-appropriate To ensure the success of inclusive education activities (88). policies some children with disabilities will Early identification and intervention can require access to additional support services reduce the level of educational support chil- (5). The additional costs associated with these dren with disabilities may require throughout is likely to be offset in part by savings from stu- their schooling and ensure they reach their dents in specialized institutions transferring to full potential (107). Children with disabilities mainstream schools. may require access to specialist health and Schools should have access to specialist education professionals such as occupational education teachers where required. In Finland therapists, physiotherapists, speech therapists, the majority of schools are supported by at least and educational psychologists to support their one permanent special education teacher. These learning (107). A review of early childhood teachers provide assessments, develop individ- interventions in Europe stressed the need for ualized education plans, coordinate services, proper coordination among health, education, and provide guidance for mainstream teach- and social services (112). ers (109). In El Salvador “support rooms” have Making better use of existing resources to been set-up in mainstream primary schools to support learning is also important, particu- provide services to students with special edu- larly in poorer settings. For example, while cation needs, including those with disabilities. schools in poor rural environments may have The services include assessments of students, large class sizes and fewer material resources, instruction on an individual basis or in small stronger community involvement and posi- groups, support for general education teachers, tive attitudes can overcome these barriers (65). and speech and language therapy and similar Many teaching materials that significantly services. Support room teachers work closely enhance learning processes can be locally made with parents, and receive a budget from the (103). Special schools, where they exist, can be Ministry of Education for training and salaries. valuable for disability expertise (early identi- In 2005 about 10% of the schools nationwide fication and intervention) and as training and had support rooms (68). resource centres (5). In low-income settings Teaching assistants – also known as learn- itinerant teachers can be a cost-effective means ing support assistants, or special needs assis- of addressing teacher shortages, assisting chil- tants – are increasingly used in mainstream dren with disabilities to develop skills – such as classrooms. Their role varies in different set- Braille literacy, orientation and mobility – and tings, but their main function is to support developing teaching materials (113). 221 World report on disability Box 7.4. Teacher education in Ethiopia Teacher training on special educational needs has been conducted in Ethiopia since the 1990s, a focus for much international support. Until the early 1990s, teacher education on special educational needs was primarily through short nongovernmental organization-funded workshops. This approach did not produce lasting changes in teach- ing and learning processes. Nor did it enable the government to be self-reliant in training special education staff. Starting in 1992, with support from the Finnish government, a six-month training course was launched at a teacher training institute (114). This was part of a drive to support existing special schools, introduce more special classes, and increase the number of learners within mainstream classes with support from itinerant teachers. Fifty teachers received university education from Finnish universities – 6 in Finland itself, 44 through distance learning, which cost around 10% of the direct education. Short support courses were developed at Addis Ababa University, and a special centre, the Sebeta Teacher Training Institute, was created as part of Sebeta School for the Blind. Between 1994 and 1998, 115 people graduated as special education teachers, and thousands of mainstream teachers received in-service training. But the facilities do not train enough teachers to meet the full demand for inclusive education (115). Other regular colleges and universities in Ethiopia now offer special needs education courses to all students, and Sebeta continues to offer a 10-month course to qualified teachers. As a result of Sebeta’s training programme, there has been an expansion in the numbers of special classes and disabled children attending school. But using Ministry of Education statistics, it is estimated that only 6000 identified disabled children have access to education of a primary school population of nearly 15 million (64). Building teacher capacity contains nine self-study booklets to assist The appropriate training of mainstream teach- teachers to improve their skills in diverse ers is crucial if they are to be confident and classroom settings (107). competent in teaching children with diverse ■ Module 4: Using ICTs to promote education educational needs. The principles of inclu- and job training for persons with disabili- sion should be built into teacher training ties in Toolkit of best practices and policy programmes, which should be about attitudes advice provides information on how infor- and values not just knowledge and skills (103). mation and communication technologies Post-qualification training, such as that offered can facilitate access to education for people at Ethiopia’s Sebeta Teacher Training Institute, with disabilities (108). can improve provision and – ultimately – the ■ Education in emergencies: Including every- rate of enrolment of students with disabilities one: INEE pocket guide to inclusive educa- (see Box 7.4). tion provides support for educators working Teachers with disabilities should be in emergency and conflict situations (117). encouraged as role models. In Mozambique a collaboration between a teacher training col- Teacher training should also be supported lege and a national disabled people’s organi- by other initiatives that provide teachers with zation, ADEMO, trains teachers to work with opportunities to share expertise and experi- learners with disabilities and also provides ences about inclusive education and to adapt scholarships for students with disabilities to and experiment with their own teaching meth- train as teachers (116). ods in supportive environments (69, 102). Several resources can assist teachers to Where segregated schools feature promi- work towards inclusive approaches for students nently, enabling special education teachers to with disabilities such as: make the transition to working in an inclu- ■ Embracing diversity: Toolkit for creating sive system should be a priority. In extend- inclusive, learning friendly environments ing inclusive education, special schools and 222 Chapter 7 Education mainstream schools have to collaborate (62). In ■ In Uganda teachers’ attitudes improved the Republic of Korea at least one special school simply by having regular contact with chil- in each district is selected by the government to dren with disabilities (56). work closely with a partner mainstream school, ■ In Mongolia a training programme on inclu- to encourage inclusion of disabled children sive education was run for teachers and par- through various initiatives such as peer support ents with the support of specialist teachers. and group work (76). The 1600 teachers trained had highly positive attitudes towards the inclusion of children Removing physical barriers with disabilities and towards working with Principles of universal design should underlie the parents: the enrolment of children with policies of access to education. Many physical disabilities in preschool facilities and primary barriers are relatively straightforward to over- schools increased from 22% to 44% (121). come: changing physical layout of classrooms can make a major difference (118). Incorporating The role of communities, universal design into new building plans is families, disabled people, and cheaper than making the necessary changes to an old building and adds only around 1% to the children with disabilities total construction cost (119). Communities Overcoming negative attitudes Approaches involving the whole community The physical presence of children with dis- reflect the fact that the child is an integral abilities in schools does not automatically member of the community and make it more ensure their participation. For participation likely that sustainable inclusive education for to be meaningful and produce good learning the child can be attained (see Box 7.5). outcomes, the ethos of the school – valuing Community-based rehabilitation (CBR) diversity and providing a safe and supportive projects have often included educational activi- environment – is critical. ties for children with disabilities and share the The attitudes of teachers are critical in ensur- goal of inclusion (5, 125). CBR-related activities ing that children with disabilities stay in school that support inclusive education include refer- and are included in classroom activities. A study ring children with disabilities to appropriate carried out to compare the attitudes of teachers schools, lobbying schools to accept children towards students with disabilities in Haiti and with disabilities, assisting teachers to support the United States showed that teachers are more children with disabilities, and creating links likely to change their attitudes towards inclusion between families and communities (59). if other teachers demonstrate positive attitudes CBR workers can also be a useful resource and a supportive school culture exists (36). Fear to teachers in providing assistive devices, and a lack of confidence among teachers regard- securing medical treatment, making the school ing the education of students with disabilities can environment accessible, establishing links to be overcome: disabled people’s organizations, and finding ■ In Zambia teachers in primary and basic employment or vocational training placements schools had expressed interest in includ- for children at the end of their school education. ing children with disabilities, but believed Examples of innovative practices that link that this was reserved for specialists. Many CBR to inclusive education can be found in had fears that such conditions as albinism many low-income countries: were contagious. They were encouraged to ■ In the Karamoja region of Uganda, where discuss their negative beliefs and to write most people are nomads and only 11.5% about them reflectively (120). of the population are literate, children’s 223 World report on disability Box 7.5. Sport for children with disabilities in Fiji Since March 2005 the Fiji Paralympic Committee (FPC) and the Australian Sports Commission have worked together to provide inclusive sport activities for children with disabilities in Fiji’s 17 special education centres. These activities are part of the Australian Sports Outreach Program, an Australian government initiative that seeks to help individuals and organizations deliver high-quality, inclusive sport-based programmes that contribute to social development. FPC’s grassroots programmes are designed to increase the variety and quality of sport choices available for children in Fijian schools. Its activities include: ■ Pacific Junior Sport – a games-based programme that provides opportunities for children to participate and develop their skills; ■ qito lai lai (“children’s games”) for smaller children; ■ arranging for sport federations – such as those of golf, table tennis, tennis, and archery – to run sessions in schools; ■ supporting schools so that students can play popular sports, such as football, volleyball, and netball, and paralympic sports such as boccia, goalball, and sitting volleyball; ■ managing regional and national sport tournaments, as well as festivals in which students test their skills in football, netball, and volleyball against children from mainstream schools; ■ providing role models through the athlete ambassador programme, in which athletes with a disability regularly visit schools, including mainstream schools. Sport can improve the inclusion and well-being of people with a disability: ■ by changing what communities think and feel about people with a disability – and in that way reducing stigma and discrimination; ■ by changing what people with a disability think and feel about themselves – and in that way empowering them to recognize their own potential; ■ by reducing their isolation and helping them integrate more fully into community life; ■ by providing opportunities which assists young people to develop healthy body systems (musculoskeletal, cardiovascular) and improve coordination. As a result of FPC’s work, each Friday afternoon across the country more than 1000 children with a disability are playing a sport. As the FPC’s sport development officer points out, “when people see children with a disability playing sport, they know that they are capable of doing many different things”. Source (122–124). domestic duties are essential to the sur- Disability (60). The support includes train- vival of their families. In this region a pro- ing new teachers and working with students, ject called Alternative Basic Education for parents, teachers, and the wider community Karamoja has been set up. This commu- to change attitudes and build the right struc- nity-based project has pushed for inclusion tures for delivering inclusive education. The in education (126). It encourages the par- project benefits 2568 children, of whom 282 ticipation of children with disabilities and have a mild to severe disability (127). school instruction in the local language. The curriculum is relevant to the community’s Parents livelihood, containing instruction on such Parents should be involved in all aspects of topics as livestock and crop production. learning (128). The family is the first source ■ The Oriang project in western Kenya has of education for a child, and most learning introduced inclusive education in five pri- occurs at home. Parents are frequently active mary schools. Technical and financial in creating educational opportunities for their assistance is provided by Leonard Cheshire children, and they need to be brought on board 224 Chapter 7 Education to facilitate the process of inclusion. In several systems become more inclusive. Child-to- countries individual parents, often with the child cooperation should be better used to support of parents’ associations, have taken promote inclusion (94). their governments to court, setting precedents Audiovisual methods have been particularly that opened regular schools to children with effective in bringing out the views of children in disabilities. Inclusion Panama pressured the a range of socioeconomic settings (129, 130). Panamanian government to change the law ■ Young people in nine Commonwealth requiring children with disabilities to be edu- countries were consulted about their views cated in a separate system. In 2003, as a result on the CRPD through a series of focus of its campaign, the government introduced groups. The right to education featured a policy to make all schools inclusive. NFU, a in the top three issues in three quarters of parents’ organization in Norway, has lent sup- these groups (131). port to parents in Zanzibar to collaborate with ■ In a refugee programme in Jhapa, Nepal, the education ministry in introducing inclusive children with disabilities were found to be education. In 2009 a parents’ organization in a neglected and vulnerable group (132). A Lebanon persuaded a teachers’ training college full-time disability coordinator for the pro- to conduct its practical training for teachers in gramme was therefore appointed to under- the community instead of in institutions. take participatory action research. Disabled children talked about their family lives and Disabled people’s organizations described how they were taunted if they Disabled people’s organizations also have a role left their homes. Both children and parents in promoting the education of disabled children listed education as the top priority. After 18 – for example, working with young disabled months more than 700 children had been people, providing role models, encouraging integrated into schools, and sign-language parents to send their children to school and training had been introduced in all refugee become involved in their children’s education, camps, for Deaf and non-deaf children. and campaigning for inclusive education. The ■ In September 2007 the Portuguese Southern Africa Federation of the Disabled, Ministry of Education organized a Europe- for instance, has set up a range of programmes wide consultation in collaboration with involving people with disabilities, including its the European Agency for Development in children and youth programme, running for Special Needs Education (133). The young the past 15 years. The programme focuses on all people consulted favoured inclusive educa- aspects of discrimination and abuse of children tion, but insisted that each person should with disabilities and their exclusion from edu- be able to choose where to be educated. cation and other social activities. However such Acknowledging that they gained social organizations frequently lack the resources and skills and experience of the real world in capacity to develop their role in education. inclusive schools, they also said that indi- vidualized specialist support had helped Children with disabilities them to prepare for higher education. The voices of children with disabilities them- selves must be heard, though they frequently are not. In recent years children have been Conclusion and more involved in studies of their experi- recommendations ences of education. The results of such child- informed research are of great benefit for Children with disabilities are less likely than educational planners and policy-makers and children without disabilities to start school and can be a source of evidence as educational have lower rates of staying and being promoted 225 World report on disability in school. Children with disabilities should ■ Establish monitoring and evaluation sys- have equal access to quality education, because tems. Data on the numbers of learners with this is key to human capital formation and their disabilities and their educational needs, participation in social and economic life. both in special schools and in mainstream While children with disabilities have his- schools, can often be collected through torically been educated in separate special existing service providers. Research is schools, inclusive mainstream schools in both needed on the cost–effectiveness and effi- urban and rural areas provide a cost-effective ciency of inclusive education. way forward. Inclusive education is better able ■ Share knowledge about how to achieve to reach the majority and avoids isolating chil- educational inclusion among policy- dren with disabilities from their families and makers, educators, and families. For communities. developing countries the experience of A range of barriers within education poli- other countries that have already moved cies, systems and services limit disabled chil- towards inclusion can be useful. Model dren’s mainstream educational opportunities. projects of inclusive education could be Systemic and school-level change to remove scaled up through local-to-regional-to- physical and attitudinal barriers and provide global networks of good practice. reasonable accommodation and support ser- vices is required to ensure that children with Adopt strategies to disabilities have equal access to education. promote inclusion A broad range of stakeholders – policy- makers, school administrators, teachers, ■ Focus on educating children as close to the families, and children with and without dis- mainstream as possible. This includes, if abilities – can contribute to improving educa- necessary, establishing links between special tional opportunities and outcomes for children education facilities and mainstream schools. with disabilities, as outlined in the following ■ Do not build a new special school if no spe- recommendations. cial schools exist. Instead, use the resources to provide additional support for children Formulate clear policies and with disabilities in mainstream schools. improve data and information ■ Ensure an inclusive educational infrastruc- ture – for example, by mandating minimum ■ Develop a clear national policy on the inclu- standards of environmental accessibility to sion of children with disabilities in education enable access to school for children with dis- supported by the necessary legal frame- abilities. Accessible transport is also vital. work, institutions, and adequate resources. ■ Make teachers aware of their responsi- Definitions need to be agreed on what con- bilities towards all children and build and stitutes “inclusive education” and “special improve their skills for teaching children educational needs”, to help policy-makers with disabilities. Educating teachers about develop an equitable education system that including children with disabilities should includes children with disabilities. ideally take place in both pre-service and ■ Identify, through surveys, the level and in-service teacher education. It should have nature of need, so that the correct support a special emphasis on teachers in rural and accommodations can be introduced. areas, where there are fewer services for Some students may require only modifica- children with disabilities. tions to the physical environment to gain ■ Support teachers and schools to move away access, while others will require intensive from a one-size-fits-all model towards instructional support. flexible approaches that can cope with 226 Chapter 7 Education diverse needs of learners – for example, disabilities. In the absence of specialist individualized education plans can ensure providers, use existing community-based the individual needs of students with dis- rehabilitation services to support children abilities are met. in educational settings. If these resources ■ Provide technical guidance to teachers that are absent, an attempt should be made to can explain how to group students, differ- develop these services gradually. entiate instruction, use peers to provide ■ Consider introducing teaching assistants assistance, and adopt other low-cost inter- to provide special support to children with ventions to support students having learn- disabilities, while ensuring that this does ing difficulties. not isolate them from other students. ■ Clarify and reconsider policies on the assessment, classification, and placement Support participation of students so that they take into considera- tion the interactional nature of disability, ■ Involve parents and family members. do not stigmatize children, and benefit the Parents and teachers should jointly decide individuals with disabilities. on the educational needs of a child. Children ■ Promote Deaf children’s right to educa- do better when families get involved, and tion by recognizing linguistic rights. Deaf this costs very little. children should have early exposure to sign ■ Involve the broader community in activi- language and be educated as multilinguals ties related to the education of children in reading and writing. Train teachers in with disabilities. This is likely to be more sign language and provide accessible edu- successful than policy decisions handed cational material. down from above. ■ Develop links between educational ser- Provide specialist services, vices and community-based rehabilitation where necessary – and other rehabilitation services, where they exist. 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Odense, Denmark, European Agency for Development in Special Needs Education, 2007. 232 Chapter 8 “My disabilities deprived me of the chance to participate in farming; nevertheless I didn’t give up. I raised ducks, sold aqua-cultural products, and traded waste materials. Although social discrimination and physical disability caused lots of difficulties, I never yielded. However, due to the hardship of the work, the ulcer on my right foot deteriorated, finally I had to have an amputation. Luckily with the help of friends and neighbours, I was successfully fitted with a prosthesis and restarted my career to seek a meaningful and independent life. From scratch, I began to raise cattle. I set up the Centre of Cattle Trading. It not only provides me a sufficient life, but also enables me to help many others who are also facing the challenges of leprosy.” Tiexi “A lot of people, when I tried to get into university and when I applied for jobs, they struggled to see past the disability. People just assumed because I had a disability, that I couldn’t perform even the simplest of tasks, even as much as operating a fire extin- guisher… I think the main reason I was treated differently, since I set out to become a nurse, was probably because people were scared, because they’ve never been faced with anyone like me before.” Rachael “I work at the catering unit of an NGO, supplying meals to 25 people who work there and sewing dolls when I am not cooking. The products are made for shops who buy because of the good quality, not because the things are made by people with disabilities. I have many friends at work. We all have intellectual disabilities. I do not have any other job choices because no one else would hire someone like me. It is hard to think what I would do if I had more choices, but maybe I would like to sing and dance and make music.” Debani “Before the earthquake we were a big family with seven children all with our wishes and dreams. But only three of us survived in the ruined blocks of the buildings. The US doctors managed to save only one of my legs. With prosthesis I restarted attending school. I was living with memories of past, which were only a few pictures left. Even though I acknowledged the need to further my education I had no wish to do it. The turning point in my life was an offer to work in the local TV channel as a starting journalist. At first I had the anticipation that disability could be a hindrance upon becoming a professional jour- nalist. But I had a very warm welcome; I was encouraged and had an on-job training for becoming a journalist. Very soon I felt comfortable in my new environment and position, was given equal number of responsibilities as others had and was not given any privilege.” Ani 8 Work and employment Across the world, people with disabilities are entrepreneurs and self- employed workers, farmers and factory workers, doctors and teachers, shop assistants and bus drivers, artists, and computer technicians (1). Almost all jobs can be performed by someone with a disability, and given the right environment, most people with disabilities can be productive. But as doc- umented by several studies, both in developed and developing countries, working age persons with disabilities experience significantly lower employ- ment rates and much higher unemployment rates than persons without dis- abilities (2–9). Lower rates of labour market participation are one of the important pathways through which disability may lead to poverty (10–15). In Article 27 the United Nations Convention on the Rights of Persons with Disabilities (CRPD) “recognizes the right of persons with disabilities to work, on an equal basis with others; this includes the opportunity to gain a living by work freely chosen or accepted in a labour market and work envi- ronment that is open, inclusive and accessible to persons with disabilities” (16). Furthermore, the CRPD prohibits all forms of employment discrimi- nation, promotes access to vocational training, promotes opportunities for self-employment, and calls for reasonable accommodation in the workplace, among other provisions. A number of factors impact labour market outcomes for persons with disabilities including; productivity differentials; labour market imperfec- tions related to discrimination and prejudice, and disincentives created by disability benefit systems (2, 17–19). To address labour market imperfections and encourage the employment of people with disabilities, many countries have laws prohibiting discrimination on the basis of disability. Enforcing antidiscrimination laws is expected to improve access to the formal econ- omy and have wider social benefits. Many countries also have specific meas- ures, for example quotas, aiming to increase employment opportunities for people with disabilities (20). Vocational rehabilitation and employment ser- vices – job training, counselling, job search assistance, and placement – can develop or restore the capabilities of people with disabilities to compete in the labour market and facilitate their inclusion in the labour market. At the heart of all this is changing attitudes in the workplace (see Box 8.1). 235 World report on disability Box 8.1. Key concepts The term “work” is broad and includes unpaid work in the home or in a family enterprise, paid work for another person or organization in the formal or informal economy, and self-employment. Livelihood is “the means by which an individual secures the necessities of life” (21). It may involve work at home or in the community, work alone or in a group, or for an organization, a government body, or a business. It may be work that is remunerated in kind, in cash, or by a daily wage or a salary (21). In many countries, people with disabilities are found predominantly in non-wage or non-salary forms of work (22). The “formal economy” is regulated by the government and includes employment in the public and private sectors where workers are hired on contracts, and with a salary and benefits, such as pension schemes and health insur- ance. The “informal economy” is the unregulated part of a country’s economy. It includes small-scale agriculture, petty trading, home-based enterprises, small businesses employing a few workers, and other similar activities (22). The term “labour force” refers to all adults of working age who are available, capable, and working or wanting to work (23). The “unemployed” includes people who are not employed but are available and searching for work. There are different indicators for measuring the work status of people with disabilities: ■ the unemployment rate is the number of unemployed people expressed as a percentage of the labour force; ■ the employment rate is the share of the working age population which works for pay; ■ the labour force participation rate is the proportion of the adult population which is economically active, whether employed or unemployed (22). ■ the employment ratio is the ratio of the employment rate of people with disabilities compared to the employ- ment rate of the general population. Understanding labour markets brings personal and social benefits, adding to a sense of human dignity and social Participation in the labour market cohesion (33). All individuals should be able to freely choose the direction of their If people with disabilities and their households personal lives, to develop their talents and are to overcome exclusion, they must have access capabilities to the full (16). to work or livelihoods, breaking some of the cir- ■ Accommodating the increasing num- cular links between disability and poverty (14, bers of people with disabilities in the 24–26). Some employers continue to fear that working age population. The prevalence people with disabilities are unqualified and not of disability is expected to increase in the productive (27, 28). But people with disabilities coming decades because of a rise in chronic often have appropriate skills, strong loyalty and conditions together with improved health low rates of absenteeism, and growing numbers and medical rehabilitation services that of companies find it efficient and profitable to preserve and prolong life. The ageing of hire people with disabilities (29, 30). the world’s population is also expected to The participation of people with disabili- increase the prevalence of disability. In all ties in the labour force is important for other world regions the proportion of people over reasons: the age of 60 is predicted to rise over the ■ Maximizing human resources. Productive next few decades (17, 18). engagement of persons with disabilities increases individual well-being and con- Labour market theory suggests, for reasons tributes to the national output (31, 32). of both supply and demand, that the employ- ■ Promoting human dignity and social ment rate of people with disabilities will be cohesion. Apart from income, employment lower than that of people without disabilities. 236 Chapter 8 Work and employment On the supply side, people with disabili- and middle-income countries, the availability ties will experience a higher cost of working, of data continues to be limited, despite recent because more effort may be required to reach improvements (37). And in many of these coun- the workplace and to perform the work, and tries, a significant proportion of people work in in countries with more generous disability the informal economy, and so do not appear in allowances, employment may result in a loss of all labour market statistics. Nor are they cov- benefits and health care coverage, whose value ered by employment legislation. is greater than the wages that could be earned Data from several countries show that (34). So the “reservation wage” of a person with employment rates for people with disabilities disability – the lowest wage a person is willing are below that of the overall population (see to work for – is likely to be higher than that Table 8.1 and see Table 8.2) with the employ- of a person without a disability. The resulting ment ratio varying from lows of 30% in South “benefit trap” is a source of concern in many Africa and 38% in Japan to highs of 81% in high-income countries (2, 35). Switzerland and 92% in Malawi. On the demand side, a health condition Because non-working people with disabili- may make a person less productive, especially ties often do not look for jobs and are thus not if the workplace environment does not accom- counted as part of the labour force, the unem- modate people with disabilities. In such cir- ployment rate may not give the full picture of cumstances, the person would be expected to their status in the labour market. Instead, the be offered a lower market wage. The effects of a employment rate is more commonly used as an disability on productivity are hard to calculate, indicator of the labour market status of people because they depend on the nature of impair- with disabilities. ment, the working environment, and the tasks Analysis of the World Health Survey required in the job. A blind person, for exam- results for 51 countries gives employment ple, might find it difficult to operate a crane but rates of 52.8% for men with disability and face no impediment to productivity as a tel- 19.6% for women with disability, compared ephone operator (36). In an agrarian economy with 64.9% for non-disabled men, and 29.9% most jobs are in the primary sector and involve for non-disabled women. A recent study from heavy manual labour, which those with limited the Organization for Economic Co-operation walking or carrying abilities may not be able to and Development (OECD) (2) showed that in perform. In addition, a person with a disability 27 countries working-age persons with disabili- may be offered a lower wage purely as a result ties experienced significant labour market dis- of discrimination. advantage and worse labour market outcomes A higher reservation wage and a lower than working-age persons without disabilities. market wage thus make a person with disabil- On average, their employment rate, at 44%, was ity less likely to be employed than one without over half that for persons without disability disability. (75%). The inactivity rate was about 2.5 times higher among persons without disability (49% Employment rates and 20%, respectively). The employment rate varies consider- In many countries data on the employment of ably for people with different disabilities with people with disabilities are not systematically individuals with mental health difficulties or available. Responses to an International Labour intellectual impairments (28, 44) experienc- Organization (ILO) survey in 2003 showed ing the lowest employment rates. A British that 16 of the 111 countries and territories analysis found that people with mental health responding had no data at all on employment difficulties faced greater difficulties in gaining in relation to disability (22). In low-income entry into the labour market and in obtaining 237 World report on disability Table 8.1. Employment rates and ratios in selected countries Country Year Employment rate of people Employment rate of Employment ratio with disabilities (%) overall population (%) Australiaa 2003 41.9 72.1 0.58 Austriaa 2003 43.4 68.1 0.64 Canadaa 2003 56.3 74.9 0.75 Germanya 2003 46.1 64.8 0.71 Indiab 2002 37.6 62.5 0.61 Japana 2003 22.7 59.4 0.38 Malawif 2003 42.3 46.2 0.92 Mexicoa 2003 47.2 60.1 0.79 Netherlandsa 2003 39.9 61.9 0.64 Norwaya 2003 61.7 81.4 0.76 Peruc 2003 23.8 64.1 0.37 Polanda 2003 20.8 63.9 0.33 South Africad 2006 12.4 41.1 0.30 Spaina 2003 22.1 50.5 0.44 Switzerlanda 2003 62.2 76.6 0.81 United Kingdoma 2003 38.9 68.6 0.57 USAe 2005 38.1 73.2 0.52   Zambiag 2005 45.5 56.5 0.81 Note: The employment rate is the proportion of the working age population (with or without disabilities) in employment. Definitions of working age differ across countries. Sources: a (38); b (8); c (39); d (7); e (40); f (41); g (42). Table 8.2. Employment rates, proportion of disabled and not disabled respondents Individuals Percent Low-income countries High-income countries All countries Not disabled Disabled Not disabled Disabled Not disabled Disabled Male 71.2 58.6* 53.7 36.4* 64.9 52.8* Female 31.5 20.1* 28.4 19.6* 29.9 19.6* 18–49 58.8 42.9* 54.7 35.2* 57.6 41.2* 50–59 62.9 43.5* 57.0 32.7* 60.9 40.2*   60 and over 38.1 15.1* 11.2 3.9* 26.8 10.4* Note: Estimates are weighted using WHS post-stratified weights, when available (probability weights otherwise), and age- standardized. * t-test suggests significant difference from “Not disabled” at 5%. Source (43). earnings compared with other workers (45). and more likely to be employed in segregated Another study found that people with intellec- settings (46). tual impairments were three to four times less likely to be employed than people without disa- Types of employment bilities – and more likely to have more frequent and longer periods of unemployment. They In many countries, labour markets are largely were less likely to be competitively employed informal, with many self-employed workers. In 238 Chapter 8 Work and employment India, for example, 87% of people with disabili- Barriers to entering ties who work are in the informal sector (47). the labour market People with disabilities may need flexibil- ity in the scheduling and other aspects of their People with disabilities are disadvantaged in work – to give them proper time to prepare for the labour market. For example, their lack of work, to travel to and from work, and to deal access to education and training or to financial with health concerns. Contingent and part-time resources may be responsible for their exclu- work arrangements, which often provide flex- sion from the labour market – but it could also ibility, may therefore be attractive to them. But be the nature of the workplace or employers’ such jobs may provide lower pay and fewer ben- perceptions of disability and disabled people. efits. Research in the United States of America Social protection systems may create incentives has shown that 44% of workers with disabilities for people with disabilities to exit employment are in some contingent or part-time employ- onto disability benefits (2). More research is ment arrangement, compared with 22% of those needed on factors that influence labour market without disabilities (48). Health issues were the outcomes for persons with disabilities. most important factor explaining the high prev- alence of contingent or part-time work. Lack of access Wages Education and training are central to good and productive work for a reasonable income (52– If people with disabilities are employed, they 54). But young people with disabilities often commonly earn less than their counterparts lack access to formal education or to opportu- without disabilities; women with disabilities nities to develop their skills – particularly in commonly earn less than men with disabilities. the increasingly important field of information The wage gaps between men and women with technology (55–57). The gap in educational and without disabilities are thus as important attainment between those with a disability as the difference in employment rates (45, 49). and those without is thus an ever-increasing In the United Kingdom of Great Britain and obstacle (9). Northern Ireland only half of the substantial People with disabilities experience envi- difference in wages and participation rates ronmental obstacles that make physical access between disabled and non-disabled male work- to employment difficult. Some may not be able ers was attributable to differences in productiv- to afford the daily travel costs to and from work ity (19). Empirical research in the United States (58, 59). There may also be physical barriers to found that discrimination reduced wages and job interviews, to the actual work setting, and opportunities for employment. While preju- to attending social events with fellow employ- dice had a strong effect for a relatively small ees (54). Access to information can be a further minority of men with disabilities, it appeared barrier for people with visual impairments (60). relatively unimportant in determining wage A lack of access to funding is a major differentials for a much larger group (36). obstacle for anyone wanting to set up a busi- It is unclear whether the wage gap is as ness. For a person with a disability, particu- marked in developing countries. Recent stud- larly a disabled woman, it is usually even more ies in India have produced mixed results, with difficult, given the frequent lack of collateral. a significant wage gap found for males in rural Many potential lenders – wrongly – perceive labour markets in Uttar Pradesh but not for people with disabilities to be high risks for similar workers in Tamil Nadu (50, 51). Further loans. So credit markets can prevent people research is needed in this area, based on nation- with disabilities from obtaining funds for ally representative data. investment (49). 239 World report on disability Misconceptions about disability mandate, for instance, shorter working days, more rest periods, longer paid leave, and higher Misconceptions about the ability of people with severance pay for disabled workers, irrespec- disabilities to perform jobs are an important tive of the need (66). While these regulations reason both for their continued unemployment are made with best intentions, they might in and – if employed – for their exclusion from some cases lead employers to see workers with opportunities for promotion in their careers disabilities are less productive and more costly (61). Such attitudes may stem from prejudice and thus less desirable than those without or from the belief that people with disabilities disabilities. are less productive than their non-disabled counterparts (62). In particular, there may be ignorance or prejudice about mental health Addressing the barriers to difficulties and about adjustments to work work and employment arrangements that can facilitate employment (45). Misconceptions are often prevalent not A variety of mechanisms have been used only among non-disabled employers but also around the world to address barriers to the among family members and disabled people labour market: themselves (9). ■ laws and regulations Some people with disabilities have low self- ■ tailored interventions expectations about their ability to be employed ■ vocational rehabilitation and training and may not even try to find employment. ■ self-employment and microfinance The social isolation of people with disabilities ■ social protection restricts their access to social networks, espe- ■ working to change attitudes. cially of friends and family members, that could help in finding employment (54). Not all of these reach workers in the infor- mal sector, which predominates in many coun- Discrimination tries. Evidence on the costs and individual and social benefits, and outcomes of these mecha- Employers may discriminate against people nisms is at best weak and sometimes even con- with disabilities, because of misconceptions tradictory (67–70). More research is needed to about their capabilities, or because they do not understand which measures improve labour wish to include them in their workforce (63). market opportunities for people with disabili- Different impairments elicit different degrees ties, and are cost-effective and sustainable. of prejudice, with the strongest prejudice exhibited towards people with mental health Laws and regulations conditions (36, 64). Of people with schizophre- nia, 29% experienced discrimination in either Laws and regulations affecting employment for finding or keeping a job, and 42% felt the need people with disabilities, found in many places to conceal their condition when applying for (71), include anti-discrimination laws and work, education, or training (65). affirmative action. General employment laws also often regulate retention and other employ- Overprotection in labour laws ment-related issues of those who become disa- bled while working. But the implementation Several countries, particularly some in east- and effectiveness of disability protection provi- ern Europe, retain a protective view towards sions varies considerably. Often they are poorly workers with disabilities. Their labour codes enforced and not well known (47, 72). 240 Chapter 8 Work and employment Anti-discrimination laws More recent studies suggest that while the Anti-discrimination laws make it illegal to make numbers of disabled people in employment did decisions about a person’s employment on the decline, this was not a result of the Americans basis of their disability, as in Australia (1992), with Disabilities Act but because of a new defi- Canada (1986, 1995), New Zealand (1993), and nition, used in the welfare support system, of the United States (1990). More recently, other what constituted disability (69). In the United countries have incorporated disability discrim- Kingdom the Disability Discrimination Act ination clauses into more general legislation, as had no impact in the period immediately after in Germany and South Africa (73), while Brazil its introduction, and may have led to a fall in and Ghana have anti-discrimination clauses on the employment rate (70). It may have been disability in their constitutions (71). more effective as a disincentive to dismissing In the formal sector the reasonable accom- workers who developed a disabling condition modation requirement refers to adapting the than as a tool to promote hiring. But recent evi- job and the workplace to make employment dence does suggest a narrowing of the employ- easier for people with disabilities, where ment gap in the United Kingdom (76), though this does not impose an undue burden (see the legislation may have helped disabled men Article 2 of the CRPD). The requirements are more than disabled women (45). expected to reduce employment discrimina- tion, increase access to the workplace, and Affirmative action change perceptions about the ability of people Some anti-discrimination measures call for with disabilities to be productive workers. “affirmative action” in employment. In 2000 Examples of reasonable accommodations the Council of the European Union called on include ensuring recruitment and selection its member states to introduce, by 2006, poli- procedures are accessible to all, adapting the cies on the employment of people with disabil- working environment, modifying working ities (77). In response, Portugal, for instance, times and other working arrangements, and drew up a National Action Plan that included providing screen-reader software and other affirmative action to raise the number of people assistive technologies (74). with disabilities in employment (78). In Israel Requirements for employers to make rea- affirmative action requirements for employers, sonable accommodations can be voluntary, as set out in the Equal Rights for Persons with in Denmark, or mandatory, as in the United Disabilities Law of 1998, have been judicially States. The cost of the accommodations can be upheld as legal, applying to both hiring and borne by employers, employees, or both. severance (79). Brazil also promotes affirma- There is mixed evidence on the success of tive action in employment through its consti- anti-discrimination laws in bringing people tutional anti-discrimination Clause 37 (71). with disabilities into the workforce (75). On the whole, such laws seem to have been more suc- Tailored interventions cessful in preventing discrimination among those who are already employed. Early research Quotas on the Americans with Disabilities Act suggested Many countries stipulate quotas for the employ- that implementation of the Act caused a decline ment of people with disabilities in the public in employment of people with disabilities (67). and private sectors. The implicit assumption is Possibly employers avoided potential litigation that, without quotas employers would turn away simply by not employing people with disabilities disabled workers because of discrimination, or perhaps the obligation to provide reasonable fears about lower productivity, or the potential accommodation acted as a disincentive to taking increase in the cost of labour, for example the on staff with disabilities (68). cost of accommodations (53, 73). However, the 241 World report on disability assumption that quotas correct labour market Incentives to employers imperfections to the benefit of persons with If employers bear the cost of providing rea- disabilities is yet to be documented empirically, sonable accommodations, they may be less as no thorough impact evaluation of quotas on likely to hire people with disabilities – to avoid employment of persons with disabilities has additional costs of labour. If employees bear been performed. the cost, their mobility in the market may be Germany has a quota of 5% for the employ- reduced because of the risk of incurring further ment of severely disabled employees in firms accommodation-related expenses in a new job. employing more than 20 people. In 2002 the To counter these obstacles, various financial figure for private firms was 3.4%, and in 2003 incentives can be offered: 7.1% for government employment (80). In ■ Tax incentives are often offered to employ- South Africa government departments and ers, especially smaller employers (85). state bodies are bound by statutory provisions ■ Government employment agencies can stipulating that at least 2% of their workforce provide advice and funding for employ- must consist of people with disabilities. But ment-related accommodations, as with one the quota in the state sector has not been met state’s vocational rehabilitation agency in (81). Turkey has a 3% quota for firms with more the United States (86). than 50 workers, with the state paying all the ■ Workplace modifications can be sup- employers’ social security contributions for ported. In Australia the Department of disabled workers up to the limit of the quota, Employment and Workplace Relations and half the contributions for disabled workers funds the Workplace Modifications above the quota. Scheme, which provides up to A$ 10 000 In many cases fines are imposed on employ- for modifications to accommodate new ers who fail to meet their quotas. Such fines can employees with disabilities (87). be used to support initiatives to boost disability employment. In China companies that fail to Supported employment meet the 1.5% quota pay a fee to the Disabled Special employment programmes can make Persons Employment Security Fund, which an important contribution to the employment supports training and job placement services of people with severe disabilities, particularly for people with disabilities (82). those with intellectual impairments and mental During the transition to free market econo- health conditions (38). mies, several countries in Eastern Europe and the Supported employment can integrate former Soviet Union introduced quotas to replace people with disabilities into the competitive the former system where jobs were set aside in labour market. It provides employment coach- specific industries for workers with disabilities. ing, specialized job training, individually tai- Fines for not meeting quotas paid for vocational lored supervision, transportation, and assistive rehabilitation and job training programmes. technology, all to enable disabled people to In most Organisation for Economic learn and perform better in their jobs (88). Its Co-operation and Development (OECD) coun- success has been documented for people with tries the rate of filling quotas ranges from 50% to severe disabilities, including those with psy- 70% (73, 83). Quotas attract controversy. They can chiatric or intellectual impairment, learning be unpopular with employers, who would often disabilities, and traumatic brain injury (89–92). rather pay a fine than attempt to fill their statutory Social firms and other social enterprises quotas. Among disabled people’s organizations, work in the open market, but have the social they are sometimes regarded as diminishing the objective of employing people experienc- potential value of workers with disabilities (84). ing the greatest disadvantage in the labour 242 Chapter 8 Work and employment market. Often such enterprises seek to give disabled people onto the open labour market employment opportunities for persons with because they may then lose their “best work- disabilities, particularly those with intellec- ers” (98). In New Zealand there have been tual impairments and mental health condi- attempts to make sheltered employment more tions, alongside non-disabled people (93, 94). professional and competitive and to ease the Recent estimates suggest there are around transition to the open market (see Box  8.2) 3800 social firms in Europe, predominantly (38). A recent European trend has been for in Germany and Italy, employing around sheltered workshops to transition to become 43 000 people with disabilities (95). The evi- social firms. dence base for social firms is currently weak. Where successful, it is argued that enterprises Employment agencies can result in savings for health and social care General employment agencies have been budgets, as well as social returns on invest- encouraged – and in some cases required ment, in the form of well-being and independ- by law – to serve job seekers with disabili- ence. For example, analysis of the Six Mary’s ties in the same setting as other job seekers, Place guesthouse project in Edinburgh (96) rather than referring people with disabilities suggested that for every £1 invested, £5.87 to special placement services. In the United was returned in the form of savings in mental States the Workforce Investment Act of 1998 health and welfare benefits, new tax income, brought together a wide range of job place- and increased personal income. Cost–benefit ment programmes into the “One Stop Centers”. assessments of social firms and supported Countries such as Austria, Belgium, Denmark, employment also need to include the wider and Finland include people with disabilities in health, social, and personal benefits (97). services offered by mainstream employment agencies (101). Other countries have targeted Sheltered employment services, such as BizLink, Singapore (102). Sheltered work provides employment in sepa- More than 3000 employment service agencies rate facilities, either in a sheltered business or for people with disabilities operate in China in a segregated part of a regular enterprise (73), (103), where the Chinese Disabled Persons’ and is intended for those who are perceived as Federation has a leading role in fostering unable to compete in the open labour market. employment. For example, in Switzerland, a country with Thinking behind the provision of employment one of the highest employment rates for people services for people with disabilities is changing: with disabilities, much of the employment is ■ There has been a move from a model of job in segregated settings (38). In France sheltered placement that tried to fit people into avail- employment offers regular pay and full social able job openings to a “person-centred” security coverage for people with one third or model involving the interests and skills of less work capacity loss and merely symbolic the individual. The aim is to find a match remuneration for those with more than two that will lead to viable longer term employ- thirds of work-capacity loss (38). Sheltered ment and a life-long career (104). workshops are controversial, because they seg- ■ There has been a shift from using sheltered regate people with disabilities and are associ- employment towards supported employ- ated with the charity ethos. ment – that is, from “train and place” to The CRPD promotes the opportunity for “place and train”. The idea is to employ people with disabilities to work in an open people first, before they are trained, to help labour market (16). However, there may be a dispel beliefs that disabled people cannot disincentive for sheltered workshops to move perform a particular job (105–107). 243 World report on disability Box 8.2. Improving vocational services for people with disabilities in New Zealand In 2001 the New Zealand government launched Pathways to Inclusion to increase the participation of people with disabilities both in the workforce and in communities (99). People with disabilities working in sheltered workshops had been paid less than the minimum wage, regardless of their skills or abilities. Providers of sheltered employment, with advice and government funding, shifted their operations to include supported employment and community participation services. Although sheltered work is still part of a range of vocational services funded through the Ministry of Social Development, supported employment services have now largely replaced it. An evaluation of the Pathways to Inclusion programme since its inception found the following (100): ■ the number of people participating in vocational services increased from 10 577 in 2003 to 16 130 in 2007; ■ employment outcomes have improved, with more participants either moving off benefits or declaring earn- ings while remaining on benefits; ■ the number of providers of vocational services that aim to achieve paid employment increased from 44% to 76% over three years; ■ the proportion of services providing segregated employment that paid at least the minimum wage all or most of the time increased from 10% in 2004 to 60% in 2007; ■ the number of service users moving off benefits or declaring earnings within 12 to 24 months of starting the service has increased – an indication of the long-term effectiveness of the services. Several successful user-controlled disabil- ■ In India the National Centre for Promotion ity employment services have been launched of Employment for Disabled People (113) in recent years: sensitizes the corporate world, campaigns ■ In Rio de Janeiro, Brazil, the Centro de for access, promotes education, and raises Vida Independiente serves as an employ- awareness. ment broker and ongoing support agency for disabled people (108). These programmes suggest that disabled ■ In Spain Fundación ONCE was founded in people’s organizations could expand their range 1988 to promote training and employment of activities for improving disability employ- and accessibility, funded by the national ment – such as job search and job matching, lottery – which is operated by ONCE, the training in technology and other job skills, and association of blind people (109). in interview skills. ■ In Manchester, United Kingdom, “Breakthrough” is an innovative user- Disability management controlled employment service that works Disability management refers to interventions with disabled people and employers, help- applied to individuals in employment who develop ing to find and sustain employment and to a health condition or disability. The main elements find training for work (110). of disability management are generally effective ■ In South Africa, Disability Employment case management, education of supervisors, work- Concerns was established in 1996 with place accommodation, and an early return to work the aim of emulating the ONCE model. with appropriate supports (114). The Canadian Owned by disabled people’s organizations, National Institute of Disability Management and it invests in and supports companies to Research (115) is an international resource that promote disability employment equity tar- promotes education, training, and research on gets (111, 112). workplace-based reintegration – the process that 244 Chapter 8 Work and employment maintains workers’ abilities while reducing costs Vocational rehabilitation of disability for employers and governments. and training In the United Kingdom the Pathways to Work programme is an initiative providing sup- Vocational rehabilitation services develop port in the fields of employment and health for or restore the capabilities of people with dis- people claiming the Employment and Support abilities so they can participate in the competi- Allowance. It consists of mandatory work- tive labour market. The services usually relate related interviews and a range of services to to job training, counselling, and placement. help disabled people and those with health con- For example, in Thailand the Redemptorist ditions move into work. Personal advisers offer Vocational School for the Disabled offers job help in finding jobs, work-related training, and placement as well as training in computer skills assistance in managing disabilities or health and business management (121). Mainstream conditions. Early research with a sample of ben- vocational guidance and training programmes eficiaries found that the programme increased are less segregating than dedicated vocational the probability of being employed by 7.4% (116). training programmes. People with disabilities are not a homo- geneous group, and some subgroups require Traditional training and tailored approaches. The problems of impaired mainstream programmes hearing, for instance, will differ from those of In OECD countries there is insufficient invest- being blind (117, 118). Particular issues arise for ment in rehabilitation and employment meas- people who have intermittent or episodic prob- ures, and take-up is low (122). In developing lems, such those with mental health difficulties. countries, vocational services tend to consist of Research has found considerable differ- small rehabilitation and training programmes ences between countries in the proportion of (9, 123). Because of their high costs, such pro- people who return to work after the onset of dis- grammes fail to reach a significant proportion ability, with figures in one study ranging from of their target group (124). Furthermore, tra- 40% to 70% (119). Organizations with estab- ditional training programmes – focused on lished disability management programmes a limited range of specialized technical skills have improved the rates of return to work (see and provided in segregated centres – have not Box 8.3) (120). put many people with disabilities into jobs (38, Box 8.3. Returning to work in Malaysia Social security programmes help people with disabilities engage in community and working life. Whether financed by social insurance or through tax-funded benefits, cash payments and in-kind benefits can provide a means of contributing to society. This, in turn, will create more positive attitudes towards people with disabilities and make society more “disability-inclusive”. In Malaysia, following a year-long pilot scheme in 2005, the Social Security Organization is extending its Return to Work programme throughout the country, combining financial support through social security payments with physical and vocational rehabilitation to help workers with employment-related injuries and diseases return to work. A pilot demonstrated that, with rehabilitation, 60% of those injured in the workplace can return to full employment. The programme works with rehabilitation service providers and has established links with several large employ- ers to provide work for participants. A case manager coordinates the rehabilitation with the injured person and his or her family, employer, and doctor – bringing in professionals from different disciplines as needed, such as physical therapy, occupational therapy, counselling, and pain management. 245 World report on disability 125). Such programmes are typically in urban still in hospital – has increased the rates of areas, often distant from where people with return to further education and training disabilities live. The trades they teach – such or work (129). as carpentry and shoemaking – are frequently ■ Mentoring. In the United States collabora- not responsive to changes in the labour market. tion between the government and private In addition, an underlying assumption of these enterprise provides summer internships to programmes tends to be that people with dis- hundreds of young people with disabilities. abilities are capable of only a limited number This mentoring project – raising career of occupations. awareness and building skills – has in many In South Africa, however, a mainstreaming cases led to permanent placements at the approach, under the country’s National Skills employers offering the internships (130). Strategy, Sectoral Education and Training ■ Continuity of training. Being able to keep Authorities requires the allocation of 4% of in touch with rehabilitation centres, and to traineeships to people with disabilities (111). build on earlier training, is important. The Leprosy Mission in India sponsors associa- Alternative forms of training tions of alumni from its vocational reha- Apart from imparting technical skills, recent bilitation centres, enabling those trained programmes have also concentrated on improv- to keep in touch with other graduates and ing the self-confidence of trainees and raising with the training centres (see Box 8.4). awareness of the wider business environment. Promoting employment and the develop- The Persons with Disabilities’ Self-Initiative ment of livelihoods is often undertaken through to Development programme in Bangladesh community-based rehabilitation (CBR), dis- helps people with disabilities form self-help cussed throughout this Report. Interventions organizations within the community (126). In typically aim to: Soweto, South Africa, training in competen- ■ teach skills for developing income-generat- cies forms part of an entrepreneurship training ing opportunities and for being employed; programme, and the survival rate of businesses ■ impart knowledge about the labour market; has been high (127). ■ shape appropriate attitudes to work; Recent initiatives to provide alternative ■ provide guidance on developing relation- forms of training show promise: ships with employers to find a job or receive ■ Community-based vocational rehabili- in-job training. tation. Trainers are local artisans who provide trainees with the skills to become CBR also seeks to create support in the self-reliant in the community. In Nigeria community for including people with disabili- participants are given training as well as ties. A resource from the ILO offers examples help with microfinance, so that they can be of good practices on CBR and employment, self-employed when they have finished the together with practical suggestions for skills programme (125). development, self-employment, and access to ■ Peer training. In Cambodia a successful the job market (52). home-based peer-training programme Despite these promising initiatives, the encourages village entrepreneurs in rural evaluation of vocational rehabilitation is diffi- villages to teach technical and business cult and, in general, its effects are still largely skills to people with disabilities (128). unknown. The evaluation is made more difficult ■ Early interventions. In Australia a project by the fact that disability benefits often act as providing computer training to people disincentives to work, and by the wide range of with recent spinal cord injuries – while different services provided to individuals (75). 246 Chapter 8 Work and employment Box 8.4. Vocational training at the Leprosy Mission The Leprosy Mission in India runs vocational training centres for young people affected by leprosy. Students are taught a wide range of technical skills – including car repairing, tailoring, welding, electronics, radio and television repairing, stenography, silk production, offset printing, and computing. The qualifications obtained by those graduating are officially recognized by the government. The schools also teach other types of skills, such as business management and core life skills. Core life skills are taught through the timetable and activities of the centres, nurtured through the examples of the staff. The aims are to develop: ■ personal skills – including those related to self-esteem, positive thinking, motivation, goal setting, problem solving, decision-making, time management, and stress management; ■ coping mechanisms – including how to deal with one’s sexuality, shyness, loneliness, depression, fear, anger, alcoholism, failure, criticism, and conflict; ■ fitness for a job – including leadership skills, team work skills, and career planning. In interviews and focus group discussions, former students were asked to name the most important thing they had learned from their training. No one mentioned technical skills. Instead, they mentioned discipline, punctuality, obedience, personality development, self-confidence, responsibility, and communication skills. The Leprosy Mission’s training centres have a job placement rate of more than 95%. Among the reasons for the success are that the Mission has active job placement officers with good relations with local employers, who know that graduates from the Mission’s training centres will be of a high standard, and the training centres have a strong alumni association that keeps graduates in touch with each other and with their training centre. It identified successful examples of income gen- Self-employment and microfinance eration schemes from Jamaica, the Philippines, and Thailand (134). Funding to help start small businesses can Many people with disabilities have few assets provide an alternative to scarce formal to secure loans, and may have lived in poverty for employment (131, 132). For self-employment years. Microfinance programmes are in principle programmes for people with disabilities to open to all, including disabled people. But anecdo- succeed, however, marketing skills, access to tal evidence suggests that few people with disabili- credit, and long-term support and follow-up ties benefit from such schemes. Some microfinance are needed (133). The International Study on programmes have been set up by disability NGOs Income Generation Strategies analysed 81 self- and others target people with disabilities, but more directed employment projects and highlighted evidence is needed on their effectiveness. four success factors: ■ a targeted microfinance programme in ■ a self-directed identity (self-confidence, Ethiopia had a positive impact on the lives energy, risk-taking); of women who became disabled during ■ relevant knowledge (literacy and numer- war (135); acy, technical skills, business skills); ■ Handicap International evaluated 43 pro- ■ availability of resources (advice, capital, jects and found that targeted microfinance marketing assistance); schemes were beneficial and that almost ■ an enabling social and policy environment two thirds of them were sustainable (132); (political support, community develop- ■ a disability organization typically faces dif- ment, disability rights). ficulties in developing and administering 247 World report on disability microfinance programmes, and targeted beneficiary rates over the past decade, which microfinance programmes set up by a dis- now represents around 6% of working age popu- ability organization can reach only a small lation (2, 141). Disability benefits have become number of people with disabilities (136). a benefit of last resort because: unemployment benefits are harder to access, early retirement A review of the literature found obstacles schemes have been phased out, and low-skilled in mainstream microfinance, so provisional workers face labour market disadvantages (2). schemes run by NGOs and disabled people’s Spending on disability benefits is an increas- organizations can help, because they give rise ing burden on public finances, rising to as to social inclusion, participation, and empow- much as 4–5% of GDP in countries such as the erment. But both approaches are needed to Netherlands, Norway, and Sweden. People with achieve wider coverage and sustainability, given mental health difficulties make up the majority that microfinance has great social and economic of claims in most countries. People almost never impact for persons with disabilities (137). leave disability benefits for a job (2). System reform to replace passive benefits Social protection with active labour market programmes can make a difference. Evidence from Hungary, Long-term disability benefits can provide dis- Italy, the Netherlands, and Poland suggests incentives for people to seek employment and that tighter obligations for employers to pro- return to work (2, 138, 139). This is especially vide occupational health services and to sup- the case for those who are less skilled or whose port reintegration, together with stronger work jobs, if they were seeking them, would be lower incentives for workers and better employment paying. One reason is that the benefit provides supports, can help disability beneficiaries into a regular income – even though small – that work (2). the person can rely on. Loss of this regular pay- The work disincentives of benefit pro- ment and reliance on menial, low-paid work grammes, together with the common percep- may result in no regular income and little sense tion that disability is necessarily an obstacle to of security (34). work, can be significant social problems (38). So But social assistance benefits can also the status of disability should be independent of have positive effects on employment for people the work and income situation. Disability should with disabilities. Returning to work after dis- be recognized as a health condition, interacting ability may involve a period of unemploy- with contextual factors, and should be distinct ment and income insecurity. Social assistance from eligibility for and receipt of benefits, just programmes therefore need to take this into as it should not automatically be treated as an account when planning the transitional phases obstacle to work (38, 142). Assessment should away from and back onto benefits. Such transi- focus on the capacity for work, not disability. tions should be factored into the benefit pro- Guidance for doctors should emphasize the grammes so that people feel an incentive to value and possibility of work and keep sickness work, while at the same time being secure in the absence as short as possible (2). knowledge that a benefit is still available should To ensure that social protection for people they not succeed (73). with disabilities does not operate as a disincen- The growth in disability benefit costs and the tive to seeking employment, one policy option low employment rates for people with disabili- is to separate the income support element from ties are concerns for policy-makers in develop- the element to compensate for the extra costs ing countries (2, 7, 35, 140). In OECD countries incurred by people with disabilities. Temporary there has been substantial growth in disability entitlements plus cost of disability components 248 Chapter 8 Work and employment irrespective of work status, more flexible in- Working to change attitudes work payments, and options for putting ben- efits on hold while trying work are preferred Many disabled people’s organizations already options (122, 141). attempt to change perceptions on disability at Time-limited disability benefits may the community level. Anecdotal evidence sug- be another way to increase employment gests that employing a disabled person in itself for disabled people, with particular impor- changes attitudes within that workplace (54, tance for younger people (2). Germany, the 145). In the United States, companies already Netherlands, and Norway recently adopted employing a disabled person are more likely to such programmes to encourage the return to employ other disabled people (1). work (143). These schemes accept the fact that Many awareness campaigns have targeted some people have severe disabilities that will specific conditions: last for a longer period, but recognize that, ■ the BBC World Service Trust has conducted with intervention, returning to work is pos- a large-scale awareness campaign in India sible. The limited duration of the benefit is in to counter misconceptions on leprosy; itself an incentive for people to return to work ■ in New Zealand the organization Like by the time benefits end. A critical factor in Minds has worked to change public atti- making the limited duration of the benefit an tudes to people with mental health condi- incentive to return to work, however, is the tions (146); way in which the time-limited programme is ■ various initiatives have tackled the myths, linked to the permanent programme. If the ignorance, and fear often surrounding transition to the permanent programme is HIV/AIDS (147). smooth and expected by recipients, the incen- tive to return to the labour force is reduced. Light is a public electricity utility in Rio But there is no firm evidence on the effective- de Janeiro, Brazil, employing disabled people ness of time-limited benefits in encouraging and generating positive publicity for its the return to work. actions (148). On the reverse of the company’s Another priority is making sure it pays to be monthly electricity bill is a picture of a wheel- in work (2). The United Kingdom has recently chair, with the message: been experimenting with ways outside the traditional disability benefit system to encour- “At Light, the number of workers age people with disabilities to work (139). A with disabilities is greater than that Working Tax Credit is paid to a range of lower required by law. The reason is simple – income employed and self-employed people, for us, the most important thing is to administered by the taxation authorities. A have valuable people.” person qualifies for the disability element of the Working Tax Credit if he or she works at least In the United Kingdom the Employers’ 16 hours a week, has a disability that puts them Forum on Disability has developed innova- at a disadvantage of finding a job, or receives tive approaches for changing perceptions of a qualifying benefit such as the long-term dis- disability (see Box  8.5). Similar initiatives ability pension. The idea is to encourage work have been developed in Australia, Germany, among low-income households with a member South Africa, Sri Lanka, and the United with disabilities. The credit, introduced in April States. More data are needed to understand 2003, has proved complex to administer. But an which interventions can shift embedded early evaluation suggests that it is encouraging attitudes on disability and best promote people to enter work and reducing previous dis- positive attitudes about disability in the incentives for young people to seek work (144). workplace. 249 World report on disability Box 8.5. The Employers’ Forum on Disability The Employers’ Forum on Disability (EFD) was the world’s first employers’ organization to promote equality for people with disabilities. Pioneered by the business community in the United Kingdom in the late 1980s, it is a non- profit organization, funded entirely by its 400 employer members, including more than 100 global corporations. EFD does not help disabled people directly. Instead, it makes it easier for employers to employ and do business with disabled people. It encourages businesses to view disability in terms of equal opportunities, capability, and investment in human potential – rather than as quotas, medicine, and incapacity. In the United Kingdom, employers campaigned alongside the disability movement to replace the previous quota system – which required employers to hire people because they were disabled – with anti-discrimination laws, requiring employers to treat disabled people fairly. EFD played an important role in this campaign, with its mem- bers showing the way forward by implementing the provisions of the proposed anti-discrimination legislation before it was introduced. EFD also ran the first leadership programme for disabled people and has worked closely with a group of disabled associates who act as advisors and ambassadors worldwide. Two of these advisors sit on the EFD board. An important achievement of EFD was the creation of a benchmark, the Disability Standard, which sets a per- formance standard for businesses with regard to disability, reported every two years. In 2007 most companies in the top 25% of businesses, as assessed by the Disability Standard benchmark, had been EFD members for at least five years. To introduce similar initiatives, EFD has worked with employer networks in Argentina, Australia, Brazil, Canada, Germany, the Russian Federation, Spain, Sri Lanka, and Viet Nam. The EFD model has been welcomed as an alternative to the traditional approach of seeing the employer as the problem. EFD has also pioneered a systematic approach to targeted recruitment, enabling employers and providers in the United Kingdom to bring thousands into work. The employment rate of people with disabilities in the United Kingdom has risen by 8 percentage points since 1991. While no single factor is responsible for this increase, EFD has played a significant part. Sources (149–151). People with disabilities must also be ena- bled to progress up the career ladder (152). Conclusion and Evidence suggests that people with disabilities recommendations may lack opportunities for promotion, because their employers are reluctant to place them in Almost all jobs can be performed productively roles where they manage others (153). In the by someone with a disability, and given the United States greater knowledge about legis- right environment, most people with disabili- lation on disability employment is associated ties can be productive. But working age per- with more positive attitudes towards the rights sons with disabilities experience significantly of disabled people in the workplace (154). lower employment rates and much higher Trades unions also have a role in improv- rates of unemployment than persons without ing the employment conditions of people with disabilities. disabilities (155), particularly in the public This is due to many factors, including lack of sector. Trades unions have a record of concern access to education and vocational rehabilitation about occupational health and safety, and more and training, lack of access to financial resources, recently have started to make the prevention of disincentives created by disability benefits, the disability and issues of accommodation part of inaccessibility of the workplace, and employers’ their bargaining agenda (156). perceptions of disability and disabled people. 250 Chapter 8 Work and employment In improving labour market opportuni- ■ Design safety net interventions to promote ties for people with disabilities many stake- labour market inclusion of disabled people holders have a role, including government, by including assistance and support services employers, disabled people’s organizations, or covering the additional costs incurred by and trade unions. The Report’s recommenda- those who enter employment – such as the tions to improve access to labour markets for cost of travel to work and of equipment. people with disabilities are presented here by ■ Adjust disability assessment systems so key actors. that they assess the positive aspects of functioning (as opposed to disability) and Governments capacity to work. ■ Monitor and evaluate labour market pro- Laws and regulations grammes aimed at facilitating and increas- ■ Enact and enforce effective anti-discrimi- ing employment of persons with disabilities nation legislation. and scale up those that deliver results with ■ Ensure that public policies are harmonized focus on inclusive, not segregated solutions. to provide incentives and support for indi- ■ Provide adequate and sustainable funding viduals with disabilities to seek employ- for training programmes, to build a skilled ment, and for employers to hire them. workforce of people with disabilities. Changing attitudes Data collection ■ Promote awareness among employers of ■ Include persons with disabilities in labour their duty not to discriminate, and of the market data collection activities, for means available to them to support the instance labour force survey. employment of people with disabilities. ■ Use internationally agreed (for example ILO) ■ Instil a belief among the public that labour market indicators to measure and people with disabilities can work, given monitor the labour market status and liveli- the proper support. hood experiences of people with disabilities. ■ As employers, lead by example in promot- ing the employment of disabled people in Employers the public sector. ■ Hire people with disabilities, making rea- Public programmes sonable accommodations available where ■ Make mainstream vocational guidance and needed. training programmes accessible to people ■ Set up disability management programmes with disabilities. to support the return to work of employees ■ Make mainstream employment services who become disabled. available to persons with disabilities on an ■ Develop partnerships with local employ- equal basis with other job seekers. ment agencies, educational institutions, ■ Develop services tailored to individual and skill training programmes, and social community needs, rather than services of a enterprises to build a skilled workforce that “one-size-fits-all” nature. includes people with disabilities. ■ Ensure that mainstream social protection ■ Ensure that all supervisors and human programmes include people with disabili- resource personnel are acquainted with the ties, while at the same time supporting their requirements for accommodation and non- return to work, and not creating disincentives discrimination with regard to individuals to those seeking work or returning to work. with disabilities. 251 World report on disability ■ For larger businesses, aim to become model enable people with disabilities to make a employers of people with disabilities. decent living. ■ Where the informal economy is predomi- Other organizations: NGOs nant, promote micro-enterprises and self- including disabled people’s employment for people with disabilities. ■ For microfinance institutions, improve organizations, microfinance access to microfinance for persons with institutions, and trade unions disabilities through better outreach, accessible information and customized ■ For organizations providing mainstream credit conditions. training opportunities, include people ■ Support the development of networks of with disabilities. people with disabilities that can campaign ■ Provide targeted support when mainstream for the rights of people with disabilities. opportunities are not available. ■ For labour unions, make disability issues, ■ Support community-based rehabilitation, including accommodations, part of their to enhance the development of skills and bargaining agendas. 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Scandinavian Journal of Disability Research, 2010,12:19-31. doi:10.1080/15017410902909118 154. Hernandez B, Keys C, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000,66:4-16. 155. Shrey D et al. Disability management best practices and joint labour-management collaboration. International Journal of Disability Management Research, 2006,1:52-63. doi:10.1375/jdmr.1.1.52 156. Jodoin S, Harder H. Strategies to enhance labour-management cooperation in the development of disability man- agement programs. International Journal of Disability, Community, and Rehabilitation, 2004, 3 (http://www.ijdcr.ca/ VOL03_04_CAN/articles/jodoin.shtml, accessed 23 June 2009). 257 Chapter 9 9 The way forward: recommendations Disability is part of the human condition. Almost everyone will be tem- porarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning. Disability is complex and the interventions required to overcome dis- ability disadvantage are multiple, systemic, and will vary depending on context. The United Nations Convention on the Rights of Persons with Disabilities (CRPD), adopted in 2006, aims to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all per- sons with disabilities, and to promote respect for their inherent dignity” (1). It reflects the major shift in global understanding and responses towards dis- ability. The World report on disability has assembled the best available scien- tific information on disability so as to understand and help improve the lives of people with disabilities and facilitate the implementation of the CRPD. This chapter summarizes the Report’s findings about what is known about disability and makes final recommendations to assist stakeholders in overcoming the barriers that people with disabilities experience. Disability: a global concern What do we know about people with disabilities? Higher estimates of prevalence More than a billion people are estimated to live with some form of disability, or about 15% of the world’s population (based on 2010 global population estimates). This is higher than previous World Health Organization esti- mates, which date from the 1970s and suggested a figure of around 10%. According to the World Health Survey around 785 million (15.6%) per- sons 15 years and older live with a disability, while the Global Burden of Disease estimates a figure of around 975 million (19.4%) persons. Of these, the World Health Survey estimates that 110 million people (2.2%) have very significant difficulties in functioning, while the Global Burden of Disease estimates that 190 million (3.8%) have “severe disability” – the equivalent of disability inferred for conditions such as quadriplegia, severe depression, 261 World report on disability 2011 or blindness. Only the Global Burden of Disease educational qualifications are at an increased measures childhood disability (0–14 years) risk of disability. Data from selected countries which is estimated to be 95 million (5.1%) chil- show that children from poorer households dren of which 13 million (0.7%) have “severe and those in ethnic minority groups are at sig- disability”. nificantly higher risk of disability than other children. Growing numbers The number of people with disabilities is grow- What are the disabling barriers? ing. There is a higher risk of disability at older ages, and national populations are growing The CRPD and the International Classification older at unprecedented rates. There is also a of Functioning, Disability and Health (ICF) global increase in chronic health conditions, both highlight the environmental factors that such as diabetes, cardiovascular diseases, and restrict participation for people with disabili- mental disorders, which will influence the ties. This Report has documented widespread nature and prevalence of disability. Patterns of evidence of barriers, including the following. disability in a particular country are influenced ■ Inadequate policies and standards. Policy by trends in health conditions and trends in design does not always take into account environmental and other factors – such as road the needs of people with disabilities, or traffic crashes, natural disasters, conflict, diet, existing policies and standards are not and substance abuse. enforced. Examples include a lack of clear policy of inclusive education, a lack Diverse experiences of enforceable access standards in physi- The disability experience resulting from the inter- cal environments, and the low priority action of health conditions, personal factors, and accorded to rehabilitation. environmental factors varies greatly. While disa- ■ Negative attitudes. Beliefs and prejudices bility correlates with disadvantage, not all people constitute barriers when health-care work- with disabilities are equally disadvantaged. ers cannot see past the disability, teachers Women with disabilities experience gender dis- do not see the value in teaching children crimination as well as disabling barriers. School with disabilities, employers discriminate enrolment rates also differ among impairments, against people with disabilities, and family with children with physical impairment gener- members have low expectations of their ally faring better than those with intellectual or relatives with disabilities. sensory impairments. Those most excluded from ■ Lack of provision of services. People with the labour market are often those with mental disabilities are particularly vulnerable to health difficulties or intellectual impairments. deficiencies in services such as health care, People with more severe impairments often rehabilitation, or support and assistance. experience greater disadvantage. ■ Problems with service delivery. Issues such as poor coordination among services, Vulnerable populations inadequate staffing, staff competencies, and Disability disproportionately affects vulnerable training affect the quality and adequacy of populations. There is a higher disability preva- services for persons with disabilities. lence in lower-income countries than in higher- ■ Inadequate funding. Resources allocated income countries. People from the poorest to implementing policies and plans are wealth quintile, women, and older people have often inadequate. Strategy papers on pov- a higher prevalence of disability. People who erty reduction, for instance, may mention have a low income, are out of work, or have low disability but without considering funding. 262 Chapter 9 The way forward: recommendations ■ Lack of accessibility. Built environments ■ They are less economically active. People (including public accommodations) trans- with disabilities have lower employ- port systems and information are often ment rates than people without disabili- inaccessible. Lack of access to transport is ties. Where people with disabilities are a frequent reason for a person with a dis- employed, they commonly earn less than ability being discouraged from seeking their counterparts without disabilities. work or prevented from accessing health ■ They experience higher rates of poverty. care. Even in countries with laws on acces- Households with a person with a dis- sibility, compliance in public buildings is ability have higher rates of poverty than often very low. The communication needs households without disabled members. of people with disabilities are often unmet. As a group and across settings, people Information is frequently unavailable in with disabilities have worse living condi- accessible formats, and some people with tions and fewer assets. Poverty may lead disabilities are unable to access basic infor- to disability, through malnutrition, poor mation and communication technologies health care, and dangerous working or such as telephones and television. living conditions. Disability may lead to ■ Lack of consultation and involvement. poverty through lost earnings, due to lack Often people with disabilities are excluded of employment or underemployment, and from decision-making in matters directly through the additional costs of living with affecting their lives. disability, such as extra medical, housing, ■ Lack of data and evidence. A lack of rigor- and transport costs. ous and comparable data on disability and ■ They cannot always live independently or evidence on programmes that work often participate fully in community activities. impedes understanding and action. Reliance on institutional solutions, lack of community living, inaccessible transport How are the lives of people and other public facilities, and negative atti- with disabilities affected? tudes leave people with disabilities depend- ent on others and isolated from mainstream These barriers contribute to the disadvantages social, cultural, and political opportunities. experienced by people with disabilities, such as the following. ■ They have poor health outcomes. Recommendations Depending on the group and setting, per- sons with disabilities may experience greater The evidence in this Report suggests that many vulnerability to preventable secondary of the barriers people with disabilities face are conditions and co-morbidities, untreated avoidable and the disadvantages associated with mental health conditions, poor oral health, disability can be overcome. The following nine higher rates of HIV infection, higher rates recommendations for action are cross-cutting of obesity, and premature mortality. and guided by the more specific recommenda- ■ They have lower educational achieve- tions at the end of each chapter. ments. Children with disabilities are less Implementing the recommendations likely to start school than their peers with- requires involving different sectors – health, out disabilities. They also have lower rates education, social protection, labour, transport, of staying in school and of being promoted, housing – and different actors – governments, as well as lower transition rates to post- civil society organizations (including disa- school education. bled people’s organizations), professionals, the 263 World report on disability Box 9.1. An example of inclusive international cooperation In November 2008 the Australian Government launched its strategy “Development for all: towards a disability- inclusive Australian aid program”. The strategy marks a significant change in the way Australia’s aid is designed and delivered. Development for All is about improving the reach and effectiveness of development assistance by ensuring that people with disabilities are included, contribute and benefit equally from development efforts. In preparing the strategy AusAID, the Australian government’s development aid agency, conducted consultations in most of the developing countries where AusAID works, involving people with disabilities, their families and caregivers, government representatives, nongovernmental organizations, and service providers. Almost 500 written submissions were received in the process. During the consultations overseas-based AusAID staff – often with little experience of relating to people with disabilities – were supported to engage with local disabled people’s organizations. The direct involvement of AusAID staff was an important step in commencing the process of building institutional understanding of the importance of disability-inclusive development. Many came away better informed about disability issues and more confident about spending time with people with disabilities. Two years into implementation, there are strong signs that the strategy is working: ■ People with disabilities are more visible and taking a central role in decision- making, ensuring that Australia’s development policies and programmes are shaped to better take account of their requirements. ■ Australia’s support is bolstering partner Government’s efforts, such as in Papua New Guinea, Cambodia and Timor- Leste, towards more equitable national development that benefits all citizens, including people with disability. ■ Investments in leadership by people with disabilities, together with advocacy by Australian leaders internation- ally, is helping to increase the priority and resources for inclusive development globally. ■ AusAID’s processes, systems and information about the aid programme are more accessible to people with disabilities. Key programme areas such as scholarships have revised guidelines resulting in increased number of scholars with disabilities. The strategy takes a rights-based approach, is sensitive to the diversity of people with disabilities, gender issues, and focuses on children with disabilities. private sector, and people with disabilities and and should be met in mainstream programmes their families. and services. Mainstreaming not only fulfils It is essential that countries tailor their the human rights of persons with disabilities, actions to their specific contexts. Where coun- it is also more effective. tries are limited by resource constraints, some Mainstreaming is the process by which of the priority actions, particularly those requir- governments and other stakeholders ensure ing technical assistance and capacity-building, that persons with disabilities participate can be included within the framework of inter- equally with others in any activity and service national cooperation (see Box 9.1). intended for the general public, such as educa- tion, health, employment, and social services. Recommendation 1: Enable Barriers to participation need to be identified access to all mainstream and removed, possibly requiring changes to laws, policies, institutions, and environments. policies, systems and services Mainstreaming requires a commitment at all levels, and needs to be considered across all People with disabilities have ordinary needs sectors and built into new and existing legisla- – for health and well-being, for economic and tion, standards, policies, strategies, and plans. social security, to learn and develop skills, and Adopting universal design and implementing to live in their communities. These needs can reasonable accommodations are two important 264 Chapter 9 The way forward: recommendations strategies. Mainstreaming also requires effec- disability strategy sets out a consolidated and tive planning, adequate human resources, and comprehensive long-term vision for improving sufficient financial investment – accompanied the well-being of persons with disabilities and by specific measures such as targeted pro- should cover both mainstream policy and pro- grammes and services (see Recommendation 2) gramme areas and specific services for persons to ensure that the diverse needs of people with with disabilities. disabilities are adequately met. The development, implementation, and monitoring of a national strategy should bring Recommendation 2: Invest in together a broad range of stakeholders including specific programmes and services relevant government ministries, nongovernmen- tal organizations, professional groups, disabled for people with disabilities people and their representative organizations, the general public, and the private sector. In addition to mainstream services, some people The strategy and action plan should be with disabilities may require access to specific informed by a situation analysis, taking into measures, such as rehabilitation, support ser- account such factors as the prevalence of vices, or training. Rehabilitation – including disability, needs for services, social and eco- assistive technologies such as wheelchairs, hear- nomic status, effectiveness and gaps in cur- ing aids, and white canes – improves function- rent services, and environmental and social ing and independence. A range of well-regulated barriers. The strategy should establish pri- assistance and support services in the commu- orities and have measurable outcomes. The nity can meet needs for care, enabling people plan of action operationalizes the strategy in to live independently and to participate in the short and medium terms by laying out con- economic, social, and cultural lives of their crete actions and timelines for implementa- communities. Vocational rehabilitation and tion, defining targets, assigning responsible training can open labour market opportunities. agencies, and planning and allocating needed While there is a need for more services, there resources. is also a need for better, more accessible, flexible, Mechanisms are needed to make it clear integrated, and well-coordinated multidiscipli- where the responsibility lies for coordination, nary services, particularly at times of transi- decision-making, regular monitoring and tion such as between child and adult services. reporting, and control of resources. Existing programmes and services need to be reviewed to assess their performance and make Recommendation 4: Involve changes to improve their coverage, effectiveness, people with disabilities and efficiency. The changes should be based on sound evidence, appropriate in terms of culture People with disabilities often have unique and other local contexts, and tested locally. insights about their disability and their situ- ation. In formulating and implementing poli- Recommendation 3: Adopt a cies, laws, and services, people with disabilities national disability strategy should be consulted and actively involved. Disabled people’s organizations may need and plan of action capacity-building and support to empower people with disabilities and advocate for their While disability should be a part of all devel- needs. When suitably developed and funded, opment strategies and action plans, it is also they can also play a role in service delivery – recommended that a national disability strat- for example, in information provision, peer egy and plan of action be adopted. A national support, and independent living. 265 World report on disability At an individual level, persons with dis- Recommendation 6: Provide abilities are entitled to control over their lives adequate funding and and therefore need to be consulted on issues that concern them directly – whether in health, improve affordability education, rehabilitation, or community living. Supported decision-making may be necessary Existing public services for people with dis- to enable some individuals to communicate abilities are often inadequately funded, affect- their needs and choices. ing the availability and quality of such services. Adequate and sustainable funding of publicly Recommendation 5: Improve provided services is needed to ensure that they human resource capacity reach all targeted beneficiaries and that good quality services are provided. Contracting out The attitudes and knowledge of people work- service provision, fostering public-private part- ing in, for example, education, health care, nerships, notably with not-for profit organiza- rehabilitation, social protection, labour, law tions, and devolving budgets to persons with enforcement, and the media are particularly disabilities for consumer-directed care can important for ensuring non-discrimination contribute to better service provision. and participation. During the development of the national Human resource capacity can be improved disability strategy and related action plans, the through effective education, training, and affordability and sustainability of the proposed recruitment. A review of the knowledge and measures should be considered and adequately competencies of staff in relevant areas can pro- funded through relevant budgets. Programme vide a starting point for developing appropriate costs and outcomes should be monitored and measures to improve them. Relevant training evaluated, so that more cost-effective solutions on disability, which incorporates human rights are developed and implemented. principles, should be integrated into current Often people with disabilities and their curricula and accreditation programmes. families have excessive out-of-pocket expenses. In-service training should be provided to cur- To improve the affordability of goods and ser- rent practitioners providing and managing ser- vices for people with disabilities and to offset vices. For example, strengthening the capacity the extra costs associated with disability, par- of primary health care workers, and ensuring ticularly for poor and vulnerable persons with availability of specialist staff where required, disabilities, consideration should be given to contribute to effective and affordable health expanding health and social insurance cover- care for people with disabilities. age, ensuring that people with disabilities have Many countries have too few staff work- equal access to public social services, ensur- ing in fields such as rehabilitation and special ing that poor and vulnerable people with dis- education. Developing standards in training abilities benefit from poverty-targeted safety for different types and levels of rehabilitation net programmes, and introducing fee-waivers, personnel can assist in addressing resource reduced transport fares, and reduced import gaps. There are also shortages of care workers taxes and duties on assistive technologies. and sign language interpreters. Measures to improve staff retention may be relevant in some settings and sectors. 266 Chapter 9 The way forward: recommendations Recommendation 7: Increase appropriate services for people with disabili- public awareness and ties. As a first step, national population census data can be collected in line with recommen- understanding of disability dations from the United Nations Washington Group on Disability and the United Nations Mutual respect and understanding contrib- Statistical Commission. A cost-effective and ute to an inclusive society. Therefore it is efficient approach is to include disability ques- vital to improve public understanding of dis- tions – or a disability module – in existing ability, confront negative perceptions, and sample surveys such as a national household represent disability fairly. For example, edu- survey, national health survey, general social cation authorities should ensure that schools survey, or labour force survey. Data need to are inclusive and have an ethos of valuing be disaggregated by population features, such diversity. Employers should be encouraged to as age, sex, race, and socioeconomic status, accept their responsibilities towards staff with to uncover patterns, trends, and information disabilities. about subgroups of persons with disabilities. Collecting information on knowledge, Dedicated disability surveys can also gain beliefs and attitudes about disability can help more comprehensive information on disability identify gaps in public understanding that characteristics, such as prevalence, health con- can be bridged through education and public ditions associated with disability, and use of information. Governments, voluntary organi- and need for services including rehabilitation. zations, and professional associations should Administrative data collection can be a useful consider running social marketing campaigns source of information on users and on types, that change attitudes on stigmatized issues such amounts, and cost of services, if standard dis- as HIV, mental illness, and leprosy. Involving ability identifiers are included. the media is vital to the success of these cam- paigns and to ensuring the dissemination of Recommendation 9: Strengthen positive stories about persons with disabilities and support research on disability and their families. Research is essential for increasing public Recommendation 8: Improve understanding about disability issues, inform- disability data collection ing disability policy and programmes, and effi- ciently allocating resources. Internationally, methodologies for collect- This Report recommends several areas for ing data on people with disabilities need to be research on disability including: developed, tested cross-culturally, and applied ■ the impact of environmental factors (poli- consistently. Data need to be standardized and cies, physical environment, attitudes) on internationally comparable for benchmarking disability and how to measure it; and monitoring progress on disability poli- ■ the quality of life and well-being of people cies, and for the implementation of the CRPD with disabilities; nationally and internationally. ■ barriers to mainstream and specific ser- Nationally, disability should be included vices, and what works in overcoming them in data collection. Uniform definitions of dis- in different contexts; ability, based on the ICF, can allow for interna- ■ accessibility and universal design program- tionally comparable data. Understanding the mes appropriate for low-income settings; numbers of people with disabilities and their ■ the interactions among environmental fac- circumstances can improve country efforts tors, health conditions, and disability – and to remove disabling barriers and provide between disability and poverty; 267 World report on disability ■ the cost of disability and the cost–effec- review and revise compliance and enforce- tiveness of public spending on disability ment mechanisms. programmes. ■ Review mainstream and disability-spe- cific policies, systems, and services to Research requires focused investments in identify gaps and barriers and to plan human and technical capacity, particularly in actions to overcome them. low-income and middle-income countries. A ■ Develop a national disability strategy and critical mass of trained researchers on disabil- action plan, establishing clear lines of respon- ity needs to be built. Research skills should be sibility and mechanisms for coordination, strengthened in a range of disciplines, includ- monitoring and reporting across sectors. ing epidemiology, disability studies, health ■ Regulate service provision by introducing and rehabilitation, special education, econom- service standards and by monitoring and ics, sociology, and public policy. International enforcing compliance. learning and research opportunities, linking ■ Allocate adequate resources to existing universities in developing countries with those publicly-funded services and appropriately in high-income and middle-income countries, fund the implementation of the national can also be useful. disability strategy and plan of action. ■ Adopt national accessibility standards and ensure compliance in new buildings, Conclusion in transport, and in information and communication. The CRPD established an agenda for change. ■ Introduce measures to ensure that people This World report on disability has documented with disabilities are protected from poverty the current situation for people with disabili- and benefit adequately from mainstream ties. It has highlighted gaps in knowledge and poverty alleviation programmes. stressed the need for further research and ■ Include disability in national data collec- policy development. It has also provided rec- tion systems and provide disability-disag- ommendations for action towards achieving a gregated data wherever possible. society that is inclusive and enabling, providing ■ Implement communication campaigns equal opportunities for each person with a dis- to increase public knowledge and under- ability to fulfil their potential. standing of disability. ■ Establish channels for people with disabili- Translating recommendations ties and third parties to lodge complaints into action on human rights issues and laws that are not implemented or enforced. To implement the recommendations, strong commitment and actions are required from a United Nations agencies and develop- broad range of stakeholders. While national ment organizations can: governments have the most significant role, ■ Include disability in development aid pro- other players also have important roles. The fol- grammes, using the twin-track approach lowing highlights some of the actions that the (mainstreaming and targeted). various stakeholders can take. ■ Exchange information and coordinate Governments can: actions – to agree on priorities for initia- ■ Review and revise existing legislation and tives to learn lessons and to reduce duplica- policies for consistency with the CRPD; tion of effort. 268 Chapter 9 The way forward: recommendations ■ Provide technical assistance to countries to ■ Develop individual service plans in con- build capacity and strengthen existing pol- sultation with disabled people, and their icies, systems and services – for example, families where necessary. by sharing good and promising practices. ■ Introduce case management, referral sys- ■ Contribute to the development of inter- tems, and electronic record-keeping to nationally comparable research method- coordinate and integrate service provision. ologies for collecting and analysing data ■ Ensure that people with disabilities are relating to people with disabilities. informed of their rights and the mecha- ■ Regularly include relevant disability data nisms for complaints. into statistical publications. Academic institutions can: Disabled people’s organizations can: ■ Remove barriers to the recruitment and ■ Support people with disabilities to become participation of students and staff with aware of their rights, to live independently, disabilities. and to develop their skills. ■ Ensure that professional training courses ■ Support children with disabilities and include adequate information about dis- their families to ensure inclusion in ability, based on human rights principles. education. ■ Conduct research on the lives of persons ■ Represent the views of their constituency to with disabilities and on disabling barri- international, national, and local decision- ers, in consultation with disabled people’s makers and service providers, and advo- organizations. cate for their rights. ■ Contribute to the evaluation and moni- The private sector can: toring of services, and collaborate with ■ Promote diversity and inclusion in work- researchers to support applied research ing environments. that can contribute to service development. ■ Facilitate employment of persons with dis- ■ Promote public awareness and under- abilities, ensuring that recruitment is equi- standing by professionals about the rights table, that reasonable accommodations are of persons with disabilities – for example, provided, and that employees who become through campaigning, advocacy, and disa- disabled are supported to return to work. bility-equality training. ■ Remove barriers of access to microfinance, ■ Conduct audits of environments, transport, so that persons with disabilities can develop and other systems and services to promote their own businesses. barrier removal. ■ Develop a range of quality support services for persons with disabilities and their fami- Service providers can: lies at different stages of the life cycle. ■ Carry out access audits, in partnership with ■ Ensure that construction projects, such as local disability groups, to identify physical public accommodations, offices and hous- and information barriers that may exclude ing include adequate access for persons persons with disabilities. with disabilities. ■ Ensure that staff are adequately trained ■ Ensure that ICT products, systems, and about disability, implementing training services are accessible to persons with as required and including service users in disabilities. developing and delivering training. 269 World report on disability Communities can: People with disabilities and their families ■ Challenge and improve their own beliefs can: and attitudes. ■ Support other people with disabilities ■ Protect the rights of persons with disabilities. through peer support, training, informa- ■ Promote the inclusion and participation of tion, and advice. disabled people in their community. ■ Promote the rights of persons with dis- ■ Ensure that community environments abilities within their local communities – are accessible for people with disabilities, for example by conducting access audits, including schools, recreational areas and delivering disability equality training, and cultural facilities. campaigning for human rights. ■ Challenge violence against and bullying of ■ Become involved in awareness-raising and people with disabilities. social marketing campaigns. ■ Participate in forums (international, national, local) to determine priorities for change, to influence policy, and to shape service delivery. ■ Participate in research projects. References 1. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/ disabilities-convention.htm, accessed 10 March 2011). 270 Technical appendix A Estimates of disability prevalence (%) and of years of health lost due to disability (YLD), by country Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 1 Afghanistan 2005 Imp, AL, PR 2.7 (1) 15.3 2 Albania 2008 Imp 3.4 (2) 7.8 3 Algeria 1992 1.2 (3) 8.0 4 Andorra 6.8 5 Angola 14.4 6 Antigua and Barbuda 8.8 7 Argentina 2001 Imp, AL 7.1 (4) 8.7 8 Armenia 7.9 9 Australia 2006 4.4 (5) 2003 20.0 (6) 6.8 10 Austria 2002 Imp, AL, PR 12.8 (7) 6.7 11 Azerbaijan 8.2 12 Bahamas 2000 Imp 4.3 (8) 2001 Imp 5.7 (9) 9.0 13 Bahrain 1991 Imp 0.8 (10) 7.6 14 Bangladesh 31.9 2005 Imp 2.5 (11) 10.1 15 Barbados 2000 Imp 4.6 (12) 8.5 16 Belarus 8.4 17 Belgium 2002 Imp, AL, PR 18.4 (7) 6.9 18 Belize 2000 Imp, AL, PR 5.9 (13) 10.0 19 Benin 2002 Imp 2.5 (14) 1991 1.3 (10) 11.0 21 Bhutan 2005 Imp 3.4 (15) 2000 Imp 3.5 (16) 9.5 22 Bolivia (Plurinational 2001 Imp 3.1 (17) 2001 Imp 3.8 (18) 10.8 State of) 23 Bosnia and Herzegovina 14.6 7.6 24 Botswana 2001 Imp 3.5 (19) 13.8 25 Brazil 18.9 2000 Imp 14.9 (20) 1981 Imp 1.8 (10) 10.1 26 Brunei Darussalam 7.4 27 Bulgaria 7.9 28 Burkina Faso 13.9 12.1 29 Burundi 13.5 continues ... 271 World report on disability ... continued Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 30 Cambodia 2008 1.4 (21) 1999 Imp 2.4 (11) 10.8 31 Cameroon 11.7 32 Canada 2001 Imp, AL, PR 18.5 (22) 2006 Imp, AL, PR 14.3 (23) 6.9 33 Cape Verde 1990 Imp 2.6 (10) 8.1 34 Central African Republic 1988 1.5 (10) 13.1 35 Chad 20.9 13.6 36 Chile 2002 Imp 2.2 (24) 2004 Imp, AL, PR 12.9 (25) 8.1 37 China 2006 Imp 6.4 (26) 7.7 38 Colombia 2005 Imp, AL, PR 6.4 (27) 1991 Imp 5.6 (10) 10.2 39 Comoros 1980 1.7 (10) 10.0 40 Congo 1974 1.1 (10) 11.0 41 Cook Islands 7.7 42 Costa Rica 2000 Imp 5.4 (28) 1998 Imp 7.8 (28) 7.9 43 Côte d’Ivoire 13.8 44 Croatia 13.9 2001 Imp 9.7 (29) 2009 Imp, AL, PR 11.3 (30) 7.4 45 Cuba 2003 Imp 4.2 (31) 2000 Imp 7.0 (31) 8.2 46 Cyprus 1992 AL 6.4 (32) 2002 Imp, AL, PR 12.2 (7) 7.4 47 Czech Republic 11.7 2007 Imp, AL, PR 9.9 (33) 7.0 48 Democratic People’s 9.5 Republic of Korea 49 Democratic Republic of 13.6 the Congo 50 Denmark 2002 Imp, AL, PR 19.9 (7) 7.1 51 Djibouti 10.5 52 Dominica 2002 Imp 6.1 (34) 8.8 53 Dominican Republic 11.1 2002 Imp 4.2 (35) 2007 Imp 2.0 (36) 9.8 54 Ecuador 13.6 2001 Imp 4.6 (37) 2005 Imp, AL, PR 12.1 (37) 9.2 55 Egypt 2006 1.2 (38) 1996 Imp 4.4 (38) 8.6 56 El Salvador 1992 Imp 1.8 (39) 2003 Imp, AL 1.5 (39) 9.8 57 Equatorial Guinea 12.3 58 Eritrea 9.5 59 Estonia 11.0 2000 Imp 7.5 (40) 2008 Imp, AL, PR 9.9 (40) 7.9 60 Ethiopia 17.6 1984 3.8 (10) 11.3 61 Fiji 1996 Imp, AL 13.9 (11) 8.6 62 Finland 5.5 2002 Imp, AL, PR 32.2 (7) 7.2 63 France 6.5 2002 Imp, AL, PR 24.6 (7) 6.8 64 Gabon 11.0 65 Gambia 11.0 66 Georgia 15.6 7.6 67 Germany 2007 Imp 8.4 (41) 2002 Imp, AL, PR 11.2 (7) 6.7 continues ... 272 Technical appendix A ... continued Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 68 Ghana 12.8 11.1 69 Greece 2002 Imp, AL, PR 10.3 (7) 6.3 70 Grenada 8.9 71 Guatemala 2002 Imp 6.2 (42) 2005 Imp, AL, PR 3.7 (42) 10.0 72 Guinea 11.7 73 Guinea-Bissau 12.7 74 Guyana 2002 Imp, AL, PR 2.2 (43) 11.5 75 Haiti 2003 Imp 1.5 (44) 11.7 76 Honduras 2000 Imp 1.8 (45) 2002 Imp, AL, PR 2.6 (46) 9.5 77 Hungary 10.5 2001 Imp 3.1 (47) 2002 Imp, AL, PR 11.4 (7) 7.9 78 Iceland 2008 7.4 (48) 6.0 79 India 24.9 2001 Imp 2.1 (49) 2002 Imp 1.7 (11) 10.5 80 Indonesia 2007 Imp, AL, PR 21.3 (50) 10.4 81 Iran (Islamic Republic of) 2006 Imp 1.5 (51) 9.3 82 Iraq 1977 Imp 0.9 (10) 19.4 83 Ireland 4.3 2006 Imp, AL, PR 9.3 (52) 2006 Imp, AL, PR 18.5 (53) 6.7 84 Israel 15.8 6.2 85 Italy 2002 Imp, AL, PR 6.6 (7) 6.1 86 Jamaica 2001 Imp 6.2 (54) 8.7 87 Japan 2005 5.0 (55) 5.5 88 Jordan 1994 Imp 1.2 (10) 2001 12.6 (56) 7.9 89 Kazakhstan 14.2 2006 3.0 (11) 10.1 90 Kenya 15.2 1989 Imp 0.7 (10) 10.8 91 Kiribati 2004 Imp 3.8 (11) 9.6 92 Kuwait 6.9 93 Kyrgyzstan 2008 Imp, AL, PR 20.2 (57) 9.6 94 Lao People’s Democratic 8.0 2004 8.0 (11) 10.5 Republic 95 Latvia 18.0 2009 5.2 (16) 8.0 96 Lebanon 2002 1.5 (58) 9.1 97 Lesotho 11.4 98 Liberia 1971 0.8 (10) 1997 Imp 16.4 (59) 13.9 99 Libyan Arab Jamahiriya 1984 Imp 1.5 (10) 1995 1.7 (10) 7.8 100 Lithuania 2001 Imp 7.5 (60) 2002 Imp, AL, PR 8.4 (7) 8.0 101 Luxembourg 10.2 2002 Imp, AL, PR 11.7 (7) 6.8 102 Madagascar 2003 Imp, AL 7.5 (61) 10.7 103 Malawi 14.0 1983 2.9 (10) 2004 Imp, AL, PR 10.6 (62) 13.1 104 Malaysia 4.5 2000 0.4 (63) 8.0 105 Maldives 2003 Imp 3.4 (11) 10.2 106 Mali 9.8 1987 2.7 (10) 13.0 continues ... 273 World report on disability ... continued Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 107 Malta 2005 Imp, AL. PR 5.9 (64) 2002 Imp, AL, PR 8.5 (7) 6.3 108 Marshall Islands 1999 Imp 1.6 (65) 8.2 109 Mauritania 24.9 1988 1.5 (10) 11.0 110 Mauritius 13.1 2000 Imp 3.5 (66) 9.1 111 Mexico 7.5 2000 Imp 1.8 (67) 2002 AL. PR 8.8 (68) 8.2 112 Micronesia (Federated 7.0 States of) 113 Monaco 6.5 114 Mongolia 2005 3.5 (11) 9.0 115 Montenegro 7.4 (69) 116 Morocco 32.0 1982 1.1 (10) 2004 5.12 (70) 8.7 117 Mozambique 1997 Imp 1.9 (71) 2009 Imp, AL, PR 6.0 (72) 12.5 118 Myanmar 6.4 1985 Imp 2.0 (73) 2007 Imp 2.0 (16) 9.8 119 Namibia 21.4 2001 Imp 5.0 (74) 2002 Imp, AL, PR 1.6 (75) 10.2 120 Nauru 9.5 121 Nepal 21.7 2001 Imp 0.5 (76) 2001 Imp 1.6 (11) 11.1 122 Netherlands 2002 Imp, AL, PR 25.6 (7) 6.4 123 New Zealand 2001 Imp, AL, PR 20.0 (77) 6.9 124 Nicaragua 2003 Imp, AL, PR 10.3 (78) 8.5 125 Niger 1988 1.3 (10) 13.7 126 Nigeria 1991 0.5 (10) 13.2 127 Niue 8.4 128 Norway 4.3 2002 Imp, AL, PR 16.4 (7) 6.8 129 Oman 2005 0.5 (79) 7.2 130 Pakistan 13.4 1998 Imp 2.5 (80) 9.6 131 Palau 7.8 132 Panama 2000 Imp 1.8 (81) 2005 Imp, AL, PR 11.3 (81) 8.4 133 Papua New Guinea 9.4 134 Paraguay 10.4 2002 Imp 1.1 (82) 2002 Imp, AL 3.0 (82) 9.4 135 Peru 2007 Imp, AL, PR 10.9 (83) 2006 Imp, AL, PR 8.7 (84) 9.4 136 Philippines 28.8 2000 Imp 1.2 (85) 9.2 137 Poland 2002 AL 14.3 (86) 7.3 138 Portugal 11.2 2001 Imp 6.2 (87) 2002 Imp, AL, PR 19.9 (7) 7.0 139 Qatar 1986 0.2 (10) 7.1 140 Republic of Korea 2005 Imp 4.6 (11) 7.6 141 Republic of Moldova 8.6 142 Romania 2009 Imp, AL, PR 19.0 (88) 7.9 143 Russian Federation 16.4 10.0 144 Rwanda 13.3 145 Saint Kitts and Nevis 9.0 continues ... 274 Technical appendix A ... continued Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 146 Saint Lucia 2001 Imp 5.1 (89) 8.7 147 Saint Vincent and the 2001 imp 4.6 (89) 9.0 Grenadines 148 Samoa 2002 3.0 (90) 7.0 149 San Marino 6.2 150 Sao Tome and Principe 1991 4.0 (10) 10.0 151 Saudi Arabia 1996 Imp 4.5 (91) 8.1 152 Senegal 15.5 1988 1.1 (10) 11.3 153 Serbia 2008 Imp, AL, PR 7.4 (92) 7.4 (93) 154 Seychelles 2007 Imp 1.3 (16) 8.8 155 Sierra Leone 2004 2.4 (94) 14.7 156 Singapore 2003 Imp 3.0 (11) 6.6 157 Slovakia 12.1 2002 Imp, AL, PR 8.2 (7) 7.7 158 Slovenia 2002 Imp, AL, PR 19.5 (7) 7.1 159 Solomon Islands 2004 Imp 3.5 (11) 7.9 160 Somalia 14.3 161 South Africa 24.2 2001 Imp, PR 5.0 (95) 1998 Imp, AL, PR 5.9 (96) 12.2 162 Spain 9.5 2008 Imp, AL 8.5 (97) 6.2 163 Sri Lanka 12.9 2001 Imp 1.6 (98) 1986 Imp 2.0 (10) 11.5 164 Sudan 1993 1.6 (10) 1992 1.1 (10) 12.2 165 Suriname 1980 Imp 2.8 (99) 10.1 166 Swaziland 35.9 1986 2.2 (10) 13.0 167 Sweden 19.3 2002 Imp, AL, PR 19.9 (7) 6.5 168 Switzerland 2007 Imp, AL, PR 14.0 (100) 6.2 169 Syrian Arab Republic 1981 1.0 (10) 1993 0.8 (10) 7.7 170 Tajikistan 2007 1.9 (101) 8.7 171 Thailand 2007 Imp, AL, PR 2.9 (102) 9.4 172 The former Yugoslav 7.3 Republic of Macedonia 173 Timor Leste 2002 1.5 (11) 11.0 174 Togo 1970 0.6 (10) 11.4 175 Tonga 2006 2.8 (103) 6.9 176 Trinidad and Tobago 2000 Imp, AL 4.2 (104) 9.2 177 Tunisia 16.3 1994 1.2 (10) 1989 0.9 (10) 7.5 178 Turkey 20.6 2002 Imp, AL 12.3 (105) 7.5 179 Turkmenistan 9.1 180 Tuvalu 8.0 181 Uganda 2002 Imp 3.5 (106) 2006 Imp 7.2 (107) 12.7 182 Ukraine 14.8 8.8 183 United Arab Emirates 10.8 7.3 continues ... 275 World report on disability ... continued Member State Disability Census Disability survey or component in YLDs per 100 prevalence from other surveys persons in WHS, 2002–2004a 2004 Year ICF Prevalence Year ICF Prevalence component component 184 United Kingdom of Great 2001 Imp, AL, PR 17.6 (108) 2002 Imp, AL, PR 27.2 (7) 7.1 Britain and Northern Ireland 185 United Republic of 2008 Imp, AL, PR 7.8 (109) 12.7 Tanzania 186 United States of America 2000 Imp, AL, PR 19.3 (110) 2007 Imp, AL, PR 14.9 (111) 7.9 187 Uruguay 4.6 2004 Imp, AL, PR 7.6 (112) 9.0 188 Uzbekistan 8.0 189 Vanuatu 1999 1.4 (113) 7.6 190 Venezuela (Bolivarian 2001 Imp 4.2 (114) 9.1 Republic of) 191 Viet Nam 5.8 2005 6.4 (11) 7.8 192 Yemen 2004 Imp 1.9 (115) 1998 1.7 (56) 12.9 193 Zambia 14.8 2000 Imp 2.7 (10) 2006 Imp, AL, PR 11.0 (116) 14.2 194 Zimbabwe 16.9 2003 Imp, AL, PR 18.0 (117) 12.3 (a) WHS results are weighted and age standardized Abbreviations for ICF components: AL=activity limitations; Imp=impairments; PR=participation restrictions. 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Colombo, National Statistics Office, 2001 (http://www.statistics.gov.lk/PopHouSat/PDF/Disability/p11d2%20Disabled%20persons%20by%20Age%20and%20 Sex.pdf, accessed 4 February 2010). 99. Hunte A. Disability studies in Suriname [Datos de discapacidad en el Caribe]. Kingston, Inter-American Development Bank, 2005 (http://tinyurl.com/ylgft9x, accessed 4 February 2010). 100. National Statistics Office of Switzerland [web site]. (http://www.bfs.admin.ch/bfs/portal/fr/index/themen/20/06.html, accessed 4 February 2010). 101. From official statistics provided to the WHO regional office. Note: data refer to working-age population. 102. National Statistics Office of Thailand [web site]. (http://portal.nso.go.th/otherWS-world-context-root/index.jsp, accessed 4 February 2010). 103. National disability identification survey. Nuku’alofa, Tonga Department of Statistics, 2006 (http://www.spc.int/prism/Country/ to/Stats/pdfs/Disability/NDIS06.pdf, accessed 4 February 2010). 104. Schmid K, Vézina S, Ebbeson L. Disability in the Caribbean. A study of four countries: a socio-demographic analysis of the disabled. UNECLAC Statistics and Social Development Unit, 2008 (http://www.eclac.org/publicaciones/xml/2/33522/L.134. pdf, accessed 4 February 2010). 105. Turkey disability survey. Ankara, Turkish Statistical Institute, 2002 (http://www.turkstat.gov.tr/VeriBilgi.do?tb_id=5&ust_id=1, accessed 4 February 2010). 106. Census 2002. Kampala, Uganda Bureau of Statistics (http://www.ubos.org/index.php?st=pagerelations2&id=16&p=rela ted%20pages%202:2002Census%20Results, accessed 10 March 2010). 107. Uganda national household survey 2005–2006: report on the socio-economic module. Kampala, Uganda Bureau of Statistics, 2006 (http://www.ubos.org/onlinefiles/uploads/ubos/pdf%20documents/UNHSReport20052006.pdf, accessed 4 April 2010). 108. United Kingdom National Statistics [web site]. (http://www.statistics.gov.uk, accessed 4 February 2010). 109. Tanzania disability survey 2008. Dar es Salaam, National Bureau of Statistics, 2008. (http://www.nbs.go.tz/index. php?option=com_phocadownload&view=category&id=71:dissability&Itemid=106#, accessed 10 March 2010). 110. Census 2000. Washington, United States Census Bureau (http://www.census.gov/main/www/cen2000.html, accessed 6 March 2010). 111. American community survey 2007. Washington, United States Census Bureau (http://www.census.gov/acs/, accessed 4 February 2010). [Note: Prevalence data are valid for people aged 5 years and older.] 112. Damonte AM. Regional harmonization of the definition of disability [Armonización regional de la definición de discapacidad]. Buenos Aires, Inter-American Development Bank, 2005 (http://tinyurl.com/ylgft9x, accessed 4 February 2010). 113. Vanuatu: disability country profile. Suva, Pacific Islands Forum Secretariat, 2009 (http://www.forumsec.org/pages.cfm/ strategic-partnerships-coordination/disability/, accessed 2 June 2009). 114. León A. Venezuela: characterization of people with disability, Census 2001 [Datos de discapacidad en la región Andina]. Lima, Inter-American Development Bank, 2005 (http://tinyurl.com/ylgft9x, accessed 4 February 2010). 115. Central Statistical Organization [web site]. (http://www.cso-yemen.org/publication/census/second_report_demogra- phy_attached.pdf, accessed 4 February 2010). 116. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia: a national representative study. Oslo, SINTEF, 2006 (http://www.sintef.no/upload/Helse/Levekår%20og%20tjenester/ZambiaLCweb.pdf, accessed 7 December 2009). 117. Eide AH et al. Living conditions among people with activity limitations in Zimbabwe: a representative regional survey. Oslo, SINTEF, 2003 (http://www.safod.org/Images/LCZimbabwe.pdf, accessed 4 February 2010). 280 Technical appendix B Overview of global and regional initiatives on disability statistics There are numerous databases (including web sites) and studies of various international and national organizations that have compiled disability sta- tistics (1–9). To illustrate some of the current initiatives to improve disability statis- tics, the work of five organizations is described here. They are: ■ The United Nations Washington Group on Disability Statistics. ■ The United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP). ■ The WHO Regional Office for the Americas/Pan American Health Organization (PAHO). ■ The European Statistical System (ESS). ■ The United Nations Economic Commission for Europe (UNECE). The United Nations Washington Group on Disability Statistics The Washington Group was set up by the United Nations Statistical Commission in 2001 as an international, consultative group of experts to facilitate the meas- urement of disability and the comparison of data on disability across countries (10). At present, 77 National Statistical Offices are represented in the Washington Group, as well as seven international organizations, six organizations that rep- resents people with disabilities, the United Nations Statistics Division, and three other United Nations-affiliated bodies. As described in Chapter 2, the Washington Group created a short set of six questions for use in censuses and surveys, following the Fundamental Principles of Official Statistics and consistent with the International Classification of Functioning, Disability and Health (ICF) (11). These ques- tions, when used in combination with other census data, assess the degree of participation of people with disabilities in education, employment, and social life – and can be used to inform policy on equalization of opportu- nities. The United Nations Principles and Recommendations for Population and Housing Censuses incorporates the approach taken by the Washington Group (12). 281 World report on disability The recommended Washington Group and Rights-Based Society”. They have imple- short set of questions thus aims to identify the mented a joint ESCAP/WHO disability project majority of the population with difficulties in (2004–06) – based on the ICF – to improve the functioning in six core domains of function- availability, quality, comparability, and policy ing (seeing, hearing, mobility, cognition, self- relevance of disability statistics in the region. care, communication); difficulties that have An ongoing project entitled – Improvement the potential to limit independent living or of Disability Measurement and Statistics in social integration if appropriate accommoda- Support of the Biwako Millennium Framework tion is not made. The Washington Group short and Regional Census Programme – funded set of census questions underwent a series of by the United Nations Development Account cognitive and field tests in 15 countries before builds on the momentum generated by the being finalized (13). earlier project. The project – implemented by A second priority was to recommend the UNESCAP’s Statistics Division in close one or more extended sets of survey items to collaboration with internal and external part- measure the different aspects of disability, or ners including the United Nations Statistics principles for their design, that could be used Division, the Washington Group, World Health as components of population surveys or as sup- Organization (WHO), and selected national plements to special surveys. The extended set statistical offices in the region (18) – is designed of questions has undergone cognitive testing in to be linked to other global initiatives involving 10 countries, with further field-testing taking disability data collection through population place in five countries in Asia and the Pacific – censuses and surveys such as the Washington in collaboration with the UNESCAP Statistical Group. The project combines several compo- Division – and one in Europe. nents including: The Washington Group is also involved ■ country pilot tests of standard question sets; in building capacity in developing countries ■ targeted training of statistical experts and to collect data on disability, for example by health professionals; training government statisticians on disability ■ country advisory services; measurement methodology. In addition, it has ■ development of knowledge management produced a series of papers that: tools and the establishment of a regional ■ describe its work for disabled peoples’ network of national disability statistics organizations (14); experts working within governments, to ■ can assist national statistical offices (15); facilitate cross-country cooperation. ■ show how disability is interpreted using the short set of six questions (16); The Pan American Health Organization ■ give examples of how the short set of ques- In Latin America and the Caribbean, PAHO tions can be used to monitor the United has established a strategic initiative to improve Nations Convention on the Rights of Persons and standardize disability data through the with Disabilities (CRPD) (17). application of the ICF. The initiative takes the form of a network of governmental and non- United Nations Economic and Social governmental organizations involved in the Commission for Asia and the Pacific collection and use of disability data. It serves The UNESCAP has been working to improve two broad purposes. At country level, the focus disability measurement and statistics in line is on building capacity and providing technical with the Biwako “Millennium Framework assistance for disability information systems. for Action towards an Inclusive, Barrier-Free At the regional level, the initiative promotes 282 Technical appendix B the sharing of knowledge and best practice and languages of the European Union, to testing the the development of standard measurement and questions and to using a common implementa- operational guidelines (19). tion schedule and methodology. Results from a special survey, the European Health Interview The European Statistical System Survey, will gradually become available in the Over the past decade, ESS has undertaken coming years. The ESHSI is planned for imple- a project in the European Union to achieve mentation in 2012. comparable statistics on health and disability through surveys (20). As a result, a consist- United Nations Economic Commission ent framework of household and individual for Europe – Budapest Initiative surveys measuring health and disability is on Measuring Health Status now being implemented within the European In 2004, under the aegis of UNECE, a Joint Union. Common questions on disability have Steering Group and Task Force on Measuring been integrated into the various European-wide Health Status was set up with the UNECE, surveys. Several general questions, for instance, the Statistical Office of the European Union have been included on activity restrictions in (EUROSTAT) and WHO. The Task Force has the European Union–Statistics on Income and been known as the Budapest Initiative since its Living Conditions (EU–SILC) surveys which first meeting in Budapest in 2005 (21). replaced the European Community Household The main purpose of the Budapest Initiative Panel. The EU–SILC includes a “disability” was to develop a new common instrument, question on “longstanding limitations in activ- based on the ICF, to measure health state suit- ities due to a health problem” (known as the able for inclusion in interview surveys. The Global Activity Limitation Indicator – GALI – objectives were to obtain basic information question) that is used in the calculation of the on population health which can also be used Healthy Life Years structural indicator. Special to describe trends in health over time within surveys, such as the European Health Interview a country, across subgroups of the population Survey (EHIS), and the European Survey on and across countries within the framework of Health and Social Integration (ESHSI) – have official national statistical systems. Health state also been developed. The EHIS in its first round measures functional ability in terms of capacity (2008–10) included questions on domains of – and not other aspects of health such as deter- functioning including seeing, hearing, walk- minants and risk factors, disease states, use of ing, self-care, and domestic life. The ESHSI health care, and environmental barriers and addresses additional domains of functioning as facilitators (21, 22). This information is useful well as environmental factors including mobil- for both the profiling of health of different pop- ity, transport, accessibility to buildings, educa- ulations, and also for subsequent development tion and training, employment, internet use, of summary indices of population health such social contact and support, leisure pursuits, as those used by the Global Burden of Disease. economic life, attitudes, and behaviour. The Budapest Initiative questions cover vision, Variables and questions for these different hearing, walking and mobility, cognition, surveys all are linked to the ICF structure. affect (anxiety and depression), and pain – and Each of these surveys also contains the use different response categories relevant to the European Union’s core set of social variables, particular domain (23). which allows for a breakdown by socioeconomic The Budapest initiative also works to coor- factors. Importance has been attached to trans- dinate with existing groups and build on exist- lating the common questions into the various ing work carried out by the ESS, the World 283 World report on disability Health Survey, the joint United States of America from UNESCAP – are carrying out cognitive and Canada survey and the Washington and field testing of an extended question set Group. For example, the Washington Group developed by the Washington Group/Budapest and the Budapest Initiative – with support Initiative collaboration. References 1. United Nations disability statistics database (DISTAT). New York, United Nations, 2006 (http://unstats.un.org/unsd/demo- graphic/sconcerns/disability/disab2.asp, accessed 9 December 2009). 2. United Nations demographic yearbook, special issue: population ageing and the situation of elderly persons. New York, United Nations, 1993. 3. Human development report 1997. New York, United Nations Development Programme and Oxford University Press, 1997. 4. Filmer D. Disability, poverty and schooling in developing countries: results from 11 household surveys. Washington, World Bank, 2005, (http://siteresources.worldbank.org/SOCIALPROTECTION/Resources/SP-Discussion-papers/Disability-DP/0539. pdf, accessed 9 December 2009). 5. Statistics on the employment situation of people with disabilities: a compendium of national methodologies. Geneva, International Labour Organization, 2003. 6. Disability at a glance: a profile of 28 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2004. 7. Data on disability. Washington, Inter-American Development Bank, 2005 (http://www.iadb.org/sds/soc/site_6215_e. htm#Prevalence, accessed 9 December 2009). 8. Disability and social participation in Europe. Brussels, EUROSTAT, 2001. 9. Lafortune G, Balestat G. Trends in severe disability among the elderly people: assessing the evidence in 12 OECD countries and the future implications. Paris, Organisation for Economic Co-operation and Development, 2007 (OECD Health Working Papers No. 26) (http://www.oecd.org/dataoecd/13/8/38343783.pdf, accessed 9 December 2009). 10. Washington Group on Disability Statistics. Atlanta, Centers for Disease Control and Prevention, 2009 (http://www.cdc.gov/ nchs/washington_group.htm, accessed 9 December 2009). 11. Statistical Commission Report on the Special Session, New York, 11–15 April 1994. New York, United Nations Economic and Social Council, 1994 (Supplement No. 9, Series No. E/CN.3/1994/18). 12. Principles and recommendations for population and housing censuses: revision 2. New York, United Nations, 2008 (Statistical Papers Series M, No. 67/Rev.2) (http://unstats.un.org/unsd/demographic/sources/census/docs/P&R_Rev2.pdf). 13. Washington Group on Disability Statistics. In: Statistical Commission forty-first session, 23–26 February 2010. New York, United Nations Economic and Social Council, 2010 (E/CN.3/2010/20) (http://unstats.un.org/unsd/statcom/doc10/2010- 20-WashingtonGroup-E.pdf, accessed 29 December 2010). 14. Disability information from censuses. Hyattsville, Washington Group on Disability Statistics, 2008 (http://www.cdc.gov/ nchs/data/washington_group/meeting8/DPO_report.pdf, accessed 9 December 2009). 15. Development of an internationally comparable disability measure for censuses. Hyattsville, Washington Group on Disability Statistics, 2008 (http://www.cdc.gov/nchs/data/washington_group/meeting8/NSO_report.pdf, accessed 9 December 2009). 16. Understanding and interpreting disability as measured using the WG short set of questions. Hyattsville, Washington Group on Disability Statistics, 2009 (http://www.cdc.gov/nchs/data/washington_group/meeting8/interpreting_disability.pdf, accessed 9 December 2009). 17. Monitoring the United Nations (UN) Convention on the Rights of Persons with Disabilities. Hyattsville, Washington Group on Disability Statistics, 2008 (http://www.cdc.gov/nchs/data/washington_group/meeting8/UN_convention.htm, accessed 9 December 2009). 18. Improvement of disability measurement and statistics in support of Biwako Millennium Framework and Regional Census Programme. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2010 (http://www.unes- cap.org/stat/disability/index.asp#recent_activities, accessed 29 December 2010). 19. Vásquez A, Zepeda M. An overview on the state of art of prevalence studies on disability in the Americas using the International Classification of Functioning, Disability and Health (ICF): conceptual orientations and operational guidelines with regard to the application of the ICF in population studies and projects of intervention. Santiago, Programa Regional de Rehabilitación, Pan American Health Organization, 2008. 284 Technical appendix B 20. EUROSTAT. Your key to European statistics. Luxembourg, European Commission, n.d. (http://epp.eurostat.ec.europa.eu, accessed 9 December 2009). 21. Health state survey module: Budapest Initiative: mark 1. In: Fifty-fifth plenary session, Conference of European Statisticians, Geneva, 11–13 June 2007. Geneva, United Nations Economic Commission for Europe, 2007 (ECE/CES/2007/6) (http://www. unece.org/stats/documents/ece/ces/2007/6.e.pdf, accessed 29 December 2010). 22. Health as a multi-dimensional construct and cross-population comparability. In: Conference of European Statisticians, Joint UNCE/WHO/Eurostat meeting on the measurement of health status, Budapest, Hungary, 14–16 November 2005. United Nations Economic Commission for Europe, 2005 (Working Paper No. 1) (http://www.unece.org/stats/documents/ece/ces/ ge.13/2005/wp.1.e.pdf, accessed 29 December 2010). 23. Revised terms of reference of UNECE/WHO/EUROSTAT steering group and task force on measuring health status. In: Conference of European Statisticians, First Meeting of the 2009/2010 Bureau, Washington, D.C., 15–16 October 2009. Geneva, United Nations Economic Commission for Europe, 2009 (ECE/CES/BUR/2009/Oct/11) (http://www.unece.org/stats/docu- ments/ece/ces/bur/2009/mtg1/11.e.pdf, accessed 29 December 2010). 285 Technical appendix C Design and implementation of the World Health Survey The World Health Survey was implemented in 70 countries. The sample sizes ranged from 700 in Luxembourg to 38 746 in Mexico. The respond- ents were men and women older than 18 years living in private households. All samples were drawn from a current national frame using a multistage cluster design so as to allow each household and individual respondent to be assigned a known nonzero probability of selection, with the following exceptions: in China and India, the surveys were carried out in selected provinces and states; in the Comoros, the Republic of the Congo, and Côte d’Ivoire, the surveys were restricted to regions where over 80% of the popu- lation resided; in Mexico, the sample was intended to provide subnational estimates at the state level. The face-to-face interviews were carried out by trained interviewers. The individual response rates (calculated as the ratio of completed interviews among selected respondents in the sample, and excluding ineligible respondents from the denominator) ranged from 63% in Israel to 99% in the Philippines. The health module in the World Health Survey was closely synchronized with the revision of the International Classification of Functioning, Disability and Health (ICF). The aim was not to capture individual impairments, but to provide a cross-sectional snapshot of functioning among the respondents in the different country surveys that could be aggregated to the population level. Respondents were not asked about health conditions or about the duration of their limitation in functioning. To develop a World Health Survey module for health state description, an item pool was constructed and the psychometric properties of each ques- tion documented (1). Qualitative research identified the core constructs in different countries. The questionnaire was tested extensively before the start of the main study. The pilot testing was carried out initially in three coun- tries in United Republic of Tanzania, the Philippines and Colombia and subsequently used in World Health Organization’s (WHO) MultiCountry Survey Study in 71 surveys in 61 countries. Of these surveys, 14 were car- ried out using an extensive face-to-face interview of respondents covering 287 World report on disability 21 domains of health with sample size of more Analysis of the World Health than 88 000 respondents (1). The World Health Survey, including derivation Survey survey instrument was then developed in several languages and further refined using of threshold for disability cognitive interviews and cultural applicability tests. Rigorous translation protocols devised Data from 69 countries were used in the analy- by panels of bilingual experts, focused back- ses for this Report. Data from Australia were translations, and in-depth linguistic analy- excluded as the survey was carried out partly as ses were used to ensure culturally relevant a drop-and-collect survey and partly as a tele- questions. Between February and April 2002, phone interview and it was not possible to com- revised modules for health state descrip- bine these estimates due to unknown biases. tion were further tested in China, Myanmar, Data were weighted for 59 of the 69 surveys based Pakistan, Sri Lanka, Turkey, and the United on complete sampling information. Individual Arab Emirates. country estimates are presented in Appendix A Short and long versions of the survey excluding those countries that were unweighted: instrument were then developed. The survey Austria, Belgium, Denmark, Germany, Greece, instrument asked about difficulties over Italy, Netherlands, and the United Kingdom of the last 30 days in functioning in eight life Great Britain and Northern Ireland (all short domains: mobility, self care, pain and dis- version surveys) and Guatemala and Slovenia comfort, cognition, interpersonal activities, (both long version surveys) or where the sur- vision, sleep and energy, and affect. For each veys were not nationally representative: China, domain, two questions of varying difficulty the Comoros, the Republic of the Congo, and were asked in the long version of the surveys, Côte d’Ivoire. The survey in India was carried while a single question was asked in the short out in six states, these estimates were weighted version. The questions in the World Health to provide national estimates and the results Survey in the different domains were very have been included in Appendix A. Pooled similar or identical to questions that had been prevalence estimates were calculated from asked in national and international surveys weighted and age-standardized data from 59 of on health and disability. They spanned the the 69 countries levels of functioning within a given domain While the sample sizes in each country and focused as far as possible on the intrinsic in the survey vary, for the purposes of the capacities of individuals in that domain. In pooled estimates the post-stratified weights the case of mobility, for example, respondents were used with no specific adjustment to the were asked about difficulties with moving individual survey sample size. The United around and difficulties with vigorous activi- Nations population database was used for ties. In the case of vision, they were asked post-stratification correction of the sample about difficulties with near and distant vision. weights and for the sex standardization. For The response scale for each item was identical age standardization, the WHO world stand- on a 5 point scale ranging from no difficulty ard population was used (2). (a score of 1) to extreme difficulty or cannot Detailed information on the quality metrics do (a score of 5). The prevalence of difficulties of each survey in terms of representativeness, in functioning was estimated across sex, age, response rates, item non-response and person place of residence and wealth quintiles. non-response are available from the World 288 Technical appendix C Table C.1. Proportion of respondents reporting different levels of difficulty on 16 World Health Survey domains of functioning None Mild Moderate Severe Extreme Mobility Moving around 64.8 16.5 11.4 5.9 1.3 Vigorous activity 50.7 16.0 13.3 10.3 9.7 Self-care Self-care 79.8 10.7 5.9 2.6 1.0 Appearance, grooming 80.4 10.7 6.0 2.2 0.9 Pain Bodily aches and pains 45.2 26.3 16.8 9.5 2.2 Bodily discomfort 49.2 24.9 16.1 8.0 1.8 Cognition Concentrating, remembering 61.5 20.0 11.8 5.5 1.3 Learning 65.6 17.3 9.8 4.7 2.5 Interpersonal relationships Participation in community 76.8 13.1 6.6 2.4 1.2 Dealing with conflicts 74.4 14.4 6.7 3.0 1.5 Vision Distance vision 75.4 11.6 7.1 4.3 1.6 Near vision 76.3 11.9 7.0 3.8 1.0 Sleep and energy Falling asleep 60.9 18.9 10.0 6.6 1.6 Feeling rested 57.2 22.1 13.1 6.2 1.4 Affect Feeling depressed 56.1 22.5 12.9 6.6 2.0   Worry, anxiety 51.2 22.9 14.0 8.3 3.6 Health Survey web site: http://www.who.int/ 8.4% of respondents reported having extreme healthinfo/survey/whsresults/en/index.html difficulties or being unable to function in at least one area of functioning. Furthermore, Respondents reporting 3.3% of respondents reported extreme dif- different levels of difficulty ficulties in functioning in two or more areas Data on 16 items are available from 53 and 1.7% reported extreme difficulties in countries, with the remaining 16 countries functioning in three or more areas. Difficulties providing data on eight items. Table C.1 shows with self-care and interpersonal relation- the proportion of respondents who responded ships, which includes participation in com- in each category. munity and dealing with conflicts, were the A much larger proportion of respondents least common, while difficulties with mobil- reported severe (10.3%) or extreme (9.7%) dif- ity and pain were among the most commonly ficulties with vigorous activities than in the reported. Across all domains, difficulties in areas of self-care and interpersonal relation- functioning were more common in older age ships. Once vigorous activities are excluded, groups and among women. 289 World report on disability The original 16-item health module was Fig. C.1. Cumulative Distribution of IRT analysed with the Rasch Rating Scale model disability scores using the WINSTEPS computer program. 100 Surveys that used only 8 items and those that used the full 16 items were analysed together General population percentile 80 in this model to yield a common scale across 60 all surveys. A calibration was obtained for each item. To determine how well each item 40 contributed to the common global function- ing measurement, chi squared (χ2) goodness- 20 of-fit statistics, known as Infit Mean Squares 0 (MNSQ), were also calculated. The Infit 0 10 20 30 40 50 60 70 80 90 100 MNSQ ranged from 0.77 to 1.38 (SD = 0.27). IRT disability score Only the domain of vision slightly exceeded the recommended item misfit threshold of These proportions are not to be construed 1.3, but this domain was retained in the as the prevalence of disability in the population. analysis. The Dimensionality Map – a prin- Difficulties in functioning are not equivalent to cipal components factor plot on the residuals specific impairments. A person with a particu- – showed no existence of a secondary factor. lar health condition would be likely to expe- To test Differential Item Functioning (DIF) rience a constellation of limitations. For the by country, the logistic-regression approach purpose of this Report and in keeping with the described by Zumbo was used (3). The ICF, disability is conceptualised as a decrement pseudo-R2 change of 0.02 showed a tolerable in functioning above a chosen threshold. It is DIF effect. Finally, to take into account each measured by a vector of a constellation of items particular item calibration for the 16 health that span a set of domains that measure this items, raw scores were transformed through construct in the most parsimonious manner. Rasch modelling into a new scale of scores, with 0  =  no difficulty and 100  =  complete Calculating the composite score difficulty. A composite score for each individual was calculated across all the 16 items to estimate Determining the threshold for where each individual in the survey would be the prevalence of disability placed on a latent dimension of functioning. An Since the score range derived from the IRT Item Response Theory (IRT) approach using a model was continuous, to divide the popula- Rasch model was used to construct this score tion into “disabled” and “not disabled” groups (see Fig. C.1 for the cumulative distribution of it was necessary to decide on a threshold value. the IRT scores). Rasch models help to transform The average of scores from respondents raw data from the categorical ordered self-report who reported extreme difficulties or total scale of difficulty to an equal-interval scale. inability in any of the eight domains of func- Equality of intervals is achieved through log tioning was calculated for all countries. People transformations of raw data odds, and abstrac- reporting extreme difficulties in functioning in tion is accomplished through probabilistic equa- these domains are considered disabled in most tions. This transformation for the partial credit data collection strategies for estimating disabil- model allows not only for a hierarchical order of ity prevalence. The average scores of respond- difficulty of the items but for different thresholds ents who reported having been diagnosed with of item categories as well. a chronic disease – such as arthritis, angina, 290 Technical appendix C Table C.2. Showing different thresholds (40 and 50) and related disability prevalence rates from multidomain functioning levels in 59 countries by country level, sex, age, place of residence and wealth Population Threshold of 40 Threshold of 50 subgroup Higher Lower All countries Higher income Lower income All countries income income (standard countries countries (standard countries countries error) (standard (standard error) (standard (standard error) error) error) error) Sex Male 9.1 (0.32) 13.8 (0.22) 12.0 (0.18) 1.0 (0.09) 1.7 (0.07) 1.4 (0.06) Female 14.4 (0.32) 22.1 (0.24) 19.2 (0.19) 1.8 (0.10) 3.3 (0.10) 2.7 (0.07) Age group 18–49 6.4 (0.27) 10.4 (0.20) 8.9 (0.16) 0.5 (0.06) 0.8 (0.04) 0.7 (0.03) 50–59 15.9 (0.63) 23.4 (0.48) 20.6 (0.38) 1.7 (0.23) 2.7 (0.19) 2.4 (0.14) 60 and over 29.5 (0.66) 43.4 (0.47) 38.1 (0.38) 4.4 (0.25) 9.1 (0.27) 7.4 (0.19) Place of residence Urban 11.3 (0.29) 16.5 (0.25) 14.6 (0.19) 1.2 (0.08) 2.2 (0.09) 2.0 (0.07) Rural 12.3 (0.34) 18.6 (0.24) 16.4 (0.19) 1.7 (0.13) 2.6 (0.08) 2.3 (0.07) Wealth quintile Q1(poorest) 17.6 (0.58) 22.4 (0.36) 20.7 (0.31) 2.4 (0.22) 3.6 (0.13) 3.2 (0.11) Q2 13.2 (0.46) 19.7 (0.31) 17.4 (0.25) 1.8 (0.19) 2.5 (0.11) 2.3 (0.10) Q3 11.6 (0.44) 18.3 (0.30) 15.9 (0.25) 1.1 (0.14) 2.1 (0.11) 1.8 (0.09) Q4 8.8 (0.36) 16.2 (0.27) 13.6 (0.22) 0.8 (0.08) 2.3 (0.11) 1.7 (0.08) Q5(richest) 6.5 (0.35) 13.3 (0.25) 11.0 (0.20) 0.5 (0.07) 1.6 (0.09) 1.2 (0.07)   Total 11.8 (0.24) 18.0 (0.19) 15.6 (0.15) 2.0 (0.13) 2.3 (0.09) 2.2 (0.07) Source (4). asthma, diabetes, and depression – were also Therefore 40 was chosen as the threshold point computed. The respondents diagnosed with between “disabled” and “not disabled” for all these conditions included those with and survey respondents. It should be noted that the without current treatment. Respondents in Global Burden of Disease class of moderate dis- the World Health Survey who reported being ability, used to generate the estimates of dis- on current treatment had a higher score than ability from the Global Burden of Disease data those not on current treatment. Given that as reported in Chapter  2, includes conditions these chronic diseases are associated with dis- such as arthritis and angina that were also used ability, it is justifiable to use them as indicator in the analysis of the World Health Survey data conditions to set a meaningful threshold for to set this threshold. significant disability. The average score for all To assess the sensitivity of these results, these groups – those reporting extreme dif- the item on vigorous activities was dropped ficulties and those reporting chronic diseases from the estimation of the score and the same – was around 40, with a range from 0 (no func- steps followed for setting a threshold and deriv- tioning difficulty) to 100 (complete difficulty). ing the proportion of those “disabled”. These 291 World report on disability Table C.3. IRT score based on different thresholds of item categories N % mean IRT SE None 46 069 18.59 2.49 0.03 Severe 48 678 19.53 37.45 0.04 Extreme1+ 25 344 8.98 40.75 0.07 Extreme2+ 11 970 3.6 45.53 0.08   Extreme3+ 6 361 1.88 49.54 0.08 a. Severe difficulty in at least one item. b. Extreme difficulty in at least one item. c. Extreme difficulty in at least two items. d. Extreme difficulty in three or more items. analyses show that the disability prevalence The effects of asset ownership and household rates dropped from 17.5% to 15.6%. Therefore, characteristics on household wealth were simul- based on this sensitivity test, it was decided to taneously estimated using a random-effects drop the item for vigorous activities from the probit model (DIHOPIT), with the hierarchical estimates. error term at the household level. The output of The estimates of disability prevalence using the model is a set of covariate coefficients and the difficulties in functioning framework and asset cut points. The covariate coefficients rep- the method described above are presented in resent the underlying relationship between each Table C.2. The threshold of 40 produces an esti- sociodemographic predictor and the “latent mate of 15.6% of the population experiencing wealth variable”. The asset cut points represent disability. Raising this threshold to a score of 50 the threshold on the wealth scale above which (the mean score for those who report extreme a household is more likely to own a particu- difficulties in three or more items of function- lar asset. This “asset ladder” was then applied ing, see Table C.3) produces an estimate of 2.2% to every household in each survey to produce of people with very significant disability (see adjusted estimates of household wealth. Table C.2). Comparison with the Global Measuring wealth in the Burden of Disease World Health Survey To compare the disability prevalence rates obtained from the World Health Survey with Wealth – an indicator of the long-running eco- the estimates of “years lived with disability” nomic status of households – was derived using (YLD) from the Global Burden of Disease study, a dichotomous hierarchical ordered probit a correlation coefficient was calculated. This (DIHOPIT) model. produced a Spearman rank order correlation The premise is that wealthier house- of 0.46 and a Pearson product moment correla- holds are more likely to own a given set of tion of 0.35, indicating a moderate correlation assets, thus providing an indicator of eco- between the two approaches. While the two nomic status. Asset-based approaches avoid approaches estimate disability with different some of the reporting biases that arise from methods, the moderate degree of correlation self-reported income. The method has been between them suggests that these approaches, used in previous cross-national studies of at triangulation with better primary data, economic status and health in developing could provide fairly reliable estimates of dis- countries (5, 6). ability prevalence. It should also be noted that 292 Technical appendix C alternative approaches to defining and quanti- functioning in multiple domains to validate the fying disability would produce different esti- self-reports and correct for reporting biases. mates of prevalence. A decision has been made in this analysis to set a threshold for disability on a continuous Limitations of the World Health Survey functioning status score that is contestable. The Like all approaches to prevalence estimation, scores could have been affected by reporting the World Health Survey methodology has biases; the choice of threshold; and diagnosis its limitations and uncertainties. For exam- of chronic diseases that were based on algo- ple, there remain substantially greater varia- rithms using questions based on symptoms tions across countries in reported disability and were not corroborated with other tests for than may be plausible. There could have been these chronic diseases. It is possible that both systematic reporting biases in levels of func- false-positives and false-negatives are included tioning and in other aspects of self-reported in this sample. health. Like other household interview sur- There are several other limitations of the veys and censuses, the World Health Survey is World Health Survey data including: not all based entirely on self-report. It is quite likely surveys were nationally representative; not all that this leads to variations, because people survey data were weighted; the inclusion of only understand questions differently and pick two high-income countries using the long ver- categories on the scale based on their expe- sion of the survey; the choice of parsimonious riences, expectations and culture. Despite domains of health could have possibly excluded attempts to ensure adequate conceptual trans- respondents with functioning problems in lations and uniform understanding of ques- other areas such as hearing, breathing, and tions and responses, these problems may not so on; there were no independent validations have been entirely eliminated. While IRT is of self-reported data through examinations supposedly population-invariant, it may not or health records; and both institutionalised be able to adjust for these systematic report- populations and children were excluded from ing variations. This produces some problems the survey. Future data collection efforts on in comparing results across populations. To disability prevalence and determinants should address this issue of comparability – how dif- attempt to address these shortcomings. ferent respondents used response categories – the surveys included anchoring vignettes Discussion of approach that were intended to calibrate the respond- Several conceptual points will remain contro- ents’ description of their own functioning. versial in this approach. First, the decision on Statistical methods have been developed where to place the threshold is made during for correcting biases (or variations) in self- the analysis of the data rather than being set a reported functioning using such calibration priori – before or during the data collection – as data (7). However, while these methods have would be the case, for example, if one were to use demonstrated the existence of “biases” in self- a set of impairment categories where only those reported functioning, they have so far not been individuals above a certain level of impairment found to adequately correct for these biases. were captured during data collection. Ideally, self-reported disability data from It is always necessary to set a threshold and surveys (where responses may often reflect a there is no “gold standard” for where this line concern with activity limitations or partici- should be drawn. What is important is not so pation restrictions) should be compared and much where the line is drawn, as the reasons combined with independent expert assessment justifying that decision. This is because deci- of functioning that measure decrements in sions about thresholds should be based on a 293 World report on disability range of considerations. A policy-maker, for had an overall score below the 40% threshold are example, needs to know the implications of excluded. For example, of the 1.4% of respond- each level of severity that could be chosen as ents who reported severe or extreme difficul- a threshold in terms of pensions, health insur- ties with moving around, 18% were below the ance and other disability-related programmes. threshold. A detailed analysis of these reporting Decisions about resource allocation cannot be patterns suggests that these errors of exclusion avoided. The benefit of a transparent process of do not have a significant impact on the pooled setting thresholds is that these decisions can be estimates presented in the Report. publicly debated, rather than hidden in some Third, the World Health Survey asked about categorical listing of “severe disabilities”. decrements in functioning in the past month, Second, these World Health Survey preva- thereby including those with relatively acute lence estimates are based on averaging, and will problems, which may be short-lived. Other result in a distribution around the threshold. approaches to disability measurement only While individuals included in this estimate of consider chronic problems that have lasted six “disability” from the World Health Survey include months or longer. individuals with severe and/or extreme difficul- Finally, it would be desirable to incorporate ties in functioning in any one given domain (e.g. measures of the attitudinal and built environ- those likely to be captured in surveys of disability ment within such surveys, so as to explore the that focus predominantly on impairments), the interaction between the features of the indi- estimate also includes some people who may vidual and the features of the environment have mild levels of difficulty in functioning in which contribute to producing disability, and multiple domains who may not be considered to disentangle the complexity of the experi- disabled by traditional definitions. Equally, some ence of disability. The feasibility of such even respondents who reported severe or extreme dif- more complex exercises need to be examined ficulties in functioning in one domain, but who in resource constrained contexts. References 1. Üstün TB et al. The World Health Survey. In: Murray CJL, Evans DB, eds. Health systems performance assessment: debates, methods and empiricism. Geneva, World Health Organization, 2003:797–808. 2. Ahmad OB et al. Age Standardization of Rates: a new WHO standard. Geneva, World Health Organization, 2001. 3. Zumbo BD. A handbook on the theory and methods of Differential Item Functioning (DIF): logistic regression modeling as a unitary framework for binary and Likert-type (ordinal) item scores. Ottawa, Directorate of Human Resources Research and Evaluation, Department of National Defence, 1999. 4. World Health Survey. Geneva, World Health Organization, 2002–2004. 5. Ferguson B et al. Estimating permanent income using asset and indicator variables. In: Murray CJL, Evans DB, eds. Health systems performance assessment: debate, new methods, and new empiricism. Geneva, World Health Organization, 2003. 6. Gakidou E et al. Improving child survival through environmental and nutritional interventions: the importance of target- ing interventions toward the poor. JAMA: Journal of the American Medical Association, 2007,298:1876-1887. doi:10.1001/ jama.298.16.1876 PMID:17954539 7. Tandon A et al. Statistical models for enhancing cross-population comparability. In: Murray CJL, Evans DB, eds. Health systems performance assessment: debates, methods and empiricism. Geneva, World Health Organization, 2003:727–746. 294 Technical appendix D Global Burden of Disease methodology The Global Burden of Disease study introduced a new metric – the “disability adjusted life year” (DALY) – to simultaneously quantify the burden of disease from premature mortality and from disability (1). The DALY is a metric for lost years of healthy life from mortality and disability. For a particular disease or injury, DALYs are calculated as the sum of the years of life lost due to premature mortality (YLL) in a population, and the years of full health lost due to disability (YLD) from incident cases of the disease or injury. The years lived in states of less than full health are converted to the equivalent number of lost years of full health using health- state valuations, or “disability weights”. The disability weights provide a single average numerical score between 0 (for full health) and 1 (for health states equivalent to death). YLD have been calculated for disabling sequelae of a comprehensive set of diseases and injuries. The country-level rates of YLD given in Appendix A are estimated by imputation from regional-level estimates, making use of available country-specific estimates for around 20 causes and country-spe- cific analyses of cause-specific mortality. They are computed by summing YLD across all diseases and injuries, for all ages and both sexes, without further adjustments for co-morbidity, and dividing the result by the total population. The original Global Burden of Disease study established disability severity weights for 22 sample “indicator conditions”, using an explicit “trade-off ” protocol in a formal exercise involving health workers from all regions of the world. Subsequent valuation exercises carried out in various settings have closely matched the results of the original Global Burden of Disease exercise (2). The weights obtained were then grouped into seven classes, with Class I having a weight between 0.00 and 0.02 and Class VII a weight between 0.7 and 1.0 (1). To generate disability weights for the remainder of the approximately 500 disabling sequelae in the study, participants in the study were asked to estimate distributions across the seven classes for each sequela. 295 World report on disability The Global Burden of Disease 2004 update information on the incidence, prevalence and estimated age and sex-specific prevalence for health states associated with major health con- 632 disease and injury sequelae pairings for 17 ditions remains a major priority for national and subregions of the world in 2004 (3). These were international health and statistical agencies. used, together with the estimated distributions Analyses of the Global Burden of Disease of cases across the seven disability classes, to 2004 data found that of the nearly 6.5 billion estimate the prevalence of disability by severity of the world’s population in 2004, an estimated class. Results are presented here for the preva- 2.9% had severe disability and 15.3% had mod- lence of “severe” disability, defined as severity erate or severe disability. This was generally the Classes VI and VII – the equivalent of having case around the world, though moderate levels blindness, Down syndrome, quadriplegia, of disability were more common in low-income severe depression, or active psychosis. They are and middle-income countries, especially in also presented for “moderate and severe” disa- those aged 60 years and over. Thus, although bility, defined as severity Classes III and higher the proportion of older people was greater in – the equivalent of having angina, arthritis, low high-income countries, older people in these vision, or alcohol dependence. countries were relatively less disabled than their The Global Burden of Disease prevalence counterparts in low-income and middle-income estimates cannot simply be added, because countries. Disability was also more common they were calculated without regard for mul- among children in low-income and middle- tiple pathologies or co-morbidities. In other income countries (see Chapter 2, Table 2.2). words, it is possible for a given individual to When the major causes, globally, of dis- fall within more than one disability level if they ability are considered, adult onset hearing loss have more than one health condition. In adding and refractive errors are the most common. the prevalence of disabilities across sequelae, Mental disorders such as depression, alcohol an adjustment for co-morbidity has been made use disorders and psychoses such as bipolar that takes into account the increased probabil- disorder and schizophrenia also appear in the ity of having certain pairs of conditions (4). top 20 causes (see Table D.1). The pattern dif- Estimates of disability from the Global Burden fers between the high-income countries, on of Disease study were limited to conditions that the one hand, and middle-income and low- last six months or more. The estimates there- income countries, on the other, in that many fore excluded conditions such as fractures from more people in the latter group of countries which most people tend to recover without experience disability associated with prevent- residual problems in functioning. able causes, such as unintentional injuries and The Global Burden of Disease prevalence infertility arising from unsafe abortion and estimates are based on systematic assessments maternal sepsis. The data also highlight the of the available data on incidence, prevalence, lack of interventions in developing countries duration, and severity of a wide range of condi- for easily treated conditions such as hearing tions, often relying on inconsistent, fragmented loss, refractive errors and cataracts. Disability or partial data available from different studies. associated with unintentional injuries among As a result, there are still substantial data gaps younger people is far more common in low- and uncertainties. Improving population-level income countries. 296 Technical appendix D Table D.1. Prevalence of moderate and severe disability (in millions), by leading health condition associated with disability, and by age and income status of countries Health condition (b, c) High-income countries (a) Low-income and World (with a total population middle-income (population of 977 million) countries (with a total 6 437 million) population of 5 460 million) 0–59 years 60 years 0–59 years 60 years All ages and over and over 1 Hearing loss (d) 7.4 18.5 54.3 43.9 124.2 2 Refractive errors (e) 7.7 6.4 68.1 39.8 121.9 3 Depression 15.8 0.5 77.6 4.8 98.7 4 Cataracts 0.5 1.1 20.8 31.4 53.8 5 Unintentional injuries 2.8 1.1 35.4 5.7 45.0 6 Osteoarthritis 1.9 8.1 14.1 19.4 43.4 7 Alcohol dependence and problem 7.3 0.4 31.0 1.8 40.5 use 8 Infertility due to unsafe abortion 0.8 0.0 32.5 0.0 33.4 and maternal sepsis 9 Macular degeneration (f) 1.8 6.0 9.0 15.1 31.9 10 Chronic obstructive pulmonary 3.2 4.5 10.9 8.0 26.6 disease 11 Ischaemic heart disease 1.0 2.2 8.1 11.9 23.2 12 Bipolar disorder 3.3 0.4 17.6 0.8 22.2 13 Asthma 2.9 0.5 15.1 0.9 19.4 14 Schizophrenia 2.2 0.4 13.1 1.0 16.7 15 Glaucoma 0.4 1.5 5.7 7.9 15.5 16 Alzheimer and other dementias 0.4 6.2 1.3 7.0 14.9 17 Panic disorder 1.9 0.1 11.4 0.3 13.8 18 Cerebrovascular disease 1.4 2.2 4.0 4.9 12.6 19 Rheumatoid arthritis 1.3 1.7 5.9 3.0 11.9   20 Drug dependence and problem use 3.7 0.1 8.0 0.1 11.8 Notes: a. High-income countries are those with 2004 Gross National Income per capita of US$ 10 066 or more in 2004, as estimated by the World Bank (5). b. GBD disability classes III and above. c. Disease and injury associated with disability. Conditions are listed in descending order by global all-age prevalence. d. Includes adult onset hearing loss, excluding that due to infectious causes; adjusted for availability of hearing aids. e. Includes presenting refractive errors; adjusted for availability of glasses and other devices for correction. f. Includes other age-related causes of vision loss apart from glaucoma, cataracts and refractive errors. Source (3). 297 World report on disability References 1. Murray CJL, Lopez AD, eds. The Global Burden of Disease: a comprehensive assessment of mortality and disability from dis- eases, injuries and risk factors in 1990 and projected to 2020, 1st ed. Cambridge, Harvard University Press, 1996. 2. Salomon JA, Murray CJL. Estimating health state valuations using a multiple-method protocol. In: Murray CJL et al., eds. Summary measures of population health: concepts, ethics, measurement and applications. Geneva, World Health Organization, 2002. 3. The Global Burden of Disease, 2004 update. Geneva, World Health Organization, 2008. 4. Mathers CD, Iburg KM, Begg S. Adjusting for dependent comorbidity in the calculation of healthy life expectancy. Population Health Metrics, 2006,4:4- doi:10.1186/1478-7954-4-4 PMID:16620383 5. Data and statistics: country groups. Washington, World Bank, 2004 (http://go.worldbank.org/D7SN0B8YU0, accessed 4 January 2010). 298 Technical appendix E World Health Survey analysis for Chapter 3 – Health A total of 51 countries were included in the analysis. ■ High-income and high-middle-income countries (20): Bosnia and Herzegovina, Brazil, Croatia, Czech Republic, Dominican Republic, Estonia, Hungary, Kazakhstan, Latvia, Malaysia, Mauritius, Mexico, Namibia, the Russian Federation, Slovakia, Spain, South Africa, Turkey, United Arab Emirates, Uruguay. ■ Low-income and low-middle-income countries (31): Bangladesh, Burkina Faso, Chad, China, Comoros, Congo, Côte d’Ivoire, Ecuador, Ethiopia, Georgia, Ghana, India, Kenya, Lao People’s Democratic Republic, Malawi, Mali, Mauritania, Morocco, Myanmar, Nepal, Pakistan, Philippines, Paraguay, Senegal, Sri Lanka, Swaziland, Tunisia, Ukraine, Viet Nam, Zambia, Zimbabwe. Countries were selected as follows. Starting with an initial 70 coun- tries, 11 were excluded because of the absence of Pweight or Psweight: Australia, Austria, Belgium, Denmark, Germany, Greece, Guatemala, Italy, the Netherlands, Slovenia, and the United Kingdom of Great Britain and Northern Ireland. Eight countries were excluded for using short-form ques- tionnaire: Finland, France, Ireland, Israel, Luxembourg, Norway, Portugal, and Sweden. Estimates are weighted using World Health Survey post-stratified weights, when available (probability weights otherwise) and age-standardized. T-Tests are performed on results across disability status. Significant differences found between “disabled” and “not-disabled” are reported at 5%. 299 Glossary Accessibility Appropriate technology Accessibility describes the degree to which Assistive technology that meets people’s an environment, service, or product allows needs, uses local skills, tools, and materi- access by as many people as possible, in als, and is simple, effective, affordable, and particular people with disabilities. acceptable to its users. Accessibility standards Assessment A standard is a level of quality accepted as A process that includes the examination, the norm. The principle of accessibility may interaction with, and observation of indi- be mandated in law or treaty, and then spec- viduals or groups with actual or potential ified in detail according to international or health conditions, impairments, activity national regulations, standards, or codes, limitations, or participation restrictions. which may be compulsory or voluntary. Assessment may be required for rehabili- tation interventions, or to gauge eligibility Activity for educational support, social protection, or other services. In the ICF, the execution of a task or action by an individual. It represents the individ- Augmentative and alternative ual perspective of functioning. communication Activity limitations Methods of communicating that supple- ment or replace speech and handwriting In the ICF, difficulties an individual may – for example, facial expressions, symbols, have in executing activities. An activ- pictures, gestures, and signing. ity limitation may range from a slight to a severe deviation in terms of quality Assistive devices; also or quantity in executing the activity in a assistive technology manner or to the extent that is expected of people without the health condition. Any device designed, made or adapted to help a person perform a particular task. Affirmative action Products may be specially produced or gen- erally available for people with a disability. The proactive recruitment of people with disabilities. 301 World report on disability Barriers CBR (community-based rehabilitation) Factors in a person’s environment that, through their absence or presence, limit A strategy within general community devel- functioning and create disability – for exam- opment for rehabilitation, equalization of ple, inaccessible physical environments, a opportunities, poverty reduction, and social lack of appropriate assistive technology, and inclusion of people with disabilities. CBR is negative attitudes towards disability. implemented through the combined efforts of people with disabilities themselves, their Body functions families, organizations, and communities, and the relevant governmental and nongov- In the ICF the physiological functions of ernmental health, education, vocational, body systems. Body refers to the human social, and other services. organism as a whole and this includes the brain. The ICF classifies body functions CBR worker (community-based under several areas including mental func- rehabilitation worker) tions, sensory functions and pain, voice and speech functions, and neuromusculo- CBR workers may be paid employees or vol- skeletal and movement-related functions. unteers. They carry out a range of activities within CBR programmes including identi- Body structures fication of people with disabilities, support for families, and referral to relevant services. In the ICF the structural or anatomical parts of the body such as organs, limbs, Condition – primary and their components classified according to body systems. A person’s main health condition that may be associated with impairment and disability. Braille Condition – secondary A system of writing for individuals who are visually impaired that uses letters, num- An additional health condition that arises bers, and punctuation marks made up of from the increased susceptibility to a con- raised dot patterns. dition caused by the primary condition – though it may not occur in every individual Capacity with that primary condition. A construct within the ICF that indicates Condition – co-morbid the highest probable level of function- ing that a person may achieve, measured An additional health condition that is inde- in a uniform or standard environment: pendent of and unrelated to the primary reflects the environmentally adjusted health condition. ability of the individual. 302 Glossary Conditional cash transfer Disability discrimination Cash payments to targeted eligible house- Any distinction, exclusion, or restriction holds conditional on measurable behaviour. on the basis of disability that has the pur- pose or effect of impairing or nullifying the Contextual factors recognition, enjoyment, or exercise on an equal basis with others, of all human rights Factors that together constitute the com- and fundamental freedoms: includes denial plete context of an individual’s life, and in of reasonable accommodation. particular the background against which health states are classified in the ICF. There Disability management are two components of contextual factors: environmental factors and personal factors. Interventions and case management strat- egies used to address the needs of people De-institutionalization with disabilities who had experience of work before the onset of disability. The key Refers to the transfer of people with dis- elements are often effective case manage- abilities or other groups from institutional ment, supervisor education, workplace care, to life in the community. accommodation, and early return to work with appropriate supports. Digital divide Disabled people’s organizations Refers to the gap between individuals, households, businesses, and geographic Organizations or assemblies established to areas at different socioeconomic levels with promote the human rights of disabled people, regard to both their opportunities to access where most the members as well as the gov- information and communication technol- erning body are persons with disabilities. ogies and to their use of the Internet for a wide variety of activities. Early intervention Disability Involves strategies which aim to intervene early in the life of a problem and provide In the ICF, an umbrella term for impair- individually tailored solutions. It typically ments, activity limitations, and participa- focuses on populations at a higher risk of tion restrictions, denoting the negative developing problems, or on families that aspects of the interaction between an indi- are experiencing problems that have not vidual (with a health condition) and that yet become well established or entrenched. individual’s contextual factors (environ- mental and personal factors). 303 World report on disability 2011 Education – inclusive Facilitators Education which is based on the right of all Factors in a person’s environment that, learners to a quality education that meets through their absence or presence, improve basic learning needs and enriches lives. functioning and reduce disability – for exam- Focusing particularly on vulnerable and ple, an accessible environment, available marginalized groups, it seeks to develop assistive technology, inclusive attitudes, and the full potential of every individual. legislation. Facilitators can prevent impair- ments or activity limitations from becoming Education – special participation restrictions, since the actual performance of an action is enhanced, Includes children with other needs – for despite the person’s problem with capacity. example, through disadvantages resulting from gender, ethnicity, poverty, learning Frail elderly difficulties, or disability – related to their difficulty to learn or access education com- Older persons (usually over 75 years old) pared with other children of the same age. who have a health condition that may inter- In high-income countries this category can fere with the ability to independently per- also include children identified as “gifted and form activities of daily living. talented”. Also referred to as special needs education and special education needs. Functioning Enabling environments An umbrella term in the ICF for body func- tions, body structures, activities, and par- Environments which support participation ticipation. It denotes the positive aspects by removing barriers and providing enablers. of the interaction between an individual (with a health condition) and that indi- Environmental factors vidual’s contextual factors (environmental and personal factors). A component of contextual factors within the ICF, referring to the physical, social, and Global Burden of Disease (GBD) attitudinal environment in which people live and conduct their lives – for example, A measurement of impact of disease com- products and technology, the natural envi- bining years of life lost to premature mor- ronment, support and relationships, atti- tality plus years of life lost to time lived in tudes, and services, systems, and policies. states of less than full health, measured by disability-adjusted life-years. Equalization of opportunities Health The process through which the various sys- tems of society and the environment, such A state of well-being, achieved through as services, activities, information, and the interaction of an individual’s physical, documentation, are made available to all, mental, emotional, and social states. particularly to persons with disabilities. 304 Glossary Health conditions Informal care In the ICF an umbrella term for dis- Assistance or support given by a family ease (acute or chronic), disorder, injury, member, friend, neighbour, or volunteer, or trauma. A health condition may also without pay. include other circumstances such as preg- nancy, ageing, stress, congenital anomaly, Informal economy or genetic predisposition. Economic activity that is neither taxed Health promotion nor regulated by a government and not included in that government’s gross The process of enabling people to increase national product. control over, and improve, their health. Institution Impairment Any place in which persons with disabili- In the ICF loss or abnormality in body ties, older people, or children live together structure or physiological function (includ- away from their families. Implicitly, a ing mental functions), where abnormality place in which people do not exercise full means significant variation from estab- control over their lives and their day-to- lished statistical norms. day activities. An institution is not defined merely by its size. Incidence Intellectual impairment The number of new cases during a speci- fied time period A state of arrested or incomplete develop- ment of mind, which means that the person Inclusive society can have difficulties understanding, learn- ing, and remembering new things, and in One that freely accommodates any person applying that learning to new situations. with a disability without restrictions or Also known as intellectual disabilities, limitations. learning disabilities, learning difficulties, and formerly as mental retardation or Independent living mental handicap. Independent living is a philosophy and a movement of people with disabilities, based on the right to live in the community but including self-determination, equal oppor- tunities, and self-respect. 305 World report on disability 2011 International Classification Microfinance programmes of Functioning, Disability Small-scale funding for small business and Health (ICF) start-ups that can provide an alternative to formal employment. The classification that provides a unified and standard language and framework for Millennium Development the description of health and health-related Goals (MDGs) states. ICF is part of the “family” of inter- national classifications developed by the Eight quantified targets, set out in the World Health Organization. Millennium Declaration, for attainment by 2015, comprising end to poverty and hunger, Measure universal education, gender equality, child health, maternal health, combating HIV/ In the ICF an activity or set of activities AIDS, environmental sustainability, and aimed at improving body functions, body global partnership. structures, activities, and participation by intervening at the level of the individual, Mixed economy of care person, or society. A variety of suppliers from different sectors Mainstream services (public, private, voluntary, mixed) provid- ing health care to one population Services available to any member of a pop- ulation, regardless of whether they have Morbidity a disability – for example, public trans- port, education and training, labour and The state of poor health. Morbidity rate is employment services, housing, health and the number of illnesses or cases of disease income support systems. in a population. Margin of health Nongovernmental organization (NGO) The level of vulnerability to health prob- lems. For example, the risk of developing An organization, with no participation secondary conditions or the risk of experi- or representation by government, which encing health conditions earlier in life. works for the benefits of its members or of other members of the population, also Mental health condition known as a civil society organization. A health condition characterized by altera- Occupational therapy tions in thinking, mood, or behaviour associated with distress or interference Promoting health and well-being through with personal functions. Also known as occupation. The primary goal of occupa- mental illness, mental disorders, psycho- tional therapy is to enable people to par- social disability. ticipate in the activities of everyday life. 306 Glossary Occupational therapists achieve this out- Physiotherapy come by enabling people to do things that will enhance their ability to participate, or Provides services to individuals to develop, by modifying the environment to better maintain, and maximize movement poten- support participation. tial and functional ability throughout the lifespan. Also known as physical therapy. Participation Prevalence In the ICF, a person’s involvement in a life situation, representing the societal per- All the new and old cases of an event, disease, spective of functioning. or disability in a given population and time. Performance Prosthetist–orthotist A construct within the ICF that describes Provide prosthetic and orthotic care and what individuals do in their current envi- other mobility devices aimed at improving ronment, including their involvement in functioning in people with physical impair- life situations. The current environment is ments. Orthotic care involves external described using environmental factors. appliances designed to support, straighten or improve the functioning of a body part; Personal assistant prosthetic interventions involve an artifi- cial external replacement for a body part. An individual who supports or assists a person with disability and is answerable Psychologist to them directly. A professional specializing in diagnosing Personal factors and treating diseases of the brain, emotional disturbance, and behaviour problems, more A component of contextual factors within often through therapy than medication. the ICF that relate to the individual – for example, age, gender, social status, and Quality of life life experiences. An individual’s perception of their posi- Physical and rehabilitation tion in life in the context of the culture and medicine doctors value systems in which they live, and in relation to their goals, expectations, stand- Carry out services to diagnose health con- ards, and concerns. It is a broad-ranging ditions, assess functioning and prescribe concept, incorporating in a complex way medical and technological interventions the person’s physical health, psychological that treat health conditions and opti- state, level of independence, social relation- mize functional capacity. Also known as ships, personal beliefs, and relationship to physiatrists. environmental factors that affect them. 307 World report on disability Quota Schools – integrated In the context of employment, quota or res- Schools that provide separate classes and ervation is an obligation to employ a fixed additional resources for children with number or fixed proportion of people from disabilities, which are attached to main- a particular group. stream schools. Reasonable accommodation Schools – special Necessary and appropriate modification Schools that provide highly specialized and adjustment not imposing a dispropor- services for children with disabilities and tionate or undue burden, where needed in a remain separate from broader educational particular case, to ensure that persons with institutions; also called segregated schools. disabilities enjoy or exercise, on an equal basis with others, all human rights and Screen-reader software fundamental freedoms. Screen readers are a form of assistive tech- Rehabilitation nology potentially useful to people who are blind, visually impaired, illiterate, or A set of measures that assists individuals have specific learning difficulties. Screen- who experience or are likely to experience readers attempt to identify and interpret disability to achieve and maintain opti- what is being displayed on the screen and mal functioning in interaction with their represent to the user with text-to-speech, environment. sound icons, or a Braille output device. Reservation wage Sheltered employment The lowest wage at which a person is will- Employment in an enterprise established ing to work. specifically for the employment of per- sons with disabilities, but which may also Risk factor employ nondisabled people. A risk factor is an attribute or exposure that Sign language interpreter is causally associated with an increased probability of a disease or injury. A sign-language interpreter is a person trained to interpret information from sign Schools – inclusive language into speech and vice versa. Sign languages vary across the world. Children with disabilities attend regular classes with age-appropriate peers, learn Social firm the curriculum to the extent feasible, and are provided with additional resources and A business set up to create employment support depending on need. for persons with disabilities or those who are otherwise disadvantaged in the labour market. 308 Glossary Social assistance Supported employment Noncontributory transfers targeted at the Supported job placements providing the poor or vulnerable. These may include food opportunity for integration in the main- or jobs instead of, or as well as, cash and stream workforce. may include compliance conditions (condi- tional cash transfers). Therapy Social protection The activities and interventions concerned with restoring and compensating for loss Programmes to reduce deprivation arising of function, and preventing or slowing from conditions such as poverty, unem- deterioration in functioning in every area ployment, old age, and disability. of a person’s life. Social worker Universal design Professional social workers restore or The design of products, environments, enhance the capacity of individuals or programmes, and services to be usable groups to function well in society, and help by all people, to the greatest extent pos- society accommodate their needs. sible, without the need for adaptation or specialized design. Specific learning disability Vocational rehabilitation Impairments in information processing and training resulting in difficulties in listening, reason- ing, speaking, reading, writing, spelling, Programmes designed to restore or develop or doing mathematical calculations – for the capabilities of people with disabilities example, dyslexia. to secure, retain and advance in suitable employment – for example, job training, Speech and language therapy job counselling, and job placement services. Aimed at restoring people’s capacity to communicate effectively and to swallow safely and efficiently. 309 Index [A] Age-related conditions, vulnerability to 59 Aboriginal Australians 104–105 Albania 11 Abuse 146, 147, 216 Alcohol use disorders 297 Academic institutions, recommendations for 269 Americans with Disabilities Act, 1990, United States Accessibility 65, 169–170, 263 173, 187, 188, 213, 241 addressing barriers 172–183, 186–193 Amputees 75, 184 adopting universal design 177–178, 181–182 Animals, assistance 139 audits 175, 176, 177 Appointment systems 74 buildings and roads 172–178 Appropriate technology 111, 301 defined 170, 301 Architecture, schools of 176 education and campaigns 176, 177, 183, 193 information and communication technology 169–172, Argentina 37, 145 183–193 Armenia 171 lead agency 175 Arthritis 33, 297 monitoring 175–176, 193 Assessment policies 173, 179 defined 301 progressive realization 173, 179 disability 11 recommendations 193–195 individual needs 150–151 transportation 170, 178–183 within schools 220 work and employment 239 Assistance and support 137–159 Accessibility standards addressing barriers to 147–156 defined 301 assessing individual needs 150–151 enforcing 175 barriers to 144–147 improving 173–175 building capacity of caregivers and service users 155, 158 non-compliance 173 determinants of need 139 recommendations 193, 194–195 funding 142, 144, 149–150, 157–158 Accommodations, reasonable, see Reasonable needs and unmet needs 40–41, 42, 139–140 accommodations policies 145, 156 Action plans, national, see National disability strategies provision 142–144 range of interventions 138–139 and action plans recommendations 157–159, 265 Activity 301 within schools 221, 227 Activity limitations 5, 301 social and demographic factors affecting 140–141 measuring 22–23, 97 Assistance and support services 137 Advocates 137, 154, 155 commissioning 149 Affect, difficulties with 289 consumer-directed 152–153, 158 Affirmative action 241, 301 coordination 145–147, 152–155 Affordability developing infrastructure 157–158 general health care 65, 66–70, 82 formal 142–143, 157 improving 266 improving quality 159 rehabilitation 106–108, 117–119 inadequate and unresponsive 145 Affordable Care Act, 2010, United States 67 informal see Informal care Afghanistan 33, 109–110 institutional see Institutional care Ageing support for users 155, 158 family caregivers 142 types 139 global population 34–35, 36, 140 user involvement 153–154 311 World report on disability Assistance animals 139 Bolivia 145, 208 Assistive devices/technology 101 Bosnia and Herzegovina 40, 43, 142 defined 301 Botswana 118, 120 funding difficulties 106–107 Braille 172, 302 increasing affordability 117–118, 123 Brazil 11, 22, 33 pace of change 186 access to health care 70, 75 Asthma 297 assistance and support 154–155 Attitudes, negative, see Negative attitudes education 218, 219 Audits, accessibility 175, 176, 177 enabling environments 173, 180, 181, 182 Augmentative and alternative communication 172, rehabilitation programs 115 301 work and employment 240, 241, 244, 249 Australia 4–6, 35, 39, 43 Budapest Initiative on Measuring Health Status assistance and support 41, 139, 142, 143–144, 152–153, 283–284 154, 156 Buildings 172–178 education 220 emergency evacuations 178 enabling environments 173, 186, 187, 189–190, 191 improving accessibility 173–178 foreign aid 107, 264 lack of access 170, 172–173 general health care 61, 73, 75, 77, 79 recommendations 194 health risk behaviours 59 Bulgaria 208, 209, 211 noncommunicable chronic diseases 33 Bullying 216 rehabilitation 104–105, 108 Burkina Faso 207 work and employment 238, 240, 242, 246, 249 Burundi 208 Austria 211, 238, 244 Bus rapid transit systems 181, 182 Autistic spectrum disorders 120–121 Bus systems 180–181 Autonomy, lack of 9 Availability 65 [C] Cambodia [B] education and training 207, 208, 246 Back problems 33 rehabilitation 105–106, 110, 112, 113 Bangladesh Canada 33, 44, 108 education 208, 214 assistance and support 139, 143, 152–153, 154 financial assistance 11, 70 education 219, 220 general health care 60 enabling environments 176, 187, 189–190 political participation 171 work and employment 238, 240, 244 rehabilitation 101, 117, 246 Cancer screening 60–61, 71 risk trends 37 Capabilities approach, Amartya Sen 10–11 Barriers 6, 262–263 Capacity 5, 302 assistance and support 144–147 legal 78 defined 302 measuring effect of environment 38 education of disabled children 212–216 Captioning 184, 187, 188, 190 general health care 62–64 information and communication 170–172, 178, 183–186 Care coordination 76–77 physical environment 170, 172–173, 178–179 Care plan, individualized 77 rehabilitation 104–105 Care Quality Commission, United Kingdom 151 work and employment 239–240 Caregivers Belgium 34, 147, 210, 211, 244 formal see Support workers, personal Belize 219 informal see Informal caregivers Benefit trap 237 Cash transfers conditional 70, 303 Benefits payments, disability 11, 43, 248–249 unconditional 70 Bio-psycho-social model 4 Catastrophic health expenditure 67, 69 Blindness, see Visual impairment CBR, see Community-based rehabilitation Body functions 302 CBR Guidelines 13 Body structures 302 312 Index Censuses 22, 23, 45, 267 Community home-based care 156 Center for Justice and International Law (CEJIL) 146 Community support (services) 139, 157 Cerebral palsy 60, 98, 101, 156 cost comparisons 148–149 Cerebrovascular disease 297 inadequacy 145 Chad 208 transition to 147–148, 157 Children 36–37 unmet needs 140 assistance and support 139, 143, 156 Community-based rehabilitation (CBR) 6–7, 13, 73, disability prevalence 29, 30, 36, 262 114–117 disability risk factors 36–37 Deaf people 141 of disabled parents 142 defined 302 education see under Education developing 156 health conditions 33 inclusive education and 223–224, 227 measuring disability 24, 36 limited resources and infrastructure 104 rehabilitation 97, 98, 101, 102, 117 vocational training 246 risk of unintentional injury 60 workers 111, 302 views on education 225 Community-based services Chile 40, 218, 219 general health care 71, 75 China 11, 37, 41, 103 mental health 106, 146 assistance and support 140, 144, 147, 148 vocational rehabilitation 246 enabling environments 181, 190, 192 Co-morbid conditions 32, 58, 59, 302 rehabilitation 110, 112, 117–118 Computers 172, 184 work and employment 242, 244 Conditional cash transfers 70, 303 Chronic diseases, noncommunicable 33 Conflicts, armed 34, 108 Chronic obstructive pulmonary disease 61, 114, 297 Consensus-based practice guidance 120 Circles of support 154 Consultation, lack of 263 Clubfoot 99, 114 Consumer health informatics 77 Cognitive impairment (see also Dementia; Intellectual Consumer-directed support services 152–153, 158 impairment) Contextual factors 303 enabling environments 174, 184 Continuing education and professional development rehabilitation 101 79, 113 World Health Survey 289 Continuity of training 246 Collaboration, intersectoral 105–106 Convention on the Rights of Persons with Disabilities Colombia (CRPD) 3, 9–10, 261 disability assessment 150 accessibility standards 175 education 208, 219 assistance and support 11, 137, 138 enabling environments 181, 190 conception of disability 4 general health care 69, 76 education of disabled people 205, 206 Commission on Social Determinants of Health, WHO 4 general health care 8, 65 Communication general principles 9 accessible 170–172 legal capacity 78 alternative formats 74 political rights 171 assistive technologies 101 rehabilitation 95 defined 170 work and employment 235, 243 difficulties 72, 170–172 Convention on the Rights of the Child (1989) 9 within health care sector 104–105 Conversion handicap 10 between service providers 72, 77 Coordination support 139, 140 assistance and support services 145–147, 152–155 technology see Information and communication general health care 76–77 technology multidisciplinary rehabilitation services 114 Communications Act 1996, United States 188 Co-payments 149 Communities Co-produced support services 154 lack of participation 263 Costa Rica 219 recommendations for 270 role in education 223–224 313 World report on disability Costs Development organizations, recommendations for education of disabled children 214–215 268–269 information and communication technology 185–186 Developmental disabilities, see Intellectual impairment institutional and community services 148–149 Dexterity impairments 184, 185 social assistance benefits 248 Diabetes 59, 61, 75, 97 Costs of disability 42–44, 266 Differential Item Functioning (DIF) 290 as cause of poverty 39–40 Difficulties in functioning direct 43 prevalence 24–32, 44 extra costs of living 10, 43 World Health Survey respondents 289–290 indirect 44 need for better data 47 Digital accessibility and inclusion index 186 Credit markets 239 Digital divide 172, 303 Croatia 103 Dignity 9, 236 Cuba 150 Direct care workers, see Support workers, personal Curb cuts 174, 182–183 Disability 3–13, 261–262 concept 3–4 Curriculum content 79, 112, 215 defined 4, 5, 303 Cyprus 210, 211 as a development issue 10–13 Czech Republic 38, 103, 211 diversity 7–8, 262 environmental factors 4–7 [D] human rights 9–10 DAISY (Digital Accessible Information SYstem) 189 major causes 32–34, 296, 297 Data measuring 21–24 general health care 80–81, 83 prevalence see Prevalence of disability improving comparability 46 prevention 8 lack of 263 threshold for 26–27, 29–31, 290–292, 293–294 rehabilitation 121 Disability Act, 1995, India 171 Data collection Disability Action Council, Cambodia 105–106 ICF framework 25, 31–32, 45 Disability-adjusted life-years (DALYs) 28, 295 recommendations 45–46, 267 Disability discrimination 6, 147 work and employment 251 defined 303 Deafness, see Hearing impairment by employers 240 Decentralization, rehabilitation services 114–117 legislation 9, 235, 240–241 Decision-making, supported 138, 158 Disability Discrimination Act, 2005, United Kingdom 6, Deinstitutionalization 147–148, 157 173, 241 cost comparisons 148–149 Disability Discrimination Act, 2007, Republic of Korea defined 303 187 mental health patients 106, 146 outcomes 148 Disability management 244–245, 303 Demand-responsive transport 178, 179–180 Disability Rights International (DRI) 146 Dementia 59, 147, 297 (see also Cognitive impairment) Disability weights 28, 29, 295 Demographics 34–37, 140 Disabled Children’s Action Group, South Africa 143 Denmark Disabled people’s organizations 147, 303 assistance and support 148 information and communication technology and education 211, 218 192–193 enabling environments 173, 181, 187 microfinance programmes 247–248 work and employment 241, 244 recommendations for 252, 269 role in education 225 Dental care 61 state support for 69–70, 151, 152 Depression 58, 60, 297 support for service users 155 Design reviews, buildings 175 Disasters 108, 173, 174, 178 Developed countries, see High-income countries Discrimination, see Disability discrimination Developing countries, see Low- and middle-income Diversity of disability 7–8, 262 countries Djibouti 214 Development, disability and 10–13 Down syndrome 59, 73 Development aid 107–108, 264 Drug dependence and problem use 297 314 Index [E] health insurance availability 67 E-accessibility toolkit 186 impact of disability 10 Early interventions 246, 303 importance 236 Earthquakes 116 misconceptions about disability 240 opportunities of caregivers 142 Economy quotas 241–242, 308 formal 236 recommendations 250–252 informal 236 sheltered 243, 308 Ecuador 171, 181 supported 139, 242–243, 309 Education (see also Schools; Training) tailored interventions 241–245 children with disabilities 39, 205–227 types 238–239 addressing barriers 216–225 Employment agencies 243–244 approaches to delivery 210–211 Employment rates 236, 237, 238, 263 assistance and support 139 barriers 212–216 Employment ratios 236, 238 legislation, policies, targets and plans 214, 216–217 Employment services 235 ministerial responsibility 212–214, 217 Empowerment 147 outcomes 211–212, 213–214, 263 Enabling environments 169–195, 304 (see also participation rates 10, 206–208 Accessibility) recommendations 225–227 Environmental factors 4–7 resources/funding 214–215, 218–220 defined 304 rights and frameworks 206 effect on health conditions 37, 38 role of communities, families and disabled people ICF emphasis 5 223–225 measuring effect on disability 38 terminology 209–210 need for better data 46 health care workers 78–79 Epilepsy 72–73 inclusive 209–210, 226–227, 304 Equalization of opportunities 304 rehabilitation personnel 108, 110–111 Estonia 211 school teachers 215 Ethiopia 110, 193, 207–208, 214, 222, 247 special (needs) 209, 210, 304 European Agency for Development in Special Needs work and employment and 239 Education 211, 220, 225 Education for All (EFA) 205, 206, 215 Fast Track Initiative Partnership 214 European Concept for Accessibility Network 175 national plans 217–218 European Quality in Social Services 154 Educational/awareness campaigns 6, 7, 267 European Statistical System (ESS) 283 enabling environments 176, 177, 183, 193, 194 European Union 190–191, 241 HIV/AIDS prevention 74 Evidence, lack of 263 work and employment 249 Evidence-based practice, rehabilitation 120–121, 123 Egypt 37 Exercise therapy 100, 101 El Salvador 110, 111, 214, 215, 221 Elderly people, see Older persons [F] Electoral participation 171 Facilitators 76, 304 Electronic medical records 77 Families caregivers see Informal caregivers Emergency situations 178, 188, 190 involvement in health service delivery 75–76 Emigration, health care workers 113 providing support for 153, 158 Employers recommendations for 270 attitudes 239–240, 249–250, 251 role in education 224–225 disability discrimination 240 Females incentives to 242 barriers to health care 63 recommendations to 251 with disabilities 8, 12 Employers’ Forum on Disability, United Kingdom 249, prevalence of disability 28, 30, 31 250 rehabilitation professions 109–110 Employment 39, 235–252 (see also Labour market) Ferries 178 accessibility 239 Fiji Paralympic Committee (FPC) 223 addressing barriers 240–250 barriers 239–240 315 World report on disability Financial incentives [H] employers 242 Habilitation 96 skilled personnel 113 Haiti 104, 107, 216, 223 Financing/funding Health assistance and support 142, 144, 149–150, 157–158 defined 57, 304 education 215, 218–220 inequalities 61, 65 general health care 66–70, 82 margin of 57, 306 difficulties in access to 67, 68 people with disabilities 57–63, 263 options 67–69 Health care, general 57–83 targeted to disabled people 69–70 addressing barriers to 62–81 inadequacies 262 needs and unmet needs 58, 60–62 informal caregivers 153 recommendations 81–83 recommendations 266 Health care providers rehabilitation 106–108, 122 communication issues 72, 77 small businesses 239, 246–248 incentives to 70 Finland reasonable accommodations 73, 74 education 211, 218, 221 Health care workers 77–80 enabling environments 180, 190 attitudes and misconceptions 77–78 hearing aid use 118 education and training 78–79 work and employment 244 recommendations 83 Flexible transport systems (FTS) 180 recruitment and retention 112–113 Formal economy 236 resources for 80 Frail elderly 304 training in rehabilitation 111–112 France 79, 211, 243 Health conditions 5, 32–34 Functioning 304 (see also Difficulties in functioning) co-morbid 32, 58, 59, 302 Funding, see Financing/funding defined 305 disability prevalence by 297 [G] diversity 7–8 G3ict 186 effect of environment 37, 38 Gambia 72–73 need for better data 47 Gaza 34 poverty related 10 Gender differences prevention 8 barriers to health care 62–64 primary 57–58, 302 disability prevalence 28, 30, 31 research needs 81 educational participation 206, 207 risk trends 37 Georgia 209 secondary 58–59, 302 trends 32–34 Germany 38, 41, 107, 147 accessibility 70–71, 171 Health facilities education 210, 211 barriers to 70–71 work and employment 238, 240, 241, 242, 248–249 structural modifications 74 Ghana 37, 72, 104, 108, 214, 240 Health information systems 104–105 Global Alliance for ICT and Development 186 Health insurance difficulties in access to 67, 68 Global Burden of Disease (GBD) 28–31, 261–262, 304 private 67 compared to World Health Survey 29–31, 292–293 providing affordable 69 methodology 295–297 rehabilitation coverage 107, 108 Global care chain 145 social 67 Global disability prevalence 25–31, 44, 291, 292, 296, Health promotion 60–61, 73, 305 297 Health risk behaviours 59 Governments, recommendations for 251, 268 Health services Greece 147, 211 barriers to access 6, 61, 62–64 Guatemala 8 barriers to delivery 70–77 Guidelines, good practice 80, 120–121 coordination 76–77 Guyana 104, 219 people-centred 75–76 provision 4–6 316 Index reasonable accommodations 73, 74 Independent living 139, 263, 305 research 80–81 mechanisms for 154–155 specialist 73–75 unmet needs 140 Healthy People 2010 65 Independent living trusts, user controlled 154 Hearing aids 101, 102, 118, 188 Hearing impairment 26, 72 India 33 assistance and support 137, 140, 141 assistance and support 144, 146, 151, 156 disability prevalence 297 community-based rehabilitation 6–7, 13, 116, 117 education of children 207, 211, 212, 214, 216, 227 education 207, 208, 214, 215 information and communication technology 170–172, enabling environments 171, 173, 174, 177, 180, 181 184, 186, 190, 191, 192 general health care 63, 70, 75, 79 rehabilitation 97, 101, 102 information and communication technology 190, Heart disease 33, 61, 297 192–193 High-income countries leprosy campaigns 7 assistance and support 139–140, 143, 144, 150, 152–153 rehabilitation personnel 108, 109, 110, 112 costs of disability 43 rehabilitation services 107, 108, 116 education of disabled children 207, 210, 219 work and employment 238, 239, 244, 246, 247, 249 enabling environments 181 Individual differences, recognizing and addressing general health care 60, 62, 63–64, 66, 67, 71 220–221 needs for services and assistance 41 Individuals with Disabilities Education Act (IDEA), population ageing 35, 36 United States 213 poverty and disability 39 Indonesia 110, 207, 208 prevalence of disability 27, 28, 30, 31 Inequalities 9 rehabilitation 107, 108–109, 110 work and employment 238, 242 Infectious diseases 32–33 HIV/AIDS 32, 74, 156, 249 Infit Mean Squares (MNSQ) 290 Home aides, see Support workers, personal Informal care 139, 143, 157 defined 305 Housing adaptations 100 factors affecting availability 140–141 Human resources Informal caregivers assistance and support 144–145 adverse consequences for 141–142 general health care 77–80, 83 ageing 142 improving capacity 266 factors affecting availability 140–141 maximizing 236 involvement in health service delivery 75–76 rehabilitation 108–113, 122 providing support for 153, 158 Human rights 9–10, 146 Informal economy 236, 305 Humanitarian crises 34, 108 Information, lack of 147 Hungary 103, 211, 218, 248 Information and advice services 139 Information and communication technology (ICT) 77, [I] 169–170, 183–193 Iceland 39, 211 action by industry 191–192 ICF, see International Classification of Functioning, barriers 170–172, 178, 183–186 Disability and Health costs 185–186 Illinois Home Based Support Services Program 152 inaccessibility 184–185 Immunizations 37, 60 lack of access 172 Impairments 5 laws and regulations 185, 186–188 defined 305 nongovernmental organizations and 192–193 measuring 21–22 overcoming barriers 186–193 Incidence 305 pace of change 186 Inclusive education 209–210, 226–227, 304 policy and programmes 189–190 Inclusive international cooperation 264 procurement 188, 190–191 recommendations 195 Inclusive schools 210–211, 308 schools 220–221, 222 Inclusive society 305 standards 185, 188–189 Income support 70 universal design 191 317 World report on disability Information campaigns, see Educational/awareness [J] campaigns Jamaica 208, 247 Injuries, traumatic 34, 297 Japan higher risk 60 assistance and support 153 rehabilitation programs 115 enabling environments 181, 186, 190, 191 Inspections, buildings 175 foreign aid 107 Institution, defined 305 work and employment 237, 238 Institutional care 145, 146 (see also Deinstitutionalization) [K] cost comparisons 148–149 Kenya 140, 214, 224 development of alternatives 106, 147–148, 157 KeyRing 154 Insurance, health, see Health insurance Korea, Republic of 39, 72, 187, 223 Intellectual impairment 8, 33 Kosovo 171 assistance and support 143, 147, 148–149, 152, 154, 156 defined 305 [L] education 211, 212, 213–214 Labelling 215–216 general health care 72, 73, 75 Labour force 236 information and communication technology 172, 191 premature death 60, 61 Labour force participation rate 236 risk of secondary conditions 59, 60 Labour laws, overprotective 240 work and employment 237, 242 Labour market 235–252 (see also Employment; Work) International Classification of Functioning, Disability and addressing barriers 240–250 barriers 239–240 Health (ICF) 5, 306 laws and regulations 240–241, 251 conception of disability 4, 5 participation 236–238 framework for data collection 25, 31–32, 45 recommendations 250–252 studies on met and unmet needs 41 International cooperation, inclusive 264 Lao People’s Democratic Republic 217, 220 International Foundation for Electoral Systems 171 Laws and regulations accessibility 173, 175, 178, 179 International Labour Organization (ILO) 237, 246 disability discrimination 9, 235, 240–241 International Organization for Standardization education of disabled children 214, 217 174–175 general health care 65, 82 International Telecommunications Union (ITU) 186 information and communication technology 185, Internet 186–188 access to 172, 183, 185–186 rehabilitation 104–105, 106, 122 accessibility of content 183–185, 187, 189, 190, 191 social care providers 151 rehabilitation databases 120 work and employment 240–241, 251 rehabilitation technologies 118–119 Lead agency, accessibility 175 self-management programmes 77 Learning disabilities, see Intellectual impairment Interpersonal relationships, difficulties with 289 Learning disability, specific 309 Involvement of disabled people 263, 265–266, 270 Learning support assistants 221 assistance and support services 153–154 Least restrictive environment principle 209 health management 75, 76 Lebanon 110, 225 Iodine consumption 37 Legislation, see Laws and regulations Iran 37 Leprosy 7, 33, 249 Iraq 140, 171 Leprosy Mission, India 246, 247 Ireland 23, 39, 43, 152, 190, 211 Lesotho 23, 156, 217 Israel 241 Lifts 180–181 Italy 38, 107, 190 Linkage studies 46 community-based rehabilitation 117 education 217 Lithuania 210, 211 mental health law reform 106 Livelihood 236 work and employment 242, 248 Longitudinal studies 46, 121 Item Response Theory (IRT) 290, 293 318 Index Low- and middle-income countries Mental health services 62 assistance and support 144, 149, 154–155 access to 67, 71, 75 children at risk of disability 36–37 reform 106, 146 disability prevalence 27, 28, 30, 31 Mentoring 246 education 207, 220 Mexico 37, 39, 190 emigration of skilled personnel 113 assistance and support 140, 150 enabling environments 173, 174, 181–182 education 218, 219 general health care 60, 62, 63–64, 66, 67 work and employment 238 measuring disability 22–23, 25 Microfinance programmes 246–248, 252, 306 needs for services and assistance 41 Migrants, as personal support workers 145 population ageing 35, 36 Millennium Development Goals (MDGs) 12, 306 poverty and disability 39–40 education 205, 206 rehabilitation 99, 107–109, 110–111 service delivery 71, 73 Mixed economy of care 152, 306 work and employment 238, 245 Mobile phones 185, 191, 192 Low birth weight 37 Mobility impairments accessibility standards 174 Luxembourg 211 assistive devices 101 World Health Survey 289 [M] Mobility India 13, 112 Madagascar 33, 140 Moderate and severe disability Mainstream schools 209–211, 221, 222–223 children 30, 36 Mainstream services 264–265, 306 defined 296 Mainstream vocational training 245–246 gender differences 30, 31 Mainstreaming 264–265 prevalence 29, 30, 296, 297 Malaria 32–33 Moldova, Republic of 153, 208, 209 Malawi 23, 40, 103 Mongolia 208, 223 clubfoot treatment 99 Monitoring, accessibility 175–176, 193 educational participation 207 Morbidity 306 need for services 41, 42 Morocco 41 resource directory 80 Mortality rates 60, 61 work and employment 237, 238 Mozambique Malaysia 175, 176, 245 disability studies 23, 103 Males education 208, 214, 222 barriers to health care 63 HIV/AIDS prevention 74 prevalence of disability 28, 30, 31 leprosy 33 Malta 210, 211 Multidisciplinary rehabilitation services 114 Margin of health 57, 306 Multiple Indicator Cluster Surveys (MICS), UNICEF Measure 306 36–37 Measurement of disability 21–24 Musculoskeletal impairment 102 Medical equipment 71, 74 Myanmar 110 Medical model 4 Medical training 78, 79 [N] Medicare, United States 69 Namibia 40, 41, 42, 103, 207 Men, see Males National Council on Disability, United States 175 Mental handicap, see Intellectual impairment National disability statistics 25, 31, 271–276 Mental health conditions 8 improving comparability 46 assistance and support 153, 154 recommendations 45–46 barriers to health care 73 standardized approach 25, 26–27 communication needs 172 variability 23, 25 defined 306 National disability strategies and action plans 265 disability prevalence 296, 297 assistance and support 156, 157 negative attitudes 6 education 214, 217–218 premature death 60, 61 rehabilitation 105–106, 122 work and employment 237, 242–243 National Disability Survey (NDS), Ireland 23 319 World report on disability National Informatization Act, 2009, Republic of Korea Ombudsmen, personal 138 187 Oral health care services 61 National Institute of Disability Management and Orthotics 102 Research, Canada 244 Orthotists, see Prosthetists–orthotists National Longitudinal Transition Study 2 (NLTS2), Osteoporosis 59 United States 213–214 Out-of-pocket payments 70 National Trust Act, India 151 Natural disasters 108, 173 [P] Needs and unmet needs Pain 58–59, 289 health care 60–62 Pakistan 33, 110, 147, 214, 218 rehabilitation 102–103 Pan American Health Organization (PAHO) 146, services and assistance 40–41, 42, 139–140 282–283 Needs assessment 150 Panama 218, 225 Negative attitudes 6–7, 147, 169, 262 Paraguay 146, 219 education of disabled children 216, 223–225 Parents 224–225, 227 work and employment 239–240, 249–250, 251 Participation, defined 307 Nepal 33, 104, 113, 118, 156, 225 Participation restrictions 5 Netherlands 39, 43, 75 measuring 22–23, 97 assistance and support 147, 150, 151 Pedestrian access 179, 183 assistive devices 107 education 211 Pedicab services 181 work and employment 238, 248–249 Peer training 246 New Zealand 69, 107, 120–121 People with disabilities assistance and support 139, 140, 150, 156 engagement with 105 education 217, 218, 220 involvement see Involvement of disabled people work and employment 240, 243, 249 recommendations for 270 Nicaragua 75, 150, 218, 219 People with Disabilities Act, 2008, Malaysia 176 Nigeria 33, 61, 101, 246 People-centred health services 75–76 Noncommunicable chronic diseases 33 Performance 5, 307 measuring effect of environment 38 Nongovernmental organizations (NGO) 306 assistance and support 143, 144, 151–152, 156 Personal Assistance Reform Act, 1994, Sweden 150 information and communication technology and Personal assistance schemes 150, 152–153, 154–155 192–193 Personal assistants 137, 155, 307 microfinance programmes 247–248 Personal factors 5, 307 recommendations for 252 Personal ombudsmen 138 state support for 69–70, 151–152 Personal support workers, see Support workers, Norway 6, 39, 43, 107 personal assistance and support 147 Persons with Disabilities Act, 1995, India 177 education 210, 211, 225 Peru 171, 219, 238 enabling environments 176 Philippines 145, 155, 190, 247 work and employment 238, 248–249 Physical and rehabilitation medicine doctors 307 Nursing students 79 Physical barriers 169 general health care 70–72 [O] schools 215, 223 Obesity 59 transportation 180–181 Occupational therapists 108, 109 work and employment 239 Occupational therapy 79, 306–307 Physical inactivity 59 Older persons 34–36 Physical therapists 108, 110 assistance and support 139 Physiotherapists 108, 109, 110 barriers to health care 64 Physiotherapy 108, 307 disability prevalence 27, 28, 30, 35–36, 296 Poland 211, 248 rehabilitation services 117 self-reporting of disability 24 320 Index Policies Psychosocial support services, informal caregivers 153 accessibility 173, 179 Public accommodations assistance and support 145, 156 defined 170 education of disabled children 214, 217, 226 improving accessibility 173 general health care 65, 82 lack of access 170, 172, 173 inadequate 262 recommendations 194 inclusive education 210 Public awareness campaigns, see Educational/ information and communication technology 189–190 awareness campaigns mainstream 264–265 Public transportation 170, 178–183 rehabilitation 104–105, 122 Public-private partnerships 108, 152 Polio 33 Political participation 171 [Q] Ponseti clubfoot treatment 99 Qualitative research needs 46–47 Pooled funding 149 Quality of health care 65 Poor people Quality of life 307 disability prevalence 27, 28 Quality of support services, improving 159 financial aid 70 Quotas, employment 241–242, 308 rehabilitation targeting 108 Portugal 190, 210, 211, 225, 241 [R] Poverty 10, 12, 39–40, 263 Radio and Television Broadcasting Act, 2000, Denmark Practice guidelines 80, 120–121 187 Premature death 60, 61 Rail systems 178, 180–181 Prepayment systems 149 Raising the Floor initiative 191 Prevalence, defined 307 Ramps 174, 180, 181, 182–183 Prevalence of disability 24–32, 261–262 Rasch models 290 country-reported 25, 31, 271–276 Reasonable accommodations 9, 264–265 different studies compared 29–32, 292–293 built environment 173 factors affecting estimates 22–24 defined 308 global estimates 25–31, 44, 291, 292, 296, 297 general health care 70, 73, 74 global studies see Global Burden of Disease; World Health schools 221 Survey workplace 241 by health condition 297 labour market and 236 Recruitment, rehabilitation personnel 112–113 need for better data 31–32, 44–47 Referrals use of data 24 general health care 72, 77 Prevention rehabilitation services 105, 114, 117 disability 8 Refractive errors 296, 297 disease 60–61 Refugee camps 173, 174 Primary health care Regulations, see Laws and regulations rehabilitation services 114 Rehabilitation 95–123 rehabilitation training 112 addressing barriers to 103–121 service delivery 72, 73, 75, 76 barriers to 104–105 targeted funding 69–70 defined 96, 308 Primary health conditions 57–58, 302 evidence-based practice 120–121, 123 Primary prevention 8 measures and outcomes 95–97 Private assistance and support services 143, 152 needs and unmet needs 102–103 process 96 Private health insurance 67 recommendations 121–123, 265 Private sector, recommendations for 269 research 119–121, 123 Productivity 44, 237 settings 101–102 Progressive realization strategy 173, 179 technologies 117–119, 123 Prostheses 102 vocational see Vocational rehabilitation and training Prosthetists–orthotists 108, 307 Rehabilitation Act (and amendments), United States education and training 110, 111, 112 188, 189, 190 Psychologists 108, 307 321 World report on disability Rehabilitation doctors 108 School teachers training 111–112 attitudes 216, 222–223 Rehabilitation International 74 special education 221, 222 Rehabilitation medicine 97–100 support 215, 221, 227 Rehabilitation personnel 108–113, 122 training 215, 217, 222–223, 226 community based 111, 302 Schools education and training 108, 110–111 attendance rates 206–208, 209 mid-level 110–111 barriers within 215–216 professional 110 inclusive 210–211, 308 recruiting and retaining 112–113 integrated 308 Rehabilitation services interventions in 220–223 barriers to access 104–105 mainstream 209–211, 221, 222–223 community-based see Community-based rehabilitation physical barriers 215, 223 coordinated multidisciplinary 114 special 210, 211, 226, 308 delivery 114–117, 122–123 support services 221, 227 funding 106–108, 122 years of completed education 206, 207 national plans 105–106 Screening, cancer 60–61, 71 Remote areas, see Rural areas Screen-reader software 186, 191, 308 Reproductive health services 61 Secondary health care settings, rehabilitation 114, 116 Reproductive rights 78 Secondary health conditions 58–59, 302 Republic of Korea 39, 72, 187, 223 Secondary prevention 8 Research Self-advocacy groups 147 disability 46–47, 267–268 Self-care, difficulties with 289 general health care 80–81, 83 Self-employment 246–248 participation in 81 Self-management approaches 75, 76 rehabilitation 119–121, 123 Self-reported disability 23–24 Reservation wage 237, 308 Sen, Amartya 10–11 Residential support services 139, 145 Serbia 149, 151, 153, 173 Respite services 139, 140, 153, 158 Service brokerage 154 Rheumatism 33 Service delivery Rickshaws 181 alternative models 74 Risk factor, defined 308 general health care 70–77, 82–83 Road traffic injuries 34 problems 262 Roads 170, 172–178, 194 rehabilitation 114–117, 122–123 Romania 11, 148, 208, 209 Service providers, recommendations for 269 RUCODE 156 Services (see also Assistance and support services; Rural (and remote) areas Health services; Rehabilitation services) disability prevalence 28 lack of provision 262 education 221 mainstream 264–265, 306 enabling environments 174 needs and unmet needs 40–41, 42 health care services 70 Severe disability rehabilitation personnel 112, 113 children 36 rehabilitation services 103, 114 defined 296 Russian Federation 11, 79, 179 gender differences 31 Rwanda 75, 102, 207, 214, 216 prevalence 29, 30, 44, 261 Sex ratio, disability prevalence 28, 30, 31 [S] Sexual abuse 59 Safety net interventions, social 11, 144 Sexual health services 61 Salamanca Declaration (1994) 206, 215 Sexual rights 78 Sanitation 13, 37 Shared vans 179–180 Schizophrenia 6, 59, 60, 61, 297 Sheltered employment 243, 308 discrimination by employers 240 Sick leave, informal caregivers 153 rehabilitation 97, 117 Sierra Leone 40 research needs 81 Sign language 141, 172, 184, 190 322 Index Sign language interpreters 137, 140, 308 Statistics Singapore 145, 244 global and regional initiatives 281–284 Situation analysis 265 national see National disability statistics Sleep and energy, difficulties with 289 Sterilization, involuntary 78 Slovakia 39, 103 Stigma 6–7, 147 Slovenia 38, 103, 211 Stress 141 Smoking 59 Stroke survivors 147 Social assistance 11, 43, 248–249, 309 Subtitles 187 Social Assistance Act, 2004, South Africa 150 Sudan 110, 140 Social care providers, regulation 151 Support, see Assistance and support Social care workers, see Support workers, personal Support workers, personal 144–145 (see also Personal Social cohesion, promoting 236 assistants) Social firms 242–243, 308 training 155, 158 Social health insurance 67 Supported decision-making 138, 158 Social marketing 6, 7 Supported employment 139, 242–243, 309 Social model 4 Surveys 22–24 Social protection 11, 144, 248–249, 251, 309 recommendations 45, 267 standardization 24 Social workers 108, 309 Socioeconomic status 39–40 Sweden 34, 39, 41, 43, 107 assistance and support 147, 148, 150, 156 South Africa education 211 anti-discrimination laws 240 enabling environments 180, 189–190 assistance and support 40, 70, 143, 150, 153 supported decision-making 138 education 208, 216 Switzerland 211, 218–219, 237, 238, 243 enabling environments 174, 190 rehabilitation 108 work and employment 237, 238, 241–242, 244, 245–246 [T] Southern Africa Federation of the Disabled 225 Taiwan, China 69 Spain 38, 147, 173, 211, 238, 244 Talking books, digital 189 Special (needs) education 209, 210, 304 Tanzania, United Republic of 74, 110, 140, 181 Special education teachers 221, 222 Targeted interventions 73, 74 Special needs assistants 221 Taxis, accessible 178, 180 Special schools 210, 211, 226 Teachers, school, see School teachers Special transport services (STS) 178, 179–180 Teaching assistants 221, 227 Specialist health care 58, 73–75 Telecommunications Speech and language therapy 309 accessibility 184, 186, 188, 189–190 regulation 185, 186, 187 Speech impairments universal design features 191 information and communication technology 172, 184, 190 Telemedicine 77 rehabilitation 101, 108 Telephones 184, 187, 188, 189–190, 191 Sphere Handbook 174 Telerehabilitation 118–119, 123 Spinal cord injuries 58, 60, 76, 115, 246 Television 184–185, 187, 188, 190 Sport activities, inclusive 223 Television Decoder Circuitry Act, 1990, United States Sri Lanka 35, 110, 189, 190, 249 187, 188 Standard Rules on the Equalization of Opportunities for Tertiary health care settings, rehabilitation 114, 116 People with Disabilities (1993) 9, 147, 172 Tertiary prevention 8 Standards Thailand accessibility see Accessibility standards communication support 140, 190 defined 170 rehabilitation 110, 113, 117 inadequate 262 risk trends 37 information and communication technology 185, work and employment 245, 247 188–189 Therapy 100–101, 309 Statistical Office of the European Union (EUROSTAT) Threshold for disability 26–27, 29–31, 290–292, 283 293–294 323 World report on disability Togo 110 United Kingdom 39, 43, 107 Toilets 13, 170, 174 assistance and support 140, 142, 147, 149, 151, 153, 154 Tonga 41 deinstitutionalization 148 Trachoma 33 education 211, 220 Trades unions 250, 252 enabling environments 171, 180, 183–184, 185–186, 192 general health care 61, 70, 75, 76, 79, 81 Training (see also Education) personal assistants 144, 145, 155 building capacity for 111, 112 rehabilitation 100, 101, 114 disability 266 risk of premature death 60, 61 health care workers 78–79 work and employment 238, 239, 241, 244, 249, 250 rehabilitation personnel 108, 110–111 school teachers 215, 217, 222–223, 226–227 United National Educational, Scientific and Cultural support service users 155, 158 Organization (UNESCO) 193, 210, 217 support workers 155, 158 United Nations transport managers 183 agencies, recommendations for 268–269 vocational see Vocational rehabilitation and training General Assembly 12 Tram systems 180 United Nations Economic and Social Commission for Transport operators 179 Asia and the Pacific (UNESCAP) 24, 282, 284 education and training 183 United Nations Economic Commission for Europe Transportation (UNECE) 283–284 accessible 170, 178–183, 194–195 United Nations Washington Group on Disability barriers 178–179 Statistics 45, 281–282, 284 defined 170 questions 25, 26–27, 281–282 fare structures 179 United Republic of Tanzania 74, 110, 140, 181 to health care facilities 71–72 United States of America physical barriers 180–181 assistance and support 139–140, 142, 143, 148–149, 152, policies 179 153 to rehabilitation centres 114 causes of disability 33, 59 universal design 181–182 education 210, 212, 213–215, 216, 218–219, 223 Transportation Accessibility Improvement Law, 2000, enabling environments 171, 173, 175 Japan 181 foreign aid 107 Travel chain, continuity in 178–179, 182–183, 194 general health care 61 Turkey 242 addressing barriers 65 21st Century Communications and Video Accessibility affordability 67, 69, 70 Act, United States 187 human resource barriers 79 improving service delivery 72, 73, 76 information and communication technology 185, 187, [U] 188, 189–190, 191 Uganda 75 labour force participation 22, 238 assistance and support 142 life expectancy 60 assistive technologies 101 personal support workers 144, 145 clubfoot treatment 99, 114 rehabilitation 101, 103, 107, 108, 112 community-based rehabilitation 141 transportation problems 170 education 212, 223 work and employment 239, 241, 242, 243–244, 246, enabling environments 171, 176 249–250 Uganda National Association of the Deaf (UNAD) 141 Universal design 264–265 Undue hardship concept 173 assistive devices 118 Unemployment 39, 236 (see also Employment) built environment 177–178 UNESCO, see United National Educational, Scientific defined 170, 309 and Cultural Organization health care equipment 74 UNICEF Multiple Indicator Cluster Surveys (MICS) information and communication technology 191 36–37 school buildings 223 transport systems 181–182 324 Index Universities Wealth, measuring, World Health Survey 292 education of health care workers 78, 79 Web Content Accessibility Guidelines (WCAG) 189 education of rehabilitation personnel 110 Web sites, see Internet schools of architecture 176 Wheelchairs 4, 118, 174 Unmet needs, see Needs and unmet needs Women, see Females Urban areas Work 235–252 (see also Employment; Labour market) disability prevalence 28 accessibility 239 mental health services 71 addressing barriers 240–250 rehabilitation services 114 barriers 239–240 Uruguay 40, 219 concepts 236 User charges 149 importance 236 User involvement (see also Involvement of disabled misconceptions about disability 239–240 people) recommendations 250–252 support services 153–154 tailored interventions 241–245 Workforce Investment Act, 1998, United States [V] 243–244 Vans, shared 179–180 World Federation for the Deaf 211 Videophones 184 World Health Reports 67–69, 71 Viet Nam World Health Survey (WHS) assistive devices 118 analytical methods 288–292, 299 costs of disability 40, 43 compared to Global Burden of Disease 29–31, 292–293 education and training 110, 217, 218 design and implementation 287–294 news broadcasts 190 disability prevalence 25–28, 29–31, 261–262 Violence 59, 216 educational participation 206, 207 Visual impairment employment rates 237 congenital 58 general health care 60, 62–64, 66, 67, 71 disability prevalence by specific causes 297 limitations 293 education of children 214 measuring wealth 292 information and communication technology 172, 184, threshold for disability 26–27, 29–31, 290–292, 293–294 185, 189, 192–193 World Programme of Action Concerning Disabled People rehabilitation 97, 101, 114, 117 (1982) 9 trachoma-related 33, 181 World Psychiatric Association 6 transportation 178 World Health Survey 289 [Y] Vocational Rehabilitation Act, United States 213 Years of health lost due to disability (YLD) 28, 271– Vocational rehabilitation and training 235, 245–246, 276, 295 247, 251, 309 Yemen 149 Voluntary services, support for 151–152 Voting 171 [Z] Vulnerable groups Zambia 40, 103 assistance and support 147 assistance and support 153 disability prevalence 27, 34–37, 262 education 207, 208, 223 measuring disability 23, 25, 26–27 [W] need for services 41, 42 W3C Web Accessibility Initiative 189 work and employment 238 Wages 239 Zanzibar 225 lower 237, 263 Zimbabwe 23, 40, 72 reservation 237, 308 educational participation 207 Waiting times 103, 114 need for services 41, 42 Washington Group, see United Nations Washington rehabilitation 103, 110 Group on Disability Statistics 325