LSMS GUIDEBOOK January 2020 Disability Measurement in Household Surveys A Guidebook for Designing Household Survey Questionnaires Marco Tiberti and Valentina Costa LSMS GUIDEBOOK January 2020 Disability Measurement in Household Surveys A Guidebook for Designing Household Survey Questionnaires Marco Tiberti World Bank Valentina Costa World Bank ABOUT LSMS The Living Standards Measurement Study (LSMS), a survey program housed within the World Bank’s Develop- ment Data Group, provides technical assistance to national statistical offices in the design and implementation of multi-topic household surveys. Since its inception in the early 1980s, the LSMS program has worked with dozens of statistical offices around the world, generating high-quality data, developing innovative technologies and improved survey methodologies, and building technical capacity. The LSMS team also provides technical support across the World Bank in the design and implementation of household surveys and in the measurement and monitoring of poverty. ABOUT THIS SERIES The LSMS Guidebook series offers information on best practices related to survey design and implementation. While the Guidebooks differ in scope, length, and style, they share a common objective: to provide statistical agen- cies, researchers, and practitioners with rigorous yet practical guidance on a range of issues related to designing and fielding high-quality household surveys. The series aims to achieve this goal by drawing on the experience accumu- lated from decades of LSMS survey implementation, the expertise of LSMS staff and other survey experts, and new research using LSMS data and methodological validation studies. Copyright © 2020 The World Bank. Rights and Permissions This work is available under the Creative Commons Attribution 3.0 IGO license (CC BY 3.0 IGO) http://creativecommons.org/licenses/by/3.0/ igo. Under the Creative Commons Attribution license, you are free to copy, distribute, transmit, and adapt this work, including for commercial purposes, under the following condition: Attribution—Please cite the work as follows: Tiberti, M. & Costa, V. (2019). Disability Measurement in Household Surveys: A Guidebook for Designing Household Survey Questionnaires. Washington DC: World Bank. Disclaimer The findings, interpretations, and conclusions expressed in this Guidebook are entirely those of the authors. They do not necessarily represent the views of the International Bank for Reconstruction and Development/World Bank and its affiliated organizations, or those of the Executive Directors of the World Bank or the governments they represent. Living Standards Measurement Study (LSMS) World Bank Development Data Group (DECDG) lsms@worldbank.org www.worldbank.org/lsms data.worldbank.org Cover images: M. Sabury, M. Goto, J. Issac Cover design and layout: Deirdre Launt TABLE OF CONTENTS ABBREVIATIONS AND ACRONYMS.......................................................................................................................... V ACKNOWLEDGEMENTS ........................................................................................................................................... VI GLOSSARY................................................................................................................................................................... VII EXECUTIVE SUMMARY............................................................................................................................................ VIII I BACKGROUND AND DEFINITIONS........................................................................................................................1 1.1. UNDERSTANDING DISABILITY AS HUMAN CONDITION......................................................................................................... 1 1.2. UNDERSTANDING DISABILITY RIGHTS AS A DEVELOPMENT GOAL IN THE SDGS......................................................... 2 2. METHODS FOR DISABILITY MEASUREMENT IN SURVEYS...............................................................................4 2.1. CONCEPTUAL FRAMEWORK................................................................................................................................................................ 4 2.2. SHORT SET OF QUESTIONS................................................................................................................................................................. 5 2.2.1. WASHINGTON GROUP – SHORT SET ON FUNCTIONING (WG-SS)................................................................................................ 5 2.2.2. WHO - WORLD HEALTH SURVEY (WHS-SS) & DISABILITY ASSESSMENT SCHEDULE 2.0 (WHODAS 2.0-SS).... 7 2.2.3. USAID - DEMOGRAPHIC AND HEALTH SURVEYS PROGRAM ON DISABILITIES (DHS-SS)................................................ 8 2.3. EXTENDED SETS OF QUESTIONS....................................................................................................................................................... 8 2.3.1. WASHINGTON GROUP – EXTENDED SET ON FUNCTIONING (WG-ES)..................................................................................... 8 2.3.2. WASHINGTON GROUP – MODULE ON CHILD FUNCTIONING (WG-ES-C).............................................................................. 8 2.3.3. WASHINGTON GROUP – MODULE ON SCHOOL PARTICIPATION (WG-ES-P)........................................................................ 9 2.3.4. WHO - MODEL DISABILITY SURVEY (MD-ES), DISABILITY ASSESSMENT SCHEDULE 2.0 (WHODAS 2.0 - ES) & WORLD HEALTH SURVEY (WHS-ES)................................................................................................................................... 9 3. MEASURING DISABILITY IN HOUSEHOLD SURVEYS AT THE WORLD BANK............................................11 3.1. A DISABILITY MODULE FOR MULTI-TOPIC HOUSEHOLD SURVEYS .................................................................................... 11 3.2. CHALLENGES IN IMPLEMENTING THE DISABILITY MODULE IN MULTI-TOPIC HOUSEHOLD SURVEYS................ 12 3.2.1. SAMPLING DISABILITY .........................................................................................................................................................................................................12 3.2.2. TOPIC IMPLEMENTATION ON MENTAL HEALTH.............................................................................................................................................14 3.2.3. TRAINING TO DISABILITY QUESTIONS.....................................................................................................................................................................14 3.2.4. INCLUDING ENVIRONMENTAL FACTORS IN A DISABILITY MODULE ...........................................................................................15 REFERENCES................................................................................................................................................................16 ANNEX..........................................................................................................................................................................18 LIST OF FIGURES Figure 1: The ICF.................................................................................................................................................................................................................................................4 LIST OF TABLES Table 1. Definitions of disability..................................................................................................................................................................................................................3 Table 2. ICF qualifiers scales for impairments and environmental factors.........................................................................................................................5 Table 3. ICF qualifiers for activity and participation........................................................................................................................................................................5 Table 4. Employment disaggregated by varying disability definitions: adults 18-64 years (WG-SS)................................................................13 ANNEX Table 1A. SDGs that address disability indirectly.......................................................................................................................................................18 ANNEX Table 1B. SDGs that address disability directly...........................................................................................................................................................20 ANNEX Table 2. Comparing disability question sets..................................................................................................................................................................21 ANNEX Table 3. Disability module/questions: comparision between LSMS surveys, DHS-7, and Washington group recommendations................................................................................................................................................................................................24 ABBREVIATIONS AND ACRONYMS ADAPT Able Disabled All People Together (formerly known: The Spastics Society of India) CIDH International classification of impairments, disabilities and handicaps CRPD Convention on the Rights of People with disabilities DFAT Australian Department of Foreign Affairs and Trade DFID Department for International Development (UK) DHS Demographic and Health Surveys DPO Disabled People’s Organization EHIS European Health Interview Survey ICF International Classification of Functioning, Disability and Health ICF-CY International Classification of Functioning, Disability and Health for Children & Youth ICIDH International Classification of Impairments, Disabilities and Handicaps LSMS Living Standards Measurement Study LSMS-ISA Living Standards Measurement Study – Integrated Surveys on Agriculture MDS Model Disability Survey MICS Multiple Indicator Cluster Survey NCHS National Center for Health Statistics NHIS National Health Interview Survey (U.S.) SAGE Study on Global Aging and Adult Health SDGs Sustainable Development Goals UN United Nations UNDP United Nations Development Programme UNECE United Nations Economic Commission for Europe UNESCAP United Nations Economic and Social Commission for Asia and the Pacific UNICEF United Nations International Children’s Emergency Fund UNSD United Nations Statistical Division USAID United States Agency for International Development WG Washington Group on Disability Statistics WG-ES Washington Group Extended Set WG-ES-C Washington Group Extended Set on Child Functioning WG-ES-F Extended Set Functioning WG-ES-P Module on School Participation WG-SS Washington Group Short Set WHO World Health Organization WHODAS 2.0 World Health Organization Disability Assessment Schedule WHO-WHS World Health Organization World Health Survey v ACKNOWLEDGMENTS This work was supported by the World Bank’s Social Development Global Practice.The authors would like to thank Alemayehu Ambel, Gero Carletto, Mitch Loeb, Charlotte Vuyiswa McClain-Nhlapo, Josefine Durazo and Raka Baner- jee for sharing ideas and comments at different stages of the preparation of this guidebook. We are also grateful to the reviewers Kathleen G. Beegle, Jonathan G. Kastelic, Daniel Mont, and Akiko Sagesaka for their useful comments that have significantly contributed to improve the guidebook. vi  GLOSSARY1 Functioning – An umbrella term including 1) body functions and structures (anatomy, physiology, and psychology) and 2) activity and participation (communication, mobility, self-care, etc.).The term denotes aspects of the interaction between an individual with a health condition and that individual’s contextual factors (environmental and personal factors). Participation – A person’s involvement in a life situation (i.e. marriage or family formation, employment, education, use of the transportation system, etc.). The term represents the societal perspective of functioning. Impairment – Problem in body function or structure as a significant deviation or loss. Environment – The external or extrinsic world that forms the context of an individual’s life. Environmental factors make up the physical, social, and attitudinal environment in which people live and conduct their lives. These factors are external to the individual and can have a positive or negative influence on the individual’s performance as a member of society, on the individual’s capacity to execute actions or tasks, or on the individual’s body function or structure. Body functions – The physiological functions of body systems, including psychological functions. “Body” refers to the human organism as a whole, including the brain. Hence, mental (or psychological) functions are subsumed under body functions. The standard for these functions is considered to be the statistical norm for humans. Body structures – The structural or anatomical parts of the body such as organs, limbs, and their components classified according to body systems. The standard for these structures is considered to be the statistical norm for humans. Activity – The execution of a task or action by an individual. The term represents the individual perspective of functioning. 1 Definitions taken from International Classification of Functioning, Disability & Health (WHO, 2001) vii EXECUTIVE SUMMARY An estimated one billion people worldwide live with disabilities. Of the world’s poorest people, one in five live with disabilities, in conditions where they lack material resources as well as opportunities to exercise power, reach their full potential, and flourish in various aspects of life. These numbers are rising particularly quickly in high-income countries, where national populations are growing older at unprecedented rates, leading to a higher incidence of diabetes, cardiovascular diseases, and mental disorders (WHO and World Bank, 2011). People with disabilities were not listed as a priority in the Millennium Development Goals. As a result, they were excluded from many development initiatives, representing a lost opportunity to address the economic, educational, social, and health concerns of millions of the world’s most marginalized citizens (UN, 2011). In contrast, for the 2030 Agenda for Sustainable Development, United Nations member states pledged to leave no one behind, recognizing that development programming must be inclusive of people with disabilities. To ensure disability-inclusive development, disability data must capture the degree to which society is inclusive in all aspects of life: work, school, family, transportation, and civic participation, inter alia. Disaggregating disability in- dicators will allow us to understand the quality of life of people with disabilities, towards developing programs and policies to address existing disparities. At the Global Disability Summit in July 2018, the World Bank announced new commitments on disability inclusion.2 Responding to the urgent need for accelerated action at scale to achieve disability-inclusive development, one of these commitments recognized the importance of data disaggregation. Specifically, the Bank pledged resources to strengthen disability data by scaling up disability data collection and use, guided by global standards and best prac- tices. This commitment is aligned with the World Bank’s October 2015 pledge to support the 78 poorest countries in conducting household surveys every three years. Regular household surveys are an excellent option for disability measurement, as they can be stratified to oversample people who are more likely to experience limited participation in society. In multi-topic household surveys, disability data can be collected along with other socioeconomic data, enabling a richer analysis of the experiences of people with disabilities. Finally, regular household survey programs can measure the change over time and space in key indicators such as the frequency of types of disability, severity of disability, quality of life, opportunities and participation of people with disabilities, and rehabilitation needs. For example, the recently launched 50x30 initiative may offer a good opportunity to collect disaggregated farm- and rural-related indicators by disability status.3 To facilitate the World Bank’s commitment to disability-inclusive development, this guidebook supports the imple- mentation of the Washington Group Short Set (WG-SS) in multi-topic household surveys, towards improving the collection of disaggregated disability data. The first section presents an overview of definitions of disability from the sociopsychological literature in order to explore how disability is defined and who is considered disabled.The World Bank Group endorses the World Health Organization (WHO) definition of disability as a human and environmental condition, indicating that surveys should capture data on body functions as well as participation restrictions due to contextual conditions (WHO, 2001). The second section looks at three different methods for disability measurement in multi-topic household surveys: the Washington Group (WG) question sets, the World Health Organization (WHO) survey instruments for disabilities, and the Demographic and Health Surveys (DHS) module on disabilities. The final section presents the Functioning 2 For further information on WB commitments on disability-inclusive development, please see: http://www.worldbank.org/en/topic/socialdevelopment/ brief/world-bank-group-commitments-on-disability-inclusion-development 3 The 50x30 initiative was launched at the Data to End Hunger side event during the United Nations General Assembly in October 2018. The initiative brings together a coalition of several multilateral agencies with public and private donors, with the aim of conducting regular surveys of farming households in 50 low and lower-middle income countries by 2030. viii  Disability Module that comprises the six core WG-SS functional domains (seeing, hearing, walking, cognition, self- care, and communication), to be administered to household members above five years of age (proxy respondents are allowed).These questions avoid the use of terms such as disabilities, handicaps, and suffering, which have negative connotations and may result in the underreporting of conditions (Mont, 2007). The response options – ‘No, no diffi- culty’, ‘Yes, some difficulty’, ‘Yes, a lot of difficulty’, or ‘Cannot do it at all’ – are read aloud after each of the six questions. Including the WG-SS in multi-topic household surveys allows for comparing participation levels in education, em- ployment, family, and civic life for people with and without disabilities, thus assisting in assessing equitable access to opportunities. However, several problems remain with collecting disability data in multi-topic household surveys. For example, the low prevalence rate of disability in a random sample can result in inadequate sample size for estimate precision, especially when a stratified sampling strategy is not applied, leading to large standard errors. A stratum specific to disability ensures sufficient sample size for meaningfully precise estimates. However, targeting individuals with disabilities ex-ante cannot be done in multi-topic household surveys that base the selection of primary sampling units on census enumeration frames that contain little to no information on the attributes of the population therein. For example, only 0.92 percent of the population surveyed in the 2010 Living Standards Measurement Study survey in Malawi indicated having at least one serious disability. Small samples can compromise analytical research, limiting the possibility of disaggregating indicators by disability status. The WG-SS questions are not without limitations. For one, they do not capture the general population under 5 years of age, nor the environmental factors that hinder the participation of people with disabilities in daily life events. In general, data on children with disabilities are better collected by using the WG Child Functioning Module (Loeb et al, 2018; Cappa et al, 2018). Additionally, the WG-SS questions do not capture mental health problems. Major con- straints remain on including mental health questions in multi-topic household surveys. In many places, especially low- and middle-income countries with low literacy rates and low indices of mental health support and advocacy, asking someone how often they experience “depression” or “anxiety” would require qualified personnel and additional methodological work on questionnaire design. Mental health and psychosocial functioning questions on anxiety and depression are in their early stages of development and need further cognitive and field testing. ix 1. Background and Definitions 1.1 UNDERSTANDING DISABILITY AS The ICIDH was thus replaced by the International Classi- fication of Functioning, Disability and Health (ICF), and dis- HUMAN CONDITION ability was not only classified as a negative aspect of body Disability is part of the human condition. Most people will functions and structures, but for the first time also referred temporarily or permanently experience difficulties in func- to activity limitations and participation restrictions (WHO, tioning at various points of life, often increasing with age. Re- 2001). According to the ICF’s classification, body functions gardless of its diffusion, defining disability is not an easy task include mental functions; sensory function and pain; voice and for project leaders and data analysts. Disability is an evolving speech functions; functions of the cardiovascular, hematolog- concept and has historically been predicated on various mod- ical, immunological, and respiratory systems; functions of the els.The now outdated Medical Model initially defined disability digestive, metabolic, and endocrine systems; genitourinary as an “impairment” directly caused by a physical disease or an and reproductive functions; neuromusculoskeletal and move- injury that interacts with structures of the body and requires ment-related functions; and functions of the skin and related prevention interventions or medical care in the form of treat- structures. These functions are enabled by a complex set of ment and rehabilitation (see Table 1). The International Clas- bones, muscles, organs, limbs, and other anatomical parts that sification of Impairments, Disabilities and Handicaps (ICIDH) compose the body structure. Functions and structures of the (WHO, 1980) developed disability definitions accordingly. body reveal the quality of the individual’s health condition, Aside from functions and structures of the body, however, allow the execution of tasks or actions by an individual and the Medical Model was not able to capture the environmental affect their involvement in life situations such as learning and factors that may create disability by imposing barriers that applying knowledge, communication and interpersonal social discourage the participation and inclusion of people with dis- interactions, mobility, and self-care. abilities. The increasing importance of environmental factors For instance, people who suffer from vitiligo have patchy in understanding disabilities led to the development of a new areas of depigmented skin. These patches are initially small, Bio-social Model, which identified disability as a social con- but often grow and change color over time. Vitiligo becomes struct that interacts with social perceptions and norms (see a major impairment when the loss of skin pigmentation is Table 1). According to this model, people with disabilities do noticeable, for instance around the eyes, mouth, and hands. not suffer from their health condition as long as environmen- Vitiligo does not cause any activity limitation and is a non-con- tal impediments do not exist (WHO and World Bank, 2011). tagious autoimmune disease. However, people who have vitili- Social inequalities by disability are also compared to those go may be stigmatized for their condition and isolated due to encountered by other minorities based on race, ethnicity, or the unfounded fear of contagion. Thus, they may experience sex, such as “extraordinary high rates of unemployment, pov- social participation restrictions and depression (WHO, 2001). erty and welfare dependency, school segregation, inadequate In contrast, in the case of spinal cord injuries, people experi- housing and transportation, and exclusion from many public ence limitations in body functioning, including partial or com- facilities” (Hahn, 2002). Societal oppression and discrimina- plete paralysis, which may effectively limit working activities if tion are at the heart of this model, with the environment buildings lack physical features such as ramps and elevators. being the “focal point of action” for a policy agenda on disabil- Similarly, the lack of accessible information and communica- ity (Oliver, 1990; Oliver, 1996). tion infrastructure in workplaces, such as clear signage and computers equipped with software, can prevent blind people from being employed. 1  BACKGROUND AND DEFINITIONS  2 The ICF suggests that technology development, natural direct and indirect costs resulting from disability4 and are thus environment, social support and relationships, and services more likely to experience poverty and deprivation (Mitra et and policies are the prominent environmental factors in the al., 2017). perception of one’s disability (Maart et al., 2007). Legislation, On the other hand, poverty may increase disability risk, policy recommendations, capacity building, and technical due to a lack of access to appropriate health and rehabilita- developments that improve health conditions and prevent tion services. According to the World Report on Disability, impairments all play a key role in improving the overall quality approximately one billion people worldwide and one in five of life for people with disabilities. of the world’s poorest people have disabilities (WHO and Moreover, the ICF recognizes personal characteristics, World Bank, 2011). Some recent research in low- and mid- such as motivation and self-esteem, sex, age, lifestyle, social dle-income countries has consistently found that disability is background, education, profession, past and current experi- associated with a higher likelihood of experiencing simulta- ence, and character as factors that influence how disability is neous multiple deprivations (Hanass-Hancock and McKensie, experienced by the individual. For instance, in an environment 2017; Mitra et al., 2013; Trani and Cunning, 2013; Trani et al., where women are limited in their freedom outside their 2015, 2016). Poverty is not exclusively determined by lacking homes, equipping a woman with a wheelchair will not improve material resources but is also a proxy of people’s ability to her mobility. The household environment also matters: some exercise their agency, reach their full human potential, and people with disabilities face discrimination within the house- flourish in society. It is therefore essential to address disabil- hold, such as not being given an equal share of household ity in all programming rather than as a stand-alone themat- resources, while others have very supportive families that can ic issue; in short, addressing disability issues must be main- help them overcome barriers. streamed into all operations. Finally, the recent Human Development Model (Mitra, In 2006, the United Nations adopted the Convention on 2018) defines disability as a deprivation of “functioning” and/ the Rights of People with Disabilities (CRPD), making it the or “capability” and/or “agency” in response to the immediate first comprehensive human rights treaty of the 21st century. environment (family, home, and workplace), the meso-environ- The CRPD provides a framework with which to understand ment (the community), and the macro-environment (regional, disability, by noting that people with disabilities are those who national, and global) (see Table 1). Forced, oppressed, or pas- have long-term physical, mental, intellectual, or sensory impair- sive people, with difficulties in reaching their own “function- ments which in interactions with various barriers may hinder their ings” (or personal achievements) and in realizing their own full and effective participation in society on an equal basis with oth- “capabilities” (or practical opportunities) may have low levels ers (UNDP, 2006).This definition of disability, besides entailing of well-being despite having perfectly functional bodies (Sen, a broad spectrum of impairments, emphasizes the function- 1999). Health deprivation is a necessary but insufficient ingre- al, environmental and participatory aspects of disability dis- dient for disability in the Human Development Model. cussed above.The CRPD establishes a new approach towards people with disabilities. Rather than considering them to be 1.2 UNDERSTANDING DISABILITY “objects” of charity, medical treatment, and social protection, RIGHTS AS A DEVELOPMENT GOAL the CPRD considers people with disabilities as “subjects” Disability rights is a socioeconomic and human goal, with a with rights, capable of claiming those rights irrespective of bi-directional link to poverty. On one hand, disability may af- their disability. This enables them to be active members of fect socioeconomic conditions, worsening wellbeing for indi- society, making decisions for their lives based on their free viduals and households. Not only are children with disabilities and informed consent (see Table 1 below). Furthermore, the less likely to attend school, but adults with disabilities are CRPD illustrates how various human rights apply to people less likely to be employed. When employed, they are often with disabilities and identifies areas where adaptations must either forced to work in low-paid, low-level positions with be made to enable everyone to exercise their rights. Article poor prospects for career development compared to their 3 lists the General Principles while Article 5 (Equality and peers without disabilities, or are self-employed, facing insta- Non-discrimination) address participation and access to edu- bility and lack of social protection (ESCAP, 2015). Moreover, 4 Direct costs include health services, medications, help with daily activities, households with members with disabilities may have extra and disability-specific aid that the family needs to provide to the family member with disabilities, while indirect costs include foregone economic activities. 3  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS cation, employment, family and civic life – in other words, the to education, growth and employment, inequality, the acces- equalization of opportunities. Article 31 on statistics and data sibility of human settlements, and general data collection collection is particularly relevant to the collection of data and monitoring of the SDGs. Table 1A and Table 1B in Annex for the abovementioned policy purposes, and will facilitate the shows the indicators that directly and indirectly address dis- monitoring of participation in cultural life, leisure, and recreation ability for each goal. (Article 30), as well as work and employment (Article 27). To leave no one behind, development must be inclusive; if After years of intense intergovernmental negotiations, not, the gap in outcomes between people with and without United Nations Member States adopted the 2030 Agenda in disabilities will increase. Collecting data on people with dis- 2015, which includes 17 goals and 169 targets for sustainable abilities and the barriers they face is crucial to monitor this development. The 2030 Agenda makes 11 explicit referenc- requisite inclusivity. The next section presents key methods es to people with disabilities and includes disaggregation of for disability measurement in household surveys. data by disability as a core principle, particularly with regards Table 1. Definitions of disability Model Definition Framework Disability is a “impairment” directly caused by a physical International Classification of disease or an injury that interacts with structures of the body Medical Model Impairments, Disabilities and Handicaps and requires prevention interventions or medical care in the (WHO, 1980) form of treatment and rehabilitation. Disability is a human and environmental condition due to International Classification of Function- Bio-social Model negative aspects of body functions and on participation ing, Disability and Health (WHO, 2001) restrictions due to contextual conditions. Disability is a deprivation of “functioning” and/or “capability” Human Development Model and/or “agency” in response to the immediate environment, the Capability Approach (Sen, 1999) meso-environment and the macro-environment. Disability is a socioeconomic and human right goal linked to Convention on the Rights of People Human Right Approach poverty bidirectionally. with disabilities (UNDP, 2006) 2. Methods for Disability Measurement in Surveys 2.1. CONCEPTUAL FRAMEWORK Figure 1. The ICF In line with the World Bank endorsement to acceler- Health condition ate global action for disability-inclusive development in (disorder or disease) key areas such as education, digital development, data collection, gender, post-disaster reconstruction, trans- port, private sector investments, and social protection,5 Body Functions Activity Participation this section informs project leaders about key advancements & Structure made by the international community in measuring disability. The ICF framework is the first and most commonly used international standard framework that conceptualizes the Environmental Personal interconnections between diseases/disability and the environ- Factors Factors ment.The ICF highlights the bi-directional link between health Contextual factors conditions and environmental and personal factors (such as lack of social support, the existence of social barriers, sex, and Source: WHO, 2001 age), as well as the bi-directional impact of stress and social relationships (see Figure 1). ment-related functions; and functions of the skin and related Disability, thus, is not the same as an impairment (recall our structures. Body impairments are coded by the appropriate previous example of vitiligo). People have disabilities if their category of impairment and two qualifiers: the severity of the physical, institutional, and cultural environment lacks assistive problem on a 0-4 scale, and the nature of the change on a 0-7 devices or support networks, and not simply if they, for exam- scale (see Table 2). ple, have problems moving their legs.6 The second section, on environmental factors, captures The ICF framework provides a platform of common lan- products and technology; natural environment and human guage that can be used by different surveys. The first section, changes to environment; support and relationships; attitudes; on impairments of body functions, captures the extent and the and services, systems, and policies. As with impairments of nature of mental functions; sensory function and pain; voice body functions, environmental factors are coded by appropri- and speech functions; functions of the cardiovascular, hema- ate category and the same two qualifiers: extent and nature tological, immunological, and respiratory systems; functions of of the change. Additionally, environmental factors may have the digestive, metabolic, and endocrine systems; genitourinary either negative or positive natures (barriers or facilitations, and reproductive functions; neuromusculoskeletal and move- respectively). To quantify the impact of environmental factors on individual functioning, the ICF offers two more options: 5 The announcement of the ten commitments took place at the Global measuring either the amount of change wrought by the envi- Disability Summit in July 2018 in London. The event was co-hosted by the United Kingdom Department for International Development (DfID) in partnership with ronmental factor on the functioning of the individual, or the the Government of Kenya and the International Disability Alliance. difference between performance and capacity observed for 6 Further information on ICF are available on http://wtww. washingtongroup-disability.com/washington-group-blog/ the categories on which the specific environmental factor is washington-group-questions-consistent-social-model-disability/ acting (see Table 2). 4 5  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS Table 2. ICF qualifiers scales for impairments and Table 3. ICF qualifiers for activity and participation environmental factors ICF codes for activity and participation denote the ICF codes for impairments and environmental performance and the capacity of the individual in factors use the same qualifiers to denote the extent executing certain activities. (or severity) of the problem and the nature of the change. Code Performance/Capacity Cut-offs Additionally, environmental factors may have either 0 NO difficulty 0-4% negative (-) or positive (+) natures (barriers or facilitations, 1 MILD difficulty 5-24% respectively). 2 MODERATE difficulty 25-49% Code Extent of the problem Cut-offs 3 SEVERE difficulty 50-95% 0 NO problem 0-4% 4 COMPLETE difficulty 96-100% 1 MILD problem 5-24% 8 not specified 2 MODERATE problem 25-49% 9 not applicable 3 SEVERE problem 50-95% Source: WHO, 2001 4 COMPLETE problem 96-100% Finally, personal factors may convey important information 8 not specified for a complete description of an individual’s functioning pro- 9 not applicable file. For instance, despite having the needed capacity, a person may not be employed due to a lack of expertise matching job Code Nature of the change market requirements. For this reason, the final section of the 0 NO change ICF framework is not coded, but instead contains open boxes 1 TOTAL absence for including personal factors. 2 PARTIAL absence In line with the ICF’s framework, the Washington Group (WG), the World Health Organization (WHO), and the Unit- 3 ADDITIONAL part ed States Agency for International Development (USAID) 4 ABERRANT dimensions have developed short and long question sets, which are 5 DISCONTINUITY examined in the next section. 6 DEVIATING position 2.2. THE SHORT SETS OF QUESTIONS 7 QUALITATIVE change 2.2.1. WASHINGTON GROUP - SHORT 8 not specified SET ON FUNCTIONING (WG-SS) 9 not applicable The WG was formed in 2001 to address the urgent need for Source: WHO, 2001 high quality, comparable disability statistics. It promotes inter- national cooperation in the area of health statistics, based on The third section, on activity limitations & participation restric- disability measures suitable for censuses or national surveys tion, captures learning and applying knowledge; general tasks and including voices from developing countries. Over several and demands; communication; mobility; self-care; domes- years, the WG developed and tested its Short Set of Ques- tic life; interpersonal interactions and relationships; major tions (WG-SS), which were endorsed by the Inter-Agency life areas such as education, economic self-sufficient, remu- Expert Group on the Sustainable Development Goals in 2017. nerative employment, and basic economic transactions; and The WG-SS targets individual functioning at the activity level communication and social/civic life. Each category is coded and is intended to provide a fast, low-cost way to collect data by performance and by capacity, each using a 0-4 scale. The that allows for disaggregation by disability status. The WG-SS performance qualifier captures the extent of participation can be used in censuses, sample-based national surveys (such as restriction by describing an individual’s actual performance of multi-topic household surveys), or other data collection formats. an action in their current environment (or “involvement in a life situation”). Meanwhile, the capacity qualifier indicates the At the Global Disability Summit in July 2018, the World extent of activity limitation by describing an individual’s ability Bank endorsed the WG-SS as the global standard and best to execute an action in a standard environment (see Table 3). practice for scaling up disability data collection and use.These METHODS FOR DISABILITY MEASUREMENT IN SURVEYS  6 questions have already been implemented in several surveys ty” in doing certain actions, whereas response dichotomies (such supported by the World Bank. For example, they have been as “yes” or “no”) tend to force respondents into a category with included in the following Living Standards Measurement Study which they may not want to identify; thus, given only a yes/no – Integrated Surveys on Agriculture (LSMS-ISA) surveys: Ethi- option, they may prefer to choose “no” (Mont, 2007). opia 2011/12, 2013/14, and 2015/16; Malawi 2011/12; Nigeria Q2: Do you have difficulty hearing, even if using a 2010/11, 2012/13, and 2015/16 (only seeing question); Tanza- hearing aid? nia 2010/11 and 2014/15; and Uganda 2009/10 and 2010/11. The purpose of this question is to identify people who have The World Bank has already incorporated the full set of limitations or issues with their hearing even when using a WG-SS into the Living Conditions Household Surveys of 23 hearing aid (if they wear a hearing aid). Hearing refers to peo- countries7 and some of the WG-SS questions into the 8 Latin ple using their ears and auditory capacity to perceive or ob- American Countries (LAC).8 serve what is happening around them. Even if using a hearing The WG-SS includes questions about an individual’s difficul- aid refers to difficulty of the respondent in hearing with a ties in executing basic activities in six core functional domains. hearing aid – NOT how hearing would be if hearing aids, or It is intended for a general population of 5 years of age and better hearing aids, were provided to one who needed them. above (see Table 2 in Annex). The full set of questions should All problems with hearing considered a disability by the re- be always administered in the order presented below, with spondent should be captured. the introductory sentence: “The next questions ask about Q3: Do you have difficulty walking or climbing steps? difficulties you may have doing certain activities because of a The purpose of this question is to identify people who have health problem”. limitations or problems of any kind getting around on foot. Q1: Do you have difficulty seeing, even if wearing The capacity to walk (i.e. the use of legs) should be without glasses? the assistance of any device (wheelchair, crutches, walker, etc.) The purpose of this question is to identify people who have or human support. Any difficulty with walking that is consid- vision disability or problems seeing even when wearing glass- ered a problem by the respondent should be captured. Diffi- es (if they wear glasses). Seeing refers to people using their culties walking can include those resulting from impairments eyes and visual capacity to perceive or observe what is hap- in balance, endurance, or other non-musculoskeletal systems, pening around them. Even if wearing glasses refers to difficulty for example, blind people having difficulty walking in an un- of the respondent in seeing with glasses if the respondent familiar place or deaf people having difficulty climbing stairs has and uses them – NOT how vision would be if glasses, when there is no lighting. or better glasses, were provided to one who needed them. Q4: Do you have difficulty remembering or Any difficulty with vision that is considered a problem by the concentrating? respondent should be captured. The purpose of this question is to identify people who have Each question has four response categories, which are read issues with remembering or focusing attention that may immediately after each question and capture the full spectrum obstruct their daily activities. Remembering should not be of functioning from mild to moderate to severe: equated with memorizing or having a good or bad memory. With younger people, remembering is often associated with 1. No, no difficulty recalling facts learned in school. Concentrating refers to the 2. Yes, some difficulty (mild) focus needed to complete a particular task. It is the mental 3. Yes, a lot of difficulty (moderate) ability to accomplish tasks such as reading, calculating num- bers, and learning something new. All problems with remem- 4. Cannot do it at all (severe) bering, concentrating, or understanding the surrounding en- Scaled responses are preferred because they improve the vironment that are considered a problem by the respondent respondents’ ability to report their own perception of “difficul- should be captured. Note that difficulties in remembering or concentrating due to high workload, stress, or substance 7 Afghanistan, Bangladesh, Bhutan, Eswatini, Gabon, Liberia, Malawi, Namibia, Nigeria, Senegal, South Africa, Tanzania, Uganda, Zimbabwe, Djibouti, Tunisia, abuse are excluded. West Bank and Gaza, Yemen, Lebanon, Cambodia, Bolivia, Chile, and Mexico 8 Costa Rica, Grenada, Guyana, Peru, St. Kitts and Nevis, St. Lucia, St. Vincent and the Grenadines, and Trinidad and Tobago 7  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS Q5: Do you have difficulty with self-care such as then, it has undergone considerable revisions, leading in 2010 washing all over or dressing? to the WHODAS 2.0, intended to be a single generic instru- The purpose of this question is to identify people who have ment for assessing health status and disability. The 12-item problems with taking care of themselves independently. version (WHODAS 2.0-SS) is based on the WG-SS domains, “Washing all over” refers to the ability of a person to clean with the same categorical response options and taking five their own body in a culturally appropriate manner. “Dress- minutes on average to be administered. However, there are ing” refers to all aspects of putting on clothing, including the some key differences with the WG-SS. First of all, the vision actions of gathering clothing from storage areas (i.e. closet, and hearing domains are not included, while additional ques- dressers), securing buttons, tying knots, zipping, and so on. tions are included for other domains: mobility (standing for Washing and dressing represent tasks that occur on a daily long periods such as 30 minutes; walking a long distance, such basis and are considered basic, universal activities. as a kilometer), cognition (concentrating on doing something for 10 minutes; learning a new task, for example, learning how Q6: Using your usual language, do you have to get to a new place), self-care (washing your whole body; difficulty communicating such as understanding getting dressed), and social interaction (joining in community or being understood by others? activities such as festivities, religious or other activities, in the The purpose of this question is to identify people who have same way as anyone else can; emotionally affected by your problems with talking or listening that impede comprehen- health problems; dealing with people you do not know; main- sion when using the same language. Communication diffi- taining a friendship). Secondly, the WHODAS 2.0-SS includes culties can involve mechanical problems such as hearing or questions on labor impact (taking care of your household speech impairments as well as the inability of the mind to responsibilities; impact day-to-day work/school). Another key interpret sounds reported by the auditory system, recognize difference with the WG-SS is related to the reference period. words, or compose/speak a sentence even when the person The WHODAS 2.0-SS uses the last 30 days for its reference knows the words. Note that difficulties in understanding or period, while the WG-SS does not refer to time and the re- being understood when using a non-native or unfamiliar lan- sponse categories go from 0 (none) to 5 (extreme) (see Table guage are not included. 2 in Annex). Finally, the WG-SS questions do not address duration. In 2002-2004 the WHO implemented the World Health Based on test results, most of the respondents tend to Survey (WHS) to strengthen national capacity to monitor report difficulties they have in their usual state. For instance, the responsiveness of health systems and critical health out- an individual with a broken leg who temporarily has difficulty comes (such as disability, HIV, and domestic violence) by using with walking will answer “no difficulty”, because they usually comparable household and individual survey instruments.The do not have any difficulty. However, it may be possible that current version includes household data on health insurance respondents also report temporary difficulties, but the WG coverage, health expenditures, and indicators of permanent does not consider this to be a problem for estimating disabil- income or wealth, as well as individual-level data on sociode- ity prevalence rate.9 mographic information, health state descriptions, health state 2.2.2.WHO - WORLD HEALTH SURVEY valuations, risk factors, chronic conditions, mortality, health care, responsiveness of health systems, and social capital. (WHS-SS) AND THE DISABILITY The WHS addresses disability in its Module on Health State ASSESSMENT SCHEDULE 2.0 (WHODAS Descriptions, which includes questions on seeing, moving, 2.0-SS) concentrating, self-caring, and social interaction, but not on The first version of the WHO Disability Assessment Sched- communication and hearing domains. Differently from the ule (WHODAS) was published in 1999 as an instrument for WG-SS, the module includes additional questions for vision assessing body functioning, mainly for people with psychiatric (‘Do you (does NAME) wear glasses? (Yes/No)’ and If Yes, ‘in the disorders. It was implemented between 2002 and 2004 in 70 past 30 days how much difficulty did you have in recognizing a per- countries selected to represent all regions of the world. Since son, you know across the road?’) and social interaction domains (‘In the past 30 days how much difficulty did you have in (i) … 9 See http://www.washingtongroup-disability.com/wp-content/ personal relationship or participate in the community?; (ii)…feel- uploads/2016/12/WG-Document-2-The-Washington-Group-Short-Set-on- ing sad or depressed?; (iii) …dealing with conflicts and tensions? Functioning.pdf for an explanation of the costs of identifying those with only long- term difficulties. (iv)…feeling worried or anxious?). Moreover, unlike the WG-SS, METHODS FOR DISABILITY MEASUREMENT IN SURVEYS  8 the module uses the last 30 days for its reference period the Unlike the WG-SS, the extended version also includes response categories go from 0 (none) to 5 (extreme) (see questions on mental health, such as anxiety (frequency of Table 2 in Annex). feeling worried, nervous or anxious; if any medication is taken for these feelings; degree/intensity of these feelings the last 2.2.3. DEMOGRAPHIC AND HEALTH time they were experienced), depression (frequency of feel- SURVEYS PROGRAM ON DISABILITIES ing depressed, if any medication is taken for depression, and (DHS-SS) - USAID degree/intensity of depression), pain (frequency and degree/ Since 1984, the DHS has provided technical assistance to intensity of the pain), upper-body (difficulty in raising a 2-liter more than 300 surveys in over 90 countries worldwide bottle of water or soda from waist to eye level and difficulty on several topics, especially related to health (such as HIV in using own hands and fingers for picking up small objects), knowledge and prevention, malaria, female genital cutting, and and fatigue (frequency, degree/intensity and duration of feel- so on). It has also addressed education, domestic violence, ing tired and exhausted) (detailed questions are reported in nutrition, and tobacco use (Corsi et al. 2012). In 2017, the the Annex).10 DHS Program (DHS-7) released a new optional Disability Adding these domains increases the number of people with Module, based on the WG-SS, which collects disability data disabilities that can be identified, at the cost and administra- on a 1-4 scale for all people in the household five years of tion time of additional questions. For instance, in the US, the age and older, across six core functional domains. Unlike the WG-SS yields a 9.5 percent disability prevalence rate, which WG-SS, vision and hearing sections include an initial Yes/No increases to 11.9 percent when adding Anxiety, Depression, question on whether the person suffers from the problem and Upper-Body questions.11 (‘Does (NAME) wear glasses or contact lenses to help them see?’ or ‘Does (NAME) wear a hearing aid?’), followed by another 2.3.2. WASHINGTON GROUP – MODULE question on the difficulty of the action (‘[If YES] I would like to ON CHILD FUNCTIONING (WG-ES-C) know if (NAME) has difficulty seeing even when wearing glasses To complement the WG-ES-F, in 2009 the WG began develop- or contact lenses’; ‘[If YES] I would like to know if (NAME) has dif- ing a Module on Child Functioning, coinciding with UNICEF’s ficulty hearing even when wearing a hearing aid’). Moreover, the plans to revise the data collection module used in its Multiple question on hearing is not administered in countries where Indicator Cluster Survey (MICS) program.12 The UN Conven- hearing aids are not common. The DHS Disability Module tion on the Rights of People with Disabilities requires member is being implemented and tested in several countries and states to collect appropriate information on children with has been endorsed by the United Nations for use in popu- disabilities, including statistical and research data, to formu- lation-based data collection activities (see Table 2 in Annex). late and implement policies that give effect to the UN Con- vention (Article 31). Disability is different for children and 2.3.THE EXTENDED SET OF QUESTIONS adults: adults face difficulties in mobility, sensory, and personal 2.3.1. WASHINGTON GROUP - EXTEND- care, especially with advancing years, while children experi- ence disabilities related to intellectual functioning, affect, and ED SET FUNCTIONING (WG-ES-F) behavior. While the WG-SS can be used for children over five The WG developed an Extended Set of Functioning Questions years old, disability prevalence for children under five years (WG-ES-F) to be used in a disability module in a household of age must be addressed by using a specific module to avoid survey or in a dedicated disability survey (see Table 2 in An- undercounting. nex). The set of questions comprises the six WG-SS core functional domains, with six additional questions on vision (‘Do you (does NAME) wear glasses?’), on hearing (‘Do you use a hearing aid?’) and mobility (‘Do you have difficulty moving around inside your home?’; ‘Do you have difficulty going outside of your home?’; ‘Do you have difficulty walking a long distance such as a kilometer or equivalent?’; ‘Do you have difficulty in using your hands and fingers, such as for picking up small objects or opening 10 http://www.washingtongroup-disability.com/wp-content/uploads/2016/01/ WG_Extended_Question_Set_on_Functioning.pdf and closing containers?’).The extended set questions for cogni- 11 http://www.washingtongroup-disability.com/washington-group-blog/ tion, self-care, and communication are as short as the WG-SS identify-pwd/ 12 The Multiple Indicator Cluster Survey (MICS) program is available online at questions and have the same response categories. https://mics.unicef.org/ 9  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS The WG-ES-C module aims to identify the subpopulation environment, by obtaining parental or teachers’ responses to of children who are at greater risk of disability relative to oth- questions across the three domains. er children of the same age, or who are experiencing limited The first domain is intended for the general adult popula- participation in an unaccommodating environment. In particu- tion, with the purpose of capturing attitudes towards edu- lar, the module considers two age groups – 2-4 years and 5-17 cation for all children, and specifically for children with dis- years – and captures the level of functioning in the following abilities. The second section is meant to be administered to domains of life: Speech and Language, Hearing,Vision, Learning teachers or caregivers of children who are attending school. It (cognition and intellectual development), Mobility and Motor includes questions that evaluate the accessibility of the phys- skills, and Emotions and Behaviors. Categorical responses are ical space, the curriculum, and other aspects of the school on a 0-4 scale of functional difficulty, as the one used in the environment such as teachers’ attendance, availability of WG-SS. To standardize the child’s functioning in relation to toilet facilities, and access to social activities. The final com- the child’s age, the questions should begin with “Compared ponent focuses on out-of-school children and attempts to with children of the same age…”, where appropriate. gain a deeper understanding of the environmental barriers to After an extensive review by experts and several tests in school participation, including safety, transportation, accessi- different countries in order to ensure the quality of questions bility of the curriculum, and affordability. and the cultural understanding by respondents, a 2017 joint The module has already completed several rounds of statement issued by multiple UN agencies, member states, revision and cognitive testing in India, the US, and Mongolia. organizations of people with disabilities, and other stakehold- UNICEF and WG suggest the use of “at least a lot of difficulty ers recommended this module as the appropriate tool for or not able at all in one domain” as the cut-off for the disag- SDG data disaggregation for children, with the cut-off for dis- gregation of outcome indicators (such as school attendance) ability at level 3 (“a lot of difficulty”). by disability status. However, for education systems, the 2.3.3. WASHINGTON GROUP – MODULE WG also suggests the use of the cut-off “some difficulty” with accompanying clinical assessment to capture children who ON SCHOOL PARTICIPATION (WG-ES-P) require services and learning support. UNICEF and the WG also promote reliable and cross-coun- try comparable data collection to support the right to educa- 2.3.4. WHO MODULES: MODEL tion for children with disabilities, in line with Article 28 of the DISABILITY SURVEY (MD-ES), DISABILITY Convention on the Rights of the Child (UNICEF, 1989), Arti- cle 24 of the Convention on the Rights of People with Dis- ASSESSMENT SCHEDULE 2.0 (WHODAS abilities, and Goal 4 of the SDGs. Children with disabilities are 2.0 - ES) & WORLD HEALTH SURVEY usually less likely to ever go to school and more likely to drop (WHS-ES) out before completing a full course of education. Disability The Model Disability Survey (MDS), developed by the WHO can thus be a significant factor of exclusion from education, and the World Bank in 2017, is a stand-alone data collection putting children at higher risk of negative social and economic instrument to provide in-depth information for disabled pop- outcomes, and preventing their full participation in society. ulations at regional or national levels, and to monitor the For this reason, UNICEF and the WG have developed the United Nations Convention on the Rights of People with Module on Inclusive Education (WG ES-P), which addresses Disabilities. Designed to be implemented every 5-10 years, three main domains related to potential environmental barri- the full MDS has 294 questions and takes approximately two ers to education: attitudes, accessibility, and affordability. This hours to administer. set of questions collects information that can inform policy, Data on disability are collected in the Health Conditions provides a statistical summary of environmental influences on Module.13 The Health Conditions Module collects information participation in school, and identifies key areas with bottle- on current health conditions or diseases to determine the necks to address. The module can be added to other sur- number of individuals who have health problems and of those, veys and can be used across a variety of school contexts. The how many receive treatment. An additional fifteen questions questions focus on education through a formal mechanism 13 The full set of questions included in the MDS can be browsed at http://www. (as opposed to home school or tutoring) and are designed who.int/disabilities/data/model-disability-survey4.pdf?ua=1. The Environmental to capture the interactions between the participant and the Factors Module will be discussed in paragraph 3.4. METHODS FOR DISABILITY MEASUREMENT IN SURVEYS  10 cover difficulties with hand and arm use, bodily aches or pains, participating in society, and making friends). The average time sleep and energy, breathing, affect, interpersonal relationships, to administer this questionnaire is 20 minutes. This extended handling stress, household tasks, community and citizen- version has been already administered by the United Nations ship participation, caring for others, and work and school- Economic and Social Commission for Asia and the Pacific in ing. For instance, the mobility domain includes the following five countries.17 questions: – a. “How much difficulty do you have moving around In addition, the WHO provides a hybrid WHODAS2.0 ver- because of your health?”; b. “Because of your health, how much sion that begins with the short-set of 12 questions (WHO- difficulty do you have doing things that require the use of your DAS2.0-SS, explained in section 2.2), which are used to hands and fingers, such as picking up small objects or opening a screen for domains of functioning. On the basis of positive container?”; c. “How much difficulty do you have with shortness of responses to these, up to 24 additional questions can be breath because of your health?”; d. “How much difficulty do you asked. This version can be only administrated by interview or have doing household tasks because of your health?”; e. “Because computer-adaptive testing (CAT). 18 of your health, how much difficulty do you have coping with all the things you have to do?”; f. “How many bodily aches or pains do you Finally, the WHO has also developed an extended version have?” (detailed questions of the other domains are report- of the Module on Health State Descriptions (WHS-ES) that ed in the Annex, Table 2). The response categories capture defines ‘The module includes questions on Overall health the full spectrum of functioning from mild to severe (1=No, (mental and physical health); Mobility (moving and getting no difficulty; 2=Yes, some difficulty; 3=Yes, a lot of difficulty; around); Self-care (attending to one’s hygiene, dressing, eating, 4=Cannot do it at all) (see Table 2 in Annex). and staying alone); Pain and Discomfort (feeling body pains or aches); Cognition (concentrating and remembering things); Additionally, the WHO has also developed the ‘Brief Ver- Interpersonal Activities (joining in community activities, par- sion’ that includes only fundamental MDS modules necessary ticipating in society);Vision (seeing people from far); Sleep and to describe disability, such as module 3000 (environmental Energy (not feeling rested and refreshed); and Affect (feeling factors), module 4000 (functioning), module 5000 (capacity sad or depressed) (see Table 2 in Annex). Questions on Hear- and health conditions), and a reduced number of questions ing and Communication domains are not included, and the (38 questions).14 With ‘only’ 38 questions, the Brief MDS ver- module refers to the last 30 days reference period. Responses sion is intended to be included in health and other specialized are based on difficulty of condition on a 0-4 scale, from none surveys, and has already been implemented in national health to extreme difficulty.19 surveys in Chile (2016-2017)15 and Brazil (2017).16 Moreover, the WHO developed an extended 36-item ver- sion of the WHODAS that is the most detailed and extended set of questions, capturing the six core domains covered by the WG-SS as well as level of functioning in other domains of life (WHODAS2.0-ES). This includes Cognition (under- standing and communicating); Mobility (moving and getting around); Self-care (attending to one’s hygiene, dressing, eat- ing, and staying alone); Getting along (interacting with other people); Life activities (domestic responsibilities, leisure, work, and school); and Participation (joining in community activities, 14 The Brief MDS is available on the following websites: https://www.who.int/ disabilities/data/Implementation-guide-Brief-MDS.pdf?ua=1 and https://unstats. un.org/unsd/demographic-social/meetings/2016/bangkok--disability-measurement- and-statistics/Session-4/WHO.pdf 15 The national health survey (III Encuesta National de Salud) 2016-2017 of Chile is available on the Ministry of Health website at http://epi.minsal.cl/ 17 The full questionnaire is accessible at https://www.who.int/classifications/icf/ wp-content/uploads/2018/05/ENS_F1_corr8Mayo.pdf WHODAS2.0_36itemsSELF.pdf 16 The national health survey (Pesquisa Nacional de Saúde) 2017 of Brazil 18 The three versions of the WHODAS 2.0 are accessible at https:// is available on Brazilian Institute of Geography and Statistics (IBGE) website at apps.who.int/iris/bitstream/handle/10665/43974/9789241547598_eng. https://www.ibge.gov.br/estatisticas-novoportal/sociais/saude/9160-pesquisa- pdf;jsessionid=3C32F831016AD226EDCA8BD33E71B88F?sequence=1 nacional-de-saude.html?edicao=9177&t=microdados (click on “Arquivos de 19 The full questionnaire is accessible at https://www.who.int/healthinfo/survey/ Microdados da PNS 2013” updated on March 23rd, 2017) instruments/en/ 3. Measuring Disability in Household Surveys at the World Bank 3.1. A DISABILITY MODULE FOR For disaggregation by disability among children, the recom- mended tool is the UNICEF/Washington Group’s Module on MULTI-TOPIC HOUSEHOLD SURVEYS Child Functioning (WG-ES-C).21 This final section presents a set of key recommendations for implementing a Disability Module in multi-topic house- In line with the global consensus, this guide- hold surveys. As the World Bank moves towards a consistent book recommends the core set of disability ques- methodology for collecting disability data with National Sta- tions of the WG. The WG-SS can be added to any tistical Offices (NSOs), several factors should be considered national living standards or multi-topic house- in determining the standard set of questions. These include hold survey, typically conducted every three to identifying the key indicators and intended purposes for five years, to capture changes in disability prev- which this data will be used and compared across countries, alence. It can also be used in specialized surveys; and deciding whether mental health issues should be included a module for use in Labor Force Surveys (LFS) is in the disability definition, among others. currently being field tested, in partnership with the International Labor Organization (ILO). Standardization, both in the definition and the harmoniza- tion of data collection questions, is required to ensure the The purpose of the WG-SS module is to capture compa- international comparability of disability data. Globally, there is rable data on ‘functional disability’ across time and country, increasing consensus that the WG-SS is the most appropriate enabling the disaggregation of specific SDG indicators by dis- set of questions to use (unless the focus of the study is on ability status. To that end, this module focuses on ‘measuring children). This was confirmed by its endorsement from the difficulty functioning in six basic, universal actions (capabilities) Disability Data Disaggregation Joint Statement by the Disabil- that, in an unaccommodating environment would place an individ- ity Sector, which was signed in 2017 by UN agencies during ual at risk of restricted social participation’.22 The choice of the the fifth meeting of the Inter-Agency Expert Group on the six domains – seeing, hearing, walking, cognition, self-care, and Sustainable Development Goals ‘to ensure international compa- communication – follows the criteria of simplicity, brevity, uni- rability and comparability over time for the purposes of SDG data versality, and comparability, and refers to the areas that most disaggregation for adults’.20 The WG-SS was also endorsed by often limit the participation of individuals living in a variety several international commissions and institutions, such as the of countries with different cultures and economic resources. United Nations Statistical Division and the United Nations However, as noted in the 3rd revision of the Principles and Economic Commission for Europe. Furthermore, countries in Recommendations for Population and Housing Censuses,23 seeing, the Asia and Pacific Region, through the United Nations Eco- hearing, walking or climbing steps, and remembering or con- nomic and Social Commission for Asia and the Pacific, have 21 The UNICEF/Washington Group module on Child Functioning recommended their use, as well as bilateral agencies like DfID is available on line at http://www.washingtongroup-disability.com/ and the Australian Department of Foreign Affairs and Trade. washington-group-question-sets/child-disability/ 22 http://www.washingtongroup-disability.com/wp-content/uploads/2016/12/ WG-Document-2-The-Washington-Group-Short-Set-on-Functioning.pdf 20 The Disability Data Disaggregation Joint Statement by the Disability Sector 23 Document available at https://unstats.un.org/unsd/demographic-social/ is available on line at http://www.washingtongroup-disability.com/wp-content/ Standards-and-Methods/files/Principles_and_Recommendations/Population-and- uploads/2016/01/Joint-statement-on-disaggregation-of-data-by-disability-Final.pdf Housing-Censuses/Series_M67rev3-E.pdf 11  MEASURING DISABILITY IN HOUSEHOLD SURVEYS AT THE WORLD BANK  12 centrating are the four domains considered the most essential THE DISABILITY MODULE IN in determining disability status from census data in a way that MULTI-TOPIC HOUSEHOLD SURVEYS would allow for international comparison. In circumstances Multi-topic household surveys that intend to capture disabili- where it is not possible to ask all six questions due to time ty data face two main challenges: setting the best sample size or space constraints (especially in household surveys), these for the information desired and deciding whether to imple- four domains should be included as the essential minimum. ment mental health questions. In the process of including this module in household sur- veys, project leaders should consider the main WG recom- 3.2.1. SAMPLING DISABILITY mendations on reference period, respondents, target popu- Multi-topic household surveys can capture information on lation and module position inside the questionnaire. First of disability prevalence as well as the characteristics of people all, the WG-SS does not refer to a specific reference period, with disabilities (i.e. sex, education, occupation, etc.). Sample meaning that it does not address the duration or onset of size is determined by the survey’s overall objectives and ex- the disability. Test results suggest that people answering the pands with the degree of disaggregation that the survey in- WG-SS questions report difficulties they have in their usual/ tends to capture, such as gender, age, ethnicity, region of res- ongoing state. Only a small portion of respondents reported idence, or type of disability. Disaggregating data by disability having difficulties in one or more of the six domains, if such type allows for analyzing the relationship between disability difficulties were expected to be temporary (for example, lim- and various demographic or socioeconomic factors like ed- ited walking ability because of a leg in a temporary cast). ucation or employment status. The sample size needed for measuring disability prevalence is smaller than the sample Secondly, the questions should be self-reported and proxy needed for examining the correlation between disability and respondents avoided, except for people who are not capable other characteristics.24 of responding themselves. Ideally, the data should also include indications of when a proxy respondent is used. However, in many surveys, the low disability prevalence rate will result in an inadequate sample size for estimate pre- Thirdly, the WG-SS module is intended for the gener- cision, leading to large standard errors in a random sample, al population five years of age and above. However, due to especially when a stratified sampling strategy is not applied. circumstances of child development and transitions from According to the WG, a stratum specific to disability ensures infancy through adolescence, the WG acknowledges that dis- sufficient sample for meaningfully precise estimates. However, ability prevalence among those between five and 17 years targeting individuals with disabilities ex-ante cannot easily be of age is usually underestimated using the WG-SS. The WG done in multi-topic household surveys that base selection of thus developed the Child Functioning Module, which is more primary sampling units on census enumeration frames that appropriate for children from 2 to 17 years of age. However, contain little to no health information on the attributes of the because the Child Functioning Module may be too long to population therein. For example, in the LSMS-ISA multi-topic include in a multi-topic household survey, the WG-SS should household survey in Malawi (2010), only 0.92 percent of peo- also be administered to children between 5 and 17 years of ple interviewed had at least a severe disability. Conversely, age. Though it may result in an underestimation of the dis- when the WG-SS are added in census questionnaires, the dis- ability prevalence among children and adolescents, it will at ability prevalence rate is higher than in multitopic household least provide an indication of child functioning in the domains surveys. For instance, the WG-SS questions were included in covered for this population. the 2009 Vietnam Population and Housing Census (VPHC), Finally, the Disability Module should be included as a sub- and the proportion of households with at least one member section of an individual-level health section, or with the who has a severe disability was 5.3 percent (Mont and Nguy- demographic module collecting information on household en, 2018). In general, small disability samples can compromise family members. The WG does not recommend including the analytical research and the possibility of disaggregating indica- module at the end of a questionnaire. tors by disability status. Generating a sufficiently large sample of people with dis- 3.2. CHALLENGES IN IMPLEMENTING abilities in a general population is the main challenge for 24 Sampling information are available on the WG website at http://www. washingtongroup-disability.com/washington-group-blog/sampling-blog/ 13  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS Table 4. Employment disaggregated by varying disability definitions: adults 18-64 years (WG-SS) % working Definition of disabled: Overall prevalence With Without disability Disability 1 domain ‘some difficulty’ 35.4% 76.6% 60.2% 2 domains ‘some difficulty’ 14.9% 74.6% 48.5% 1 domain ‘a lot of difficulty’ 6.6% 73.5% 30.8% 1 domain ‘unable to do it’ 1.2% 71.4 % 14.6% Source: U.S. National Center for Health Statistics, 2013. Note: Employment disaggregated question is “What was your employment status last week?”. Disability status determined by use of the WG-SS (for 6 domains). The disability cut-off is defined in each row according to the first column. measuring correlations between disability and other factors. disabilities, leading to very low prevalence rates (Mont, 2007). Disability prevalence and disaggregation are sensitive to the In the LSMS-ISA surveys, the smallest prevalence of individ- definition used for disability. For instance, in line with SDG uals with disability, defined as ‘at least a lot of difficulty or not 8.5.2, Table 4 shows employment disaggregated by disability able at all in one domain’, are reported in Malawi (0.92 percent, status using data from the 2013 US National Health Interview or 517 of 56,218 people in IHS3 2010/11), in Uganda (3.05 Survey (NHIS). The NHIS survey includes the WG-SS ques- percent, or 419 of 13,752 people in UNPS 2009/2010, and 2.7 tions (explained above in Section 2.2). An individual can pres- percent, or 343 of 12,693 people in UNPS 2010/2011), and ent different levels of difficulty in one, some, or every domain. in Nigeria (2.51 percent, or 691 of 27,573 people in NGHS The recommended cut-off for defining a disabled person 2010/11, and 2.01 percent, or 555 of 27,573 people in NGHS is ‘at least one domain reported as a lot of difficulty’ (highlight- 2011/12). Larger disability prevalence is reported in Tanzania, ed in bold, Table 4). By this definition, the estimates for peo- where more than 1,500 people have ‘at least a lot of difficulty or ple 18-64 years of age illustrate that those with a disability not able at all in one domain’ (7.86 percent, or 1,616 of 20,562 are much less likely to be working (30.8 percent) than those people in NPS 2010/11). without a disability (73.5 percent). Table 4 illustrates how dif- The low rate of disability prevalence might be due to ferent definitions elicit different results: higher prevalence and non-sampling problems, such as question comprehension. For less disparity in employment when the cut-off includes those instance, at the beginning of the disability questions, the WG with minor difficulties; and lower prevalence and greater dis- provides a short introductory transition sentence that may parity when the cut-off is more restrictive and includes only not ensure the fully comprehension of the questions by enu- those with the most severe difficulties. merators and respondents. Thus, enumerators need to be In developing countries, most of the LSMS-ISA surveys well-trained on the WG-SS questions as well as on having an included the WG-SS in different waves to capture the disabil- empathic attitude towards the respondent. To better capture ity prevalence rate and disaggregation in household surveys disability prevalence, more time and attention should also be (see Table 3 in Annex). For instance, the 2011/12 Ethiopian dedicated to reviewing how the disability questions are trans- Rural Socioeconomic Survey uses the WG-SS and reports a lated, especially the critical words whose meaning might affect 2.21 percent prevalence rate of disability (‘a lot of difficulty or the response.25 not able at all in at least one domain’) (see Table 3A in Annex). Conversely, the Ethiopia’s 2007 Census used a single question asking if the person has ‘a problem of seeing, hearing, speaking and/ or standing/ walking/ sitting, body parts movement, functioning of hands/legs or mental retardation or mental problem or mental/ physical damages’ and found a national disability prevalence of 1 percent (CSA, 2007). A single question asking directly about disability tends to capture only very extreme and permanent 25 A translated protocol is available at the WG website: http://www. washingtongroup-disability.com/washington-group-question-sets/translations/ MEASURING DISABILITY IN HOUSEHOLD SURVEYS AT THE WORLD BANK  14 This guidebook recommends defining people Additionally, the WG-SS questions should be translated with disabilities as those with at least one domain using official tested translations. If this is not possible, it is reported as ‘a lot of difficulty’ or ‘not able to do important that the interviewers are trained to interpret the at all’. We also recommend following the WG questions in a way that identifies difficulties in doing the six instructions on sampling disability in order to activities and does not refer to disability or impairments; ensure international comparability. With regards translations that reflect this should be agreed upon prior to to disaggregation by disability among children, fieldwork and used consistently across interviews. the recommended tool is the WG-ES-C. This guidebook recommends giving extra 3.2.2. TRAINING ON DISABILITY attention to disability data collection during training sessions by encouraging empathic inter- QUESTIONS actions with respondents with disabilities, avoid- Asking about disability and impairments is not straightfor- ing the use of the word ‘disability’, and support- ward, particularly in contexts where such impairments are ing official translations of the WG-SS questions. associated with social stigma. Disability is a sensitive topic and to collect high quality data, training on how to interview 3.2.3. MENTAL HEALTH IN DISABILITY people with disabilities should receive extra attention.26 In- MODULES terviewers should be trained on: Sampling and training issues are particularly crucial on mental • Learning how to interact with people with disabilities, be- health and environmental barriers data collection. Questions ing respectful (as with any other respondent), and asking on mental health disabilities may not be uniformly appropri- about difficulties without shame or stigma. This includes ate across all contexts. In many places, especially low- and finding quiet spaces for the interview, using a sign language middle-income countries with low literacy rates and low in- interpreter in case of hearing difficulties, or speaking dices of mental health support and advocacy, asking about slowly or clearly in case of communication difficulties. In depression or anxiety would require qualified personnel and particular, interviewers must refrain from treating respon- additional methodological work to define these mental health dents like children or using a tone or gestures that imply a issues in context and to identify the appropriate questions certain response option as the “correct” one. to use. Questions with these complex concepts should not • Understanding and asking the WG-SS questions in terms be added to national multi-topic household surveys, in part of difficulties experienced in doing certain activities for because they have not been cognitively tested in low-income whatever reason, and then recording the responses. The countries, and further analysis is needed on cognitive testing WG suggests reading the responses categories only for in middle-income countries. Regarding an indicator for anxi- the first three questions, to avoid straining the respon- ety or depression, or broader behavior-based questions such dent’s patience. Words such as ‘disability’ or ‘handicap’ as those in the WHODAS2.0 modules or in the WG-ES-F, should never be mentioned in the interview process. the same cultural contexts for mental health issues would These terms often conjure a negative impression and need to be considered, for example by involving trained pro- tend to result in underreporting of disabilities. Similarly, fessionals in establishing culturally-appropriate questions for the word ‘suffering’, which is often associated with disease common behaviors associated with anxiety and depression. or illness but not necessarily with the life experiences of This guidebook, thus, does not recommend a person with disability, should not be used (Mont, 2007). including mental health questions in disability The WG also discourages training the interviewers on the modules for national multi-topic household ICF framework and various disability models, as it may surveys, as it would increase design and create more anxiety about the administration of these implementation costs and reduce international questions. comparability. 26 http://www.washingtongroup-disability.com/washington-group-blog/ training-ask-disability-questions-censuses-surveys/ 15  DISABILITY MEASUREMENT IN HOUSEHOLD SURVEYS 3.2.4. ENVIRONMENTAL FACTORS IN sion’ for integration in existing and regular household surveys.. However, this version may still be too long for a multi-topic DISABILITY MODULE household survey such as an LSMS survey. The WG-SS does not capture environmental factors. When there is interest in capturing the nature of environmental bar- For this reason, the WG has partnered with ILO to develop riers and the reason for non-participation, additional ques- a survey module that addresses barriers to employment for tions should be included. Labor Force Surveys (LFS), and with UNICEF to develop a similar module on education. When publicly released, these Data on environmental barriers and supports are very modules will provide detailed information on environmental rarely collected, leading to a limited understanding of the dai- factors affecting employment and education, respectively. ly life experienced by people with disabilities. Identifying the environmental and attitudinal barriers that hinder the partici- In conclusion, for a complete understanding of persons with pation of people with disabilities in life events should thus be disability, a disability module in a multi-topic household survey a priority in the next steps of the disability data agenda. For should capture the immediate environment as well as the fac- instance, the Living Conditions Among People with Disability tors related to the social and civic activities of individuals.This Survey 2013 - Key Findings Report in Zimbabwe (UNICEF, includes the physical and material features of the environment 2013) measured the magnitude of different environmental that an individual comes face to face with, as well as direct barriers, including Transport, Other surroundings, Availability contact with others such as family, acquaintances, peers, and of information, Availability of health care, Could not get help strangers. In particular, it should capture information about at home, Could not get help at work or school, Attitudes at factors that have a potential impact on health-related daily life home, Attitudes at school or work, Prejudice or discrimina- problems, such as the accessibility of the broad environment tion, Policies and rules of organizations, Government pro- the individual faces (including settings such as home, work- grams and policies, and Natural environment. The response place and school), the level of social support, the attitudes of options were daily, weekly, monthly, less than monthly, and others, and their social relationships. Moreover, information never. Natural environment was found to be among the most about the availability and need of personal assistance, assis- disabling of the barriers and included situations where people tive technologies, and modifications should be collected at could develop allergies or asthma. the individual level in a household questionnaire. In addition, questions about environmental and infrastructural barriers Moreover, since 2013, the WHO collects environmental should be included in a community level questionnaire. Finally, data by administrating the MDS Environmental Factors Mod- the integration of geospatial data with multi-topic household ule (module 3000), which identifies environmental factors surveys should also be explored, to better assess the poten- that may influence health-related daily life problems, such as tial benefit of using geospatial data in understanding the inter- accessibility, level of social support and/or negative attitudes actions between the environment and people with disabilities of others, accessibility of information, and use of medication at the community level. (module 3000A). The WHO has also developed the ‘Brief Ver- REFERENCES  16 REFERENCES Cappa, C., Mont, D., Loeb, M., Misunas, C., Madans, J., Comic,T., & de Castro, F. (2018).The development and testing of a module on child functioning for identifying children with disabilities on surveys. III: Field testing. Disability and health journal, 11(4), 510-518. Corsi, D., Melissa N., Finlay, J., & Subramanian, S. (2012). Demographic and Health Surveys: a profile. International journal of epi- demiology. 41. 10.1093/ije/dys184. CSA (Central Statistical Agency of Ethiopia). (2007). The 2007 population and housing census. Addis Ababa: Central Statistical Agency of Ethiopia. ESCAP. (2015). Disability at a Glance 2015 Strengthening Employment Prospects for People with Disabilities in Asia and the Pacific. United Nations. https://www.unescap.org/sites/default/files/SDD%20Disability%20Glance%202015_Final.pdf Hahn, H. (2002). Academic debates and political advocacy: The US disability movement. In Barnes, C., Oliver, M., & Barton, L.(Eds.), Disability studies today. Malden: Blackwell. Hanass-Hancock, J., & McKensie, T. (2017). People with disabilities and income related social protection measures in South Africa: Where is the gap? African Journal of Disability. Loeb, M., Mont, D., Cappa, C., De Palma, E., Madans, J., & Crialesi, R. (2018). The development and testing of a module on child functioning for identifying children with disabilities on surveys. I: Background. Disability and health journal, 11(4), 495-501. Maart, S., Eide, A. H., Jelsma, J., Loeb, M. E., & Toni M. Ka. (2007). Environmental barriers experienced by urban and rural disabled people in South Africa. Disability & Society. 22:4, 357-369. Mitra, S. (2018). Disability, Health and Human Development. Palgrave Studies in Disability and International Development. DOI 10.1057/978-1-137-53638-9_5. Mitra, S., Palmer, M., Kim, H., Mont, D., & Groce, N. (2017). Extra costs of living with a disability: A review and agenda for re- search. Disability and health journal, 10(4), 475-484. Mitra, S., Posarac, A. and Vick, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Devel- opment Vol. 41; pp.1–18. Mont, D., & Nguyen, C. (2018). Spatial variation in the poverty gap between people with and without disabilities: Evidence from Vietnam. Social Indicators Research, 137(2), 745-763. Mont, D. (2007). Measuring health and disability. Lancet, 369: 1548– 1663. doi: 10.1016/S0140-6736(07)60752-1. Oliver, M. (1990). The politics of disablement: A sociological approach. New York: St. Martin’s. Oliver, M. (1996). Understanding disability: From theory to practice. Basingtoke: MacMillan. Sen, A. K. (1999). Development as freedom. New York: Alfred A. Knopf. Trani, J. F., & Canning, T. I. (2013). Child poverty in an emergency and conflict context: A multidimensional profile and an identi- fication of the poorest children in Western Darfur. World Development, 48, 48–70. Trani, J., Bakhshi, P., Myer Tlapek, S., Lopez, D., & Gall, F. (2015). Disability and poverty in Morocco and Tunisia: A multidimensional approach. Journal of Human Development and Capabilities, 16(4), 518–548. Trani, J., Kuhlberg, J., Cannings, T., & Chakkal, D. (2016). Multidimensional poverty in Afghanistan: Who are the poorest of the poor? Oxford Development Studies, 44(2), 220–245. 17 REFERENCES UN (2011). Disability and the Millennium Development Goals. A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts. New York: United Nations (http://www.un.org/disabilities/docu- ments/review_of_disability_and_the_mdgs.pdf) UNDP (2006). Convention on the rights of people with disabilities. New York: United Nations (available at https://www.un.org/ development/desa/disabilities/convention-on-the-rights-of-people-with-disabilities.html, accessed on June 2018). UNICEF (2013). Living Conditions Among Persons with Disability Survey: Key Findings Report. Harare: UNICEF. US National Center for Health Statistics. (2013). National Health Interview Survey. Public-use data file and documentation. https://www.cdc.gov/nchs/index.htm WHO (World Health Organization). (1980). International classification of impairments, disabilities and handicaps: a manual of classification relating to the consequences of disease. Geneva: World Health Organization, Regional Office for Europe. WHO (World Health Organization). (2001). International Classification of Functioning and Disability. Geneva: World Health Organization, Regional Office for Europe. WHO (World Health Organization) / World Bank. (2011). World report on disability. Geneva: World Health Organization, Regional Office for Europe.   18 ANNEX 1. Disability by SDGs Table 1A. SDGs that address disability indirectly Target Indicator Goal 1. End poverty in all its forms everywhere 1.1. By 2030, eradicate extreme poverty for all people everywhere, currently 1.1.1. Proportion of population below the international poverty line, by sex, measured as people living on less than $1.25 a day age, employment status and geographical location (urban/rural) 1.2. By 2030, reduce at least by half the proportion of men, women and 1.2.1. Proportion of population living below the national poverty line, by sex children of all ages living in poverty in all its dimensions according to national and age definitions 1.3. Implement nationally appropriate social protection systems and 1.3.1. Proportion of population covered by social protection floors/systems, measures for all, including floors, and by 2030 achieve substantial coverage of by sex, distinguishing children, unemployed people, older people, people with the poor and the vulnerable disabilities, pregnant women, newborns, work-injury victims and the poor and the vulnerable Goal 3. Ensure healthy lives and promote well-being for all at all ages 3.3. By 2030, end the epidemics of AIDS, tuberculosis, malaria and 3.3.1. Number of new HIV infections per 1,000 uninfected population, by sex, neglected tropical diseases and combat hepatitis, water-borne diseases and age and key populations other communicable diseases 3.8. Achieve universal health coverage, including financial risk protection, 3.8.1. Coverage of essential health services (defined as the average coverage access to quality essential health-care services and access to safe, effective, of essential services based on tracer interventions that include reproductive, quality and affordable essential medicines and vaccines for all maternal, newborn and child health, infectious diseases, non-communicable diseases and service capacity and access, among the general and the most disadvantaged population) 3.8.2. Number of people covered by health insurance or a public health system per 1,000 population Goal 4. Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all 4.1. By 2030, ensure that all girls and boys complete free, equitable and 4.1.1. Proportion of children and young people: (a) in grades 2/3; (b) at the quality primary and secondary education leading to relevant and effective end of primary; and (c) at the end of lower secondary achieving at least a learning outcomes minimum proficiency level in (i) reading and (ii) mathematics, by sex 4.2. By 2030, ensure that all girls and boys have access to quality early 4.2.1. Proportion of children under 5 years of age who are developmentally childhood development, care and pre-primary education so that they are on track in health, learning and psychosocial well-being, by sex ready for primary education 4.3. By 2030, ensure equal access for all women and men to affordable and 4.3.1. Participation rate of youth and adults in formal and non-formal quality technical, vocational and tertiary education, including university education and training in the previous 12 months, by sex 4.4. By 2030, substantially increase the number of youth and adults who 4.4.1. Proportion of youth and adults with information and communications have relevant skills, including technical and vocational skills, for employment, technology (ICT) skills, by type of skill decent jobs and entrepreneurship 4.6. By 2030, ensure that all youth and a substantial proportion of adults, 4.6.1. Percentage of population in a given age group achieving at least a fixed both men and women, achieve literacy and numeracy level of proficiency in functional (a) literacy and (b) numeracy skills, by sex 19  Table 1A. SDGs that address disability indirectly (cont.) Target Indicator Goal 5. Achieve gender equality and empower all women and girls 5.2. Eliminate all forms of violence against all women and girls in the public 5.2.1. Proportion of ever-partnered women and girls aged 15 years and and private spheres, including trafficking and sexual and other types of older subjected to physical, sexual or psychological violence by a current or exploitation former intimate partner in the previous 12 months, by form of violence and by age 5.2.2. Proportion of women and girls aged 15 years and older subjected to sexual violence by people other than an intimate partner in the previous 12 months, by age and place of occurrence 5.6. Ensure universal access to sexual and reproductive health and repro- 5.6.1. Proportion of women aged 15-49 years who make their own informed ductive rights as agreed in accordance with the Programme of Action of the decisions regarding sexual relations, contraceptive use and reproductive International Conference on Population and Development and the Beijing health care Platform for Action and the outcome documents of their review conferences Goal 10. Reduce inequality within and among countries 10.3. Ensure equal opportunity and reduce inequalities of outcome, including 10.3.1. Proportion of the population reporting having personally felt discrim- by eliminating discriminatory laws, policies and practices and promoting inated against or harassed within the previous 12 months on the basis of a appropriate legislation, policies and action in this regard ground of discrimination prohibited under international human rights law Goal 16. Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels 16.1. Significantly reduce all forms of violence and related death rates 16.1.3. Proportion of population subjected to physical, psychological or everywhere sexual violence in the previous 12 months 16.1.4. Proportion of population that feel safe walking alone around the area they live 16.2. End abuse, exploitation, trafficking and all forms of violence against and 16.2.1. Proportion of children aged 1-17 years who experienced any physical torture of children punishment and/or psychological aggression by caregivers in the past month 16.2.3. Proportion of young women and men aged 18 - 29 years who experienced sexual violence by age 18 16.9. By 2030, provide legal identity for all, including birth registration 16.9.1. Proportion of children under 5 years of age whose births have been registered with a civil authority, by age 16.b. Promote and enforce non-discriminatory laws and policies for 16.b.1. Proportion of population reporting having personally felt sustainable development discriminated against or harassed in the previous 12 months on the basis of a ground of discrimination prohibited under international human rights law Goal 17. Strengthen the means of implementation and revitalize the global partnership for sustainable development 17.8. Fully operationalize the technology bank and science, technology and 17.8.1. Proportion of individuals using the Internet innovation capacity-building mechanism for least developed countries by 2017 and enhance the use of enabling technology, in particular information and communications technology Source: https://sustainabledevelopment.un.org/?menu=1300   20 Table 1B. SDGs that address disability directly Target Indicator Goal 4. Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all 4.5. By 2030, eliminate gender disparities in education and ensure equal 4.5.1. Parity indices (female/male, rural/urban, bottom/top wealth quintile access to all levels of education and vocational training for the vulnerable, and others such as disability status, indigenous peoples and conflict-affected, including people with disabilities, indigenous peoples and children in vulner- as data become available) for all education indicators on this list that can be able situations disaggregated 4.a. Build and upgrade education facilities that are child, disability and gender 4.a.1. Proportion of schools with access to: (a) electricity; (b) the Internet for sensitive and provide safe, nonviolent, inclusive and effective learning pedagogical purposes; (c)computers for pedagogical purposes; (d) adapted environments for all infrastructure and materials for students with disabilities; (e) basic drinking water; (f) single-sex basic sanitation facilities; and (g) basic handwashing facilities (as per the WASH indicator definitions) Goal 8. Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all 8.5. By 2030, achieve full and productive employment and decent work for all 8.5.1. Average hourly earnings of female and male employees, by occupation, women and men, including for young people and people with disabilities, and age and people with disabilities equal pay for work of equal value 8.5.2. Unemployment rate, by sex, age and people with disabilities Goal 10. Reduce inequality within and among countries 10.2. By 2030, empower and promote the social, economic and political 10.2.1. Proportion of people living below 50 percent of median income, by inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion age, sex and people with disabilities or economic or other status Goal 11. Make cities and human settlements inclusive, safe, resilient and sustainable 11.2. By 2030, provide access to safe, affordable, accessible and sustainable 11.2.1. Proportion of population that has convenient access to public transport systems for all, improving road safety, notably by expanding public transport, by sex, age and people with disabilities transport, with special attention to the needs of those in vulnerable situa- tions, women, children, people with disabilities and older people 11.7. By 2030, provide universal access to safe, inclusive and accessible, green 11.7.1. Average share of the built-up area of cities that is open space for and public spaces, in particular for women and children, older people and public use for all, by sex, age and people with disabilities people with disabilities 11.7.2. Proportion of people victim of physical or sexual harassment, by sex, age, disability status and place of occurrence, in the previous 12 months Goal 16. Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels 16.7. Ensure responsive, inclusive, participatory and representative 16.7.1 Proportions of positions (by sex, age, people with disabilities and decision-making at all levels population groups) in public institutions (national and local legislatures, public service, and judiciary) compared to national distributions 16.7.2 Proportion of population who believe decision-making is inclusive and responsive, by sex, age, disability and population group Source: https://sustainabledevelopment.un.org/?menu=1300 2. Short and Extended Sets of Questions by Surveys 21  Table 2. Comparing disability question sets WHODAS WG-SS WG-ES DHS-7 WHODAS 2.0-ES WHS-ES WHS-SS MDS 2.0-SS If ages 5 or older If ages 5 or older If ages 5 or older [no age filter] [no age filter] [no age filter] [no age filter] [no age filter] The next questions ask Same as WG-SS Would you say that (NAME) In the past 30 days, In the past 30 In the past 30 days, In the past 30 In the past 30 days, how much about difficulties you has…? how much difficulty days, how much how much difficulty days, how much difficulty did you have in… may have doing certain did you have in… difficulty did you did you have in… difficulty did you INTRO activities because of a have in… have in… HEALTH PROBLEM. 1. No - no difficulty Same as WG-SS 1. No difficulty 0. None 0. None 0. None Same as WHS-ES Same as WG-SS 2.Yes - some difficulty Plus: Read answer 2. Some difficulty 1. Mild 1. Mild 1. Mild 3.Yes - a lot of difficulty options again with 3. A lot of difficulty 2. Moderate 2. Moderate 2. Moderate 4. Cannot do at all each question. 4. Cannot [DO IT] at all 3. Severe 3. Severe 3. Severe 8. Don’t know 4. Extreme 4. Extreme 4. Extreme ANSWER OPTIONS 1. Do you have Do you (does Does (NAME) wear glasses (none) (none) Do you (does Do you (does Same as WG-SS difficulty seeing even if NAME) wear or contact lenses to help them NAME) wear glass- NAME) wear wearing glasses? glasses? (Yes/No) see? [Yes/No] es? (Yes/No) glasses? (Yes/ Do you have [If YES] I would like to know [If YES] No) difficulty seeing if (NAME) has difficulty seeing ... recognizing a [If YES] (even if wearing even when wearing glasses or person, you know ... recognizing VISION glasses)? contact lenses. across the road? a person, you [If NO] I would like to know if … recognizing an know across the (NAME) has difficulty seeing. object at arm’s road? length? 2. Do you have Do you (does Does (NAME) wear a hearing (none) (none) (none) (none) Same as WG-SS difficulty hearing (even NAME) use a aid? [Yes/No] if using a hearing aid)? hearing aid? ** Exclude in countries where Do you have hearing aid is not common. difficulty hearing [If YES] I would like to know if (even if using a (NAME) has difficulty hearing. HEARING hearing aid)? [If NO] I would like to know if (NAME) has difficulty hearing even when using a hearing aid? Table 2. Comparing disability question sets (cont.) WHODAS WG-SS WG-ES DHS-7 WHODAS 2.0-ES WHS-ES WHS-SS MDS 2.0-SS 3. Do you have Same as WG-SS Same as WG-SS … standing for long … standing for … moving around? … moving Same as WG-SS difficulty walking or PLUS, Additional Note: in all cases where DHS-7 periods such as 30 long periods … doing vigorous around? PLUS: climbing steps? recommendations*: is “Same as WG-SS”, the minutes? such as 30 activities (such as How much difficulty do you Do you have sentence is a bit different (“I … standing up from minutes? running 3km or have moving around because of difficulty moving would like to know if (NAME) sitting down? … walking a long cycling?) your health? around inside your has difficulty…”) but the con- … moving around distance, such as Because of your health, how home? tent/task is identical. inside your home? a kilometer? much difficulty do you have Do you have diffi- … getting out of doing things that require the culty going outside your home? use of your hands and fingers, of your home? … walking a long such as picking up small objects Do you have distance, such as a or opening a container? difficulty walking a kilometer? How much difficulty do you long distance such have with shortness of breath MOBILITY as a kilometer (or because of your health? equivalent)? How much difficulty do you Do you have have doing household tasks difficulty in using because of your health? your hands and Because of your health, how fingers, such as for much difficulty do you have picking up small coping with all the things you objects or opening have to do? and closing How many bodily aches or containers? pains do you have? 4. Do you have Same as WG-SS Same as WG-SS … concentrating … concentrat- … concentrating … concentrating Same as WG-SS difficulty remembering on doing something ing on doing and remembering and remembering PLUS: or concentrating? for 10 minutes? something for 10 things? things? How much difficulty do you … remembering minutes? … learning a new have learning a new task to do important … learning a task? because of your health? things? new task, for … analyzing and finding solutions to example, learning problems in day-to- how to get to a day life? new place? … learning a new task, for example, COGNITION learning how to get to a new place? … generally understanding what people say? … starting and maintaining a conversation? 5. Do you have Same as WG-SS Almost the same as WG-SS … washing your … washing your … washing or … washing or Same as WG-SS difficulty (with self-care I would like to know if (NAME) whole body? whole body? getting dressed by getting dressed PLUS:   such as) washing all has difficulty washing all over or … getting dressed? … getting yourself? by yourself? Because of your health, how 22 over or dressing? dressing. … eating? dressed? … maintaining your much difficulty do you have … staying by your- general appearance? toileting? SELF-CARE self for a few days? Table 2. Comparing disability question sets (cont.) 23  WHODAS WG-SS WG-ES DHS-7 WHODAS 2.0-ES WHS-ES WHS-SS MDS 2.0-SS 6. Using your Same as I would like (as in cognition) (see below) (none) (none) Same as WG-SS usual (customary) WG-SS to know if … generally understanding what people say? PLUS: language, do you (NAME) has … starting and maintaining a conversation? Because of your health, how have difficulty difficulty (see below) much difficulty do you have on communicating, for communi- starting, sustaining and ending a example cating when conversation? understanding or using his/ being understood? her usual COMMUNICATION language. (none) (none) (none) … how much of a problem did you have in joining in community … how much … personal … personal Same as WG-SS activities (for example, festivities, religious or other activities) in of a problem relationship or relationship PLUS: the same way as anyone else can? did you have in participate in or partici- How much difficulty do you have … how much of a problem did you have because of barriers or joining in com- the commu- pate in the sleeping because of your health? hindrances in the world around you? munity activities nity? commu- How much difficulty do you have … how much of a problem did you have living with dignity (for example, … feeling sad nity? providing care or support for because of the attitudes and actions of others? festivities, reli- or depressed? … feeling others because of your health? … how much time did you spend on your health condition or gious or other … dealing with sad or de- Because of your health, how its consequences? acztivities) in conflicts and pressed? much difficulty do you have with … how much have you been emotionally affected by your the same way tensions? joining community activities, such health problems? as anyone else … feeling as festivities, religious or other … how much of a problem did your family have because of your can? worried or activities? health problems? … how much anxious? To what extent do you feel sad, … how much of a problem did you have in doing things by have you been low or depressed because of yourself for relaxation or pleasure? emotionally your health? … dealing with people you do not know? affected by To what extent do you feel wor- … maintaining a friendship? your health ried, nervous or anxious because ... getting along with people who are close to you? problems? of your health? … making new friends? … dealing with Because of your health, how … sexual activities? people you do much difficulty do you have not know? getting along with people who SOCIAL INTERACTION & EMOTIONAL HEALTH … maintaining a are close to you, including your friendship? family and friends? (none) (none) (none) … taking care of your household responsibilities? … taking care of (none) (none) Same as WG-SS .. doing your most important household tasks well? your household … getting all the household work done that you needed responsibilities? PLUS: to do? • How much difficulty do you … getting your household work done as quickly as have with your day-to-day work needed? or school because of your … your day-to-day work/school? health? … doing your most important work/school tasks well? … getting all the work done that you need to do? … getting your work done as quickly as needed? LABOR IMPACT … have you had to work at a lower level because of a health condition? … did you earn less money as the result of a health condition? Source: Own compilation 3. WG-SS across LSMS-ISA surveys Table 3. Disability module/questions: comparision between lsms surveys, dhs-7, and washington group recommendations Washington Group DHS-7 Malawi IHS3 2010/11 Uganda - UNPS Ethiopia – E(R) Tanzania – NPS Nigeria – GHS 6 core questions (and some 2009/10 and 2010/11 SS 2010/11 2010/11 and recommended*) 2011/12, 2012/13 Proposed additions for the 2013/14 and 2016 Extended Set are indicat- ed in italics. If ages 5 or older If ages 5 or older If ages 5 or older If ages 5 or older: Asked of all ages If ages 5 or older: No age filter The next questions ask about Because of a physical, in 2011, asked Because of a physical, difficulties you may have doing mental or emotional only for ages 5+ mental or emotional certain health in following years health INTRO activities because of a HEALTH condition… condition… PROBLEM. a. No - no difficulty Would you say that (NAME) has…? 1. No difficulty 1. No - no difficulty 1. No difficulty 1. No, not at all 1. No. no b.Yes – some difficulty 1. No difficulty (seeing) 2.Yes - some difficulty 2.Yes - some difficulty 2.Yes - some 2. No, no difficulty c.Yes – a lot of difficulty 2. Some difficulty 3.Yes - a lot of difficulty 3.Yes - a lot of difficulty difficulty difficulty with assistive 2.Yes. some d. Cannot do at all 3. A lot of 4. Cannot 4. Cannot (see) at all 3.Yes - a lot of device 3.Yes. a lot difficulty perform activity at all difficulty 3.Yes, some difficulty 4. Cannot (see) Read answer options again with 4. Cannot (see) at all 4. Cannot 4.Yes, a lot of difficulty each question. 5. Don’t know perform activity 4.Cannot INDICATED) at all perform ANSWER OPTIONS (UNLESS OTHERWISE Do you (does NAME) wear 26. Does (NAME) wear glasses or (none) (none) (none) (none) (none) glasses? contact lenses to help them see? 1= Yes 2=No VISION 1. Do you have difficulty seeing 27. [If 26=1] I would like to know if Same as WG Does [NAME] have Same as WG Same as Uganda Same as WG (even if wearing glasses)? (NAME) has difficulty seeing even when difficulty seeing, even wearing glasses or contact lenses. if he/she is wearing 28. [If 26=2] I would like to know if glasses? (NAME) has difficulty seeing. Do you (does NAME) use a 29. Does (NAME) wear a hearing aid? (none) (none) (none) (none) (none) hearing aid? ** This question may be excluded in countries where wearing a hearing aid is not common. HEARING 2. Do you have difficulty hearing 30. [If 29=1] I would like to know if Same as WG Does [NAME] have Same as WG Same as Uganda Same as WG (even if using a hearing aid)? (NAME) has difficulty hearing. difficulty hearing, even if he/she is wearing a 31. [If 29=1] I would like to know if hearing aid? (NAME) has difficulty hearing even when using a hearing aid? ** This question may be excluded in   countries where wearing a hearing aid is not common. 24 Table 3. Disability module/questions: comparision between lsms surveys, dhs-7, and washington group recommendations (cont.) Washington Group DHS-7 Malawi IHS3 2010/11 Uganda - UNPS Ethiopia Tanzania – Nigeria – GHS 25  6 core questions (and some 2009/10 and 2010/11 – E(R)SS NPS 2010/11 and 2012/13 recommended*) 2011/12, 2010/11 Proposed additions for the 2013/14 2016 Extended Set are indi- and cated in italics. 2. Do you have difficulty hearing 30. [If 29=1] I would like to know Same as WG Does [NAME] have Same as Same as Same as WG (even if using a hearing aid)? if (NAME) has difficulty hearing. difficulty hearing, even WG Uganda if he/she is wearing a 31. [If 29=1] I would like to know hearing aid? if (NAME) has difficulty hearing even when using a hearing aid? ** This question may be excluded in countries where wearing a HEARING (CONT.) hearing aid is not common. 3. Do you have difficulty walking 34. I would like to know if Same as WG Does [NAME] have Same as Same as Same as WG or climbing steps? (NAME) has difficulty walking or difficulty walking or WG Uganda climbing steps. climbing steps? MOBILITY (none) (none) (none) (none) (none) (none) Additional (all Y/N): Can you do vigorous activities like running, lifting heavy objects, participating in sports or doing hard labor? Can you walk uphill? Can you do activities such as bending over or stooping? Can you walk over 100 meters? Can you walk more than one kilometer? 4. Do you have difficulty re- 33. I would like to know if Same as WG Does [NAME] have Same as Same as Same as WG membering or (NAME) has difficulty difficulty remembering WG Uganda concentrating? remembering or concentrating. or concentrating? COGNITION 5. Do you have 35. I would like to know if Do you have difficulty (with Does [NAME] have Same as Same as Same as Malawi difficulty (with self-care such as) (NAME) has difficulty washing all self-care such as) washing difficulty (with self-care Malawi Uganda washing all over or dressing? over or dressing. all over or dressing, feeding, such as) washing all toileting, etc.? over or dressing, SELF-CARE feeding, toileting, etc.? 6. Using your usual (customary) 32. I would like to know if 6. Using your usual Using your usual Same as Same as Same as Malawi language, do you have difficulty (NAME) has difficulty communi- language, do you have [NAME OF LAN- Malawi Uganda communicating, for cating when using his/her usual difficulty communicating, GUAGE] language, does example understanding or being language. for example [NAME] have difficulty understood? understanding or being communicating; for understood? example, understanding or being understood? COMMUNICATION Table 3. Disability module/questions: comparision between lsms surveys, dhs-7, and washington group recommendations(cont.) Washington Group DHS-7 Malawi IHS3 2010/11 Uganda - UNPS Ethiopia – E(R)SS Tanzania – NPS Nigeria – GHS 6 core questions 2009/10 and 2010/11 2011/12, 2013/14 and 2010/11 2010/11 and 2012/13 (and some recom- mended*) Proposed additions for the 2016 Extend- ed Set are indicated in italics. (none) (none) (none) (none) For each For each question: How For each question: year of onset old was [NAME] when question: How old were the you when the difficulty seeing began? difficulty (seeing) began? ONSET (none) (none) Asked once per HH member if any of Same as Malawi Asked once per HH member if Same as Malawi Same as Malawi the above answer codes 2-4: any of the above answer codes 2-4: Does this difficulty reduce the amount of work [NAME] can do at Does this difficulty reduce the home, at work or at school? amount of work you can do at 1= Yes, all the time home, at work or at school? 2= Yes, sometimes 1= Yes, all the time 3= No 2= Yes, 4= NA (If not working or not attend- sometimes LABOR IMPACT ing school) 3= No 4= NA (If not working or not Separate answers for (a) at home, (b) attending school) at school, and (c) at work. (none) (none) During the past 12 months, what Same as Malawi (none) Same as Malawi Same as Malawi measures are taken to improve [NAME]’s performance of activities? 1= None 2= Surgical operation 3= Medication 4= Assistive devices (glasses, wheel- chair, braces, hearing aid, artificial limbs) 5= Special education 6= Skills training (vocational) 7= Activity of Daily Living (ADL) REHABILITATION training 8= Counseling 9= Spiritual/traditional healer 96= Other (specify)   26 SELECT LSMS GUIDEBOOKS Trees on Farms: Measuring Their Contribution to Household Welfare Daniel C. Miller, Juan Carlos Muñoz-Mora, Alberta Zezza, and Josefine Durazo September 2019 Food Data Collection in Household Consumption and Expenditure Surveys Prepared by The Inter-Agency and Expert Group on Food Security, Agricultural and Rural Statistics and endorsed by the forty-ninth session of the United Nations Statistical Commission, New York, 6–9 March 2018 April 2019 Measuring Household Expenditure on Education Gbemisola Oseni, Friedrich Huebler, Kevin McGee, Akuffo Amankwah, Elise Legault, and Andonirina Rakotonarivo December 2018 Spectral Soil Analysis & Household Surveys Sydney Gourlay, Ermias Aynekulu, Calogero Carletto, and Keith Shepherd October 2017 The Use of Non-Standard Units for the Collection of Food Quantity Gbemisola Oseni, Josefine Durazo, and Kevin McGee July 2017 Measuring the Role of Livestock in the Household Economy Alberto Zezza, Ugo Pica-Ciamarra, Harriet K. Mugera, Titus Mwisomba, and Patrick Okell November 2016 Land Area Measurement in Household Surveys Gero Carletto, Sydney Gourlay, Siobhan Murray, and Alberto Zezza August 2016 Measuring Asset Ownership from a Gender Perspective Talip Kilic and Heather Moylan April 2016 Measuring Conflict Exposure in Micro-Level Surveys Tilman Brück, Patricia Justino, Philip Verwimp, and Andrew Tedesco August 2013 Improving the Measurement and Policy Relevance of Migration Information in Multi-topic Household Surveys Alan de Brauw and Calogero Carletto May 2012 Design and Implementation of Fishery Modules in Integrated Household Surveys in Developing Countries Christophe Béné, Asafu D.G. Chijere, Edward H. Allison, Katherine Snyder, and Charles Crissman May 2012 Agricultural Household Adaptation to Climate Change: Land Management & Investment Nancy McCarthy December 2011 Living Standards Measurement Study www.worldbank.org/lsms data.worldbank.org