68498 Workshop on Strengthening Disability Measurement across South Asian Countries Funded by the Trust Fund for Economically Sustainable Development and World Bank Lebua Hotel and the Dome at State Tower Bangkok, Thailand April 2-4, 2008 This page is intentionally left blank 2 Table of Contents I. Agenda .................................................................................................................................. 4 II. Participants List ................................................................................................................... 6 III. Session 1: Introduction ........................................................................................................ 8 IV. Session 2: Definition of Disability – Questions for Discussion.......................................... 12 V. Session 3: New Thinking on Disability Measurement ........................................................ 13 VI. Session 4: From Census to Surveys .................................................................................... 24 VII. Session 5: Policy Dimensions of Disability Measurement - Brazil .................................... 38 VIII. Session 6: Good Questions/Bad Questions ......................................................................... 49 IX. Session 7: Developing a Matrix of Functioning .................................................................. 56 X. Session 8: Experience Operationalizing Surveys with a Disability Module - Vietnam ................................................................................................................................ 58 XI. Session 9: Training Needs .................................................................................................. 68 XII. Session 10: Cognitive Testing ............................................................................................. 74 A. Session 10 (A): Cognitive Testing for Question Design ................................................ 74 B. Session 10 (B): Cognitive Testing – Experience in Vietnam ......................................... 79 XIII. Session 11: Policy and Politics ........................................................................................... 82 A. Session 11 (A): Policy and Politics - Vietnam ................................................................ 82 B. Session 11 (B): Policy and Politics - Brazil .................................................................... 90 3 Agenda Trust Fund for Economic and Socially Sustainable Development: Strengthening Capacity for Disability Measurement across South Asia Time Topic Presenter(s) APRIL 2 8:30-9:00 Check-in and retrieve packets 9:00 – 9:20 Introductions Susan Hirshberg 9:20 – 9:30 Background and objectives of workshop Susan Hirshberg 9:30 – 10:00 Brainstorming: definition of disability Susan Hirshberg and What factors create a disability? (vignettes) Daniel Mont 10:00 – 10:30 New thinking on disability measurement: Dan Mont  The social model, ICF (and beyond)  Moving from a conceptual definition of disability to an operational one 10:30 – 10:45 TEA BREAK 10:45 – 11:45 Purpose and scope of surveys: Jennifer Madans  Transitioning from census work to surveys  The new concept of disability in the context of household surveys 11:45 – 1:00 Policy dimensions: Brazil Izabel Maior  The impetus behind the change in methodology  How various stakeholders reacted to a dramatic increase in the reported prevalence of disability  The challenges and opportunities this generated  The policy implications of the improved data, and how the Government of Brazil and other stakeholders used these data to advance policy objectives 1:00-2:00 LUNCH BREAK 2:00-3:00 Good questions/bad questions Marguerite Schneider Framing Questions  Capturing levels of physical and intellectual functioning across domains  Questions about enabling environment (economic, education, health, accessibility, social), eliminating barriers  Associated costs of disability  Structuring surveys based on intent 3:00-3:45 Group work: creating a matrix Jennifer Introduce - Groups 3:45-4:00 TEA BREAK 4:00-5:00 Report back Groups 4 Time Topic Presenter(s) APRIL 3 9:00-9:15 Review of Day 1 and Introduction to Day 2 Jennifer Madans 9:15-10:15 Experience operationalizing a survey with a disability N. Phong module 10:15-11:00 Begin country team work on questions/questionnaires Groups, facilitated by Mont, Schneider, Madans, Phong 11:00-11:15 TEA BREAK 11:15-1:00 Continue in groups 1:00-2:00 LUNCH BREAK 2:00-2:45 Sharing questions and feedback Plenary 2:45-3:45 Training needs Marguerite Schneider,  Enumerators UNESCAP and APCD  Other training needs 3:45-4:00 TEA BREAK 4:00-4:45 Field testing and cognitive testing Dan Mont 4:45-5:15 Experience with field testing from India 7:30 Group Dinner APRIL 4 9:00-10:00 Plenary group on panels/questionnaires: Dan, Jennifer and Margie Cross-country, international comparability? Mental Health and Mental Illness? Children? 10:00-11:00 Policy and politics: working across ministries Izabel Maior and N. Phong 11-11:15 TEA 11:15-1:00 Next steps: Countries present plans Susan Hirshberg Discussion: support needed, plan for reconvening via VCs 1:00-2:00 LUNCH 2:00-3:00 Feedback and open discussion All Facilitators 5 Participants List NO. NAME TITLE CONTACT Bank Staff 1 Susan E. Hirshberg South Asia Regional Disability World Bank, Coordinator Washington shirshberg@worldbank.org 2 Daniel Mont Sr. Economist World Bank, Washington dmont@worldbank.org 3 Shaikh Ahmed Economist World Bank, Dhaka Sahmed12@worldbank.org 4 Shonali Sen Consultant World Bank, New Delhi sen.shonali@gmail.com Presenters 5 Jennifer Madans Associate Director for Science National Center for Health Statistics 6 Marguerite Schneider Chief Research Manager, Child, Human Sciences Research Youth, Family and Social Dev. Council Pretoria, South Africa 7 Mr. Nguyen Phong Director, Social and General Statistics Office Environmental Department Hanoi, Viet Nam 8 Izabel Maior National Coordinator for President’s Office Inclusion of Persons with Brasilia, Brazil Disabilities 9 Thereza Cunha Attendant Mattos-Cunah Bangladesh 10 Mr. Mainul Hasan Joint Secretary (Admin) MOSW Dhaka, Bangladesh 11 Dr. Kamal Abdul Naser Director General, Directorate of MOSW Chowdhury Social Services Dhaka, Bangladesh 12 Mr. Khandoker M. Director General, Directorate of Ministry of *** Asaduzzaman Primary Education Mr. Dileep K. Das Deputy Secretary Planning and Development Department 14 Mr. Md. Zahidul Hoque Project Director/ Deputy Bangladesh Bureau of Sardar Director, HIES Project Statistics Government of Bangladesh 15 Mr. Md. Shamsul Alam Project Director/ Deputy Bangladesh Bureau of Director, MSCW Statistics Government of Bangladesh 16 Mr. Mosharraf Hossain Country Director ADD Dhaka, Bangladesh 17 Mr. Samir Ranjan Nath Senior Research Fellow, BRAC Research & Evaluation Division Dhaka, Bangladesh 6 NO. NAME TITLE CONTACT 18 Ms. Mehnaz Rabbani Research Fellow II, Research & BRAC Eval. Division Dhaka, Bangladesh 19 Mr. Md. Anwar Project Director, BBS Bangladesh Bureau of Hossain Statistics Government of Bangladesh 20 Dr. Khondaker Joint Secretary Ministry of Establishment Showkat Hossain Government of Bangladesh Pakistan 21 Mr. Muhammad Arshad Deputy Chief, Social Welfare Ministry of Planning and Section, Plan. & Dev. Division Development 22 Mr. Shafiq-uz-Zaman Joint Secretary Ministry of Statistics Government of Pakistan 23 Mr. Khalid Mahmood Deputy Director General Federal Bureau of Statistics Government of Pakistan 24 Mr. Sajjad Haider Section Officer Economic Affairs Division Yaldaram Government of Pakistan 25 Mr. Kamran Akbar Chief Operations Officer Pakistan Poverty Alleviation Fund Islamabad, Pakistan 26 Mr. Khalid Naeem Director General, Directorate MOSW General of Special Education Government of Pakistan 27 Dr. Khalid Jamil Department of Physical Akhtar Education and Rehabilitation of Disabled, Lahore India 28 Dr. Mithu Alur Founder /Chairperson National Resource Centre for Inclusion 29 Mr. S. Mukherjee Director - Data Processing National Sample Survey Division, HQ Organization 30 Mr. S. K. Ray Director, NSSO (SDRD) Ministry of Statistical and Program Implementation 31 Dr. S.K. Nath Director General, Central Ministry of Statistical and Statistical Organization CSO Program Implementation 32 Mr. R. C. Sethi Additional Registrar General Office of the Registrar India New Delhi, India 33 Ms. Anuradha Mohit Director, National Institute for Ministry of Social Justice and the Visually Handicapped Empowerment, GOI 34 Ms. Richa Sharma Deputy Secretary, Dept. of Ministry of Human Resources School Education and Literacy and Development 35 Shri R. Rangasayee Director, Ali Yavar Jung National Institute for the Hearing Handicap 7 SESSION I: Introduction 8 9 10 11 SESSION 2: Definition of Disability Questions for Discussion 1. A young girl has a vision problem that does not limit her ability to see up close, but she can not see things clearly that are more 2 meters away. This problem is correctable by glasses. a. Does she have a disability? b. Would your answer change if she had no access to glasses? c. What if she had no access to glasses and dropped out of school because her inability to see the blackboard made it too difficult for her to keep up with the rest of the class? 2. A working age man has a spinal injury which leaves him paralyzed from the waist down. a. Does he have a disability? b. What if he had a wheelchair and lived in a community with accessible structures and transportation? c. What if prior to his accident his occupation had been a construction worker? What if it had been a lawyer? 3. A woman is perfectly able to move about her apartment, but can not walk more than about 10 meters without significant difficulty. a. Does she have a disability? b. What if she were 85 years old? c. What if she were 25 years old and had two small children? 4. A young man living in a small city has epilepsy. a. Does he have a disability? b. What if he has 1 or 2 episodes a year? What if he has 1 or 2 a week? c. What if he is on medication that has prevented any episodes for the last 3 years? 5. You have been asked to write the eligibility criteria for a disability pension program. Should the criteria be based on Body Functions, Activities, or Participation? Which of the above people should qualify for benefits? 6. Define the nature and extent of a disability which would require a child going to a ‘special school.’ 7. You have been asked to design a new mass transit system for your capital city. Which of the above people should you consider in making that design 12 SESSION 3: New Thinking on Disability Measurement 13 14 15 16 17 18 19 20 21 22 23 SESSION 4: From Census to Surveys ��������������������������    24 ��������������������������  25 ��������������������������     26 ��������������������������    27 ��������������������������     28 ��������������������������     29 ��������������������������    30 ��������������������������     31     ��������������������������    32     ��������������������������    33    ��������������������������    34      ��������������������������    35      ��������������������������    36      ��������������������������  37 SESSION 5: Policy Dimensions of Disability Measurement – BRAZIL      38      39      40      41      42        43        44     45       46      47      48 SESSION 6: Good Questions/Bad Questions        49       50           51       52       53       54       55 SESSION 7: Developing a Matrix of Functioning Survey Questionnaire Matrix Basic activity domains Complex activity domains / Participation Questionnaire Topic/Type Getting along Participation Vision (1) Hearing (1) Mobility Communication Cognition Upper Body Learning Affect Pain (5) Fatigue (5) ADL Life activities with people in society Short Set - Single CAPACITY questions (1) Extended Set - Multiple questions (1) PERFORMANCE Use of Assistive Devices Micro-E (2) Functioning with Assistance Experience of pain / fatigue (5) Age at Onset Cause Duration Impact (5) Meso-environment (3) Macro-environment (4) Washington Group Short Set Question Domains NOTES: (1) Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These are both measured WITH the use of assistive devices and thus do NOT represent true measures of Capacity. As such, Extended Set multiple questions are captured under Performance (Row 4). NB - SEVERITY is captured in response categories (2) Micro environment - technical and personal assistance that follows the person wherever they go (e.g. wheelchair, eye glasses, personal attendant). (3) Meso environment - the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). Meso environmental questions may also be non-domain specific. (4) Macro environment - that which affects a whole country, such as policies and legislation, general societal attitudes and practices. Macro-enviornmental questions are NOT domain specific. (5) Pain and Fatigue are not obvious functional domains (nor are they in the ICF) however they can be captured as domains (columns) or across domains (rows: Impact and Experience of...) Survey Questionnaire Matrix Basic activity domains Complex activity domains / Question Getting naire Participat along Life Mobility Topic/Ty Vision (1)Hearing (1) Cognition Communication Upper BodyLearning Affect Pain (5) Fatigue (5) ADL with activities ion in pe society people Short Set - Single questions CAPACITY (1) Extended Set - Multiple questions (1) Use of Assistive PERFORMANCE Devices Micro-E (2) Functioni ng with Assistanc e Experien ce of pain / fatigue (5) Age at Onset Cause Duration Impact (5) Meso- environm ent (3) Macro- environm ent (4) Washington Group Short Set Question Domains NOTES: (1) Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These NB - SEVERITY is captured in response categories (2) Micro environment - technical and personal assistance that follows the person wherever they go (e.g. wheelchair, eye glasses, personal attendant). (3) Meso environment - the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others). Meso environmental questions may also be non-domain specific. (4) Macro environment - that which affects a whole country, such as policies and legislation, general societal attitudes and practices. Macro-enviornmental questions are NOT domain specific. (5) Pain and Fatigue are not obvious functional domains (nor are they in the ICF) however they can be captured as domains (columns) or across domains (rows: Impact and Experience of...) 57 SESSION 8    �������������������������        ������������������������������    59      ������������������������������    60     ������������������������������    61      ������������������������������    62      ������������������������������    63      ������������������������������    64    ������������������������������    65     ������������������������������    66    ������������������������������    67 SESSION 9: Training Needs      68       69          70    71      72        73 SESSION 10(A) ���������������������������    74 �������������������������� 75 ��������������������������   76    ���������������������������      77   ��������������������������       78    ��������������������������      79   SESSION 10(B) ����������������������   80 �������������������������   81   ��������������������������       82   ��������������������������      83   ��������������������������  84 SESSION 11(A): Policy and Politics Vietnam 85 ������������������������������    86 ������������������������������ 87    ������������������������������ 88    ������������������������������ 89    ������������������������������ 90 SESSION 11(B): Policy and Politics Brazil 91 ����������������������������� 92 ������������������������������ 93 ������������������������������   94 ������������������������������   95 �����������������������������������  96