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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
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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
4
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
What factors create a disability? (vignettes)
Susan Hirshberg and
Daniel Mont
10:00 – 10:30 New thinking on disability measurement:
The social model, ICF (and beyond)
Moving from a conceptual definition of disability to
an operational one
Dan Mont
10:30 – 10:45 TEA BREAK
10:45 – 11:45 Purpose and scope of surveys:
Transitioning from census work to surveys
The new concept of disability in the context of
household surveys
Jennifer Madans
11:45 – 1:00 Policy dimensions: Brazil
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
Izabel Maior
1:00-2:00 LUNCH BREAK
2:00-3:00 Good questions/bad questions
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
Marguerite Schneider
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
5
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
module
N. Phong
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
Enumerators
Other training needs
Marguerite Schneider,
UNESCAP and APCD
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:
Cross-country, international comparability?
Mental Health and Mental Illness?
Children?
Dan, Jennifer and Margie
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
Discussion: support needed, plan for reconvening via VCs
Susan Hirshberg
1:00-2:00
LUNCH
2:00-3:00 Feedback and open discussion All Facilitators
6
Participants List
NO. NAME TITLE CONTACT
Bank Staff
1 Susan E. Hirshberg
South Asia Regional Disability
Coordinator
World Bank,
Washington
2 Daniel Mont
Sr. Economist World Bank,
Washington
3 Shaikh Ahmed Economist World Bank,
Dhaka
4 Shonali Sen
Consultant World Bank,
New Delhi
Presenters
5 Jennifer Madans
Associate Director for Science
National Center for Health
Statistics
6 Marguerite Schneider
Chief Research Manager, Child,
Youth, Family and Social Dev.
Human Sciences Research
Council
Pretoria, South Africa
7 Mr. Nguyen Phong Director, Social and
Environmental Department
General Statistics Office
Hanoi, Viet Nam
8 Izabel Maior
National Coordinator for
Inclusion of Persons with
Disabilities
President’s Office
Brasilia, Brazil
9 Thereza Cunha
Mattos-Cunah
Attendant
Bangladesh
10 Mr. Mainul Hasan Joint Secretary (Admin) MOSW
Dhaka, Bangladesh
11 Dr. Kamal Abdul Naser
Chowdhury
Director General, Directorate of
Social Services
MOSW
Dhaka, Bangladesh
12 Mr. Khandoker M.
Asaduzzaman
Director General, Directorate of
Primary Education
Ministry of ***
Mr. Dileep K. Das Deputy Secretary Planning and Development
Department
14 Mr. Md. Zahidul Hoque
Sardar
Project Director/ Deputy
Director, HIES Project
Bangladesh Bureau of
Statistics
Government of Bangladesh
15 Mr. Md. Shamsul Alam Project Director/ Deputy
Director, MSCW
Bangladesh Bureau of
Statistics
Government of Bangladesh
16 Mr. Mosharraf Hossain Country Director ADD
Dhaka, Bangladesh
17 Mr. Samir Ranjan Nath Senior Research Fellow,
Research & Evaluation Division
BRAC
Dhaka, Bangladesh
7
NO. NAME TITLE CONTACT
18 Ms. Mehnaz Rabbani Research Fellow II, Research &
Eval. Division
BRAC
Dhaka, Bangladesh
19 Mr. Md. Anwar
Hossain
Project Director, BBS Bangladesh Bureau of
Statistics
Government of Bangladesh
20 Dr. Khondaker
Showkat Hossain
Joint Secretary Ministry of Establishment
Government of Bangladesh
Pakistan
21 Mr. Muhammad Arshad Deputy Chief, Social Welfare
Section, Plan. & Dev. Division
Ministry of Planning and
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
Yaldaram
Section Officer Economic Affairs Division
Government of Pakistan
25 Mr. Kamran Akbar Chief Operations Officer Pakistan Poverty Alleviation
Fund
Islamabad, Pakistan
26 Mr. Khalid Naeem Director General, Directorate
General of Special Education
MOSW
Government of Pakistan
27 Dr. Khalid Jamil
Akhtar
Department of Physical
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
Division, HQ
National Sample Survey
Organization
30 Mr. S. K. Ray
Director, NSSO (SDRD) Ministry of Statistical and
Program Implementation
31 Dr. S.K. Nath
Director General, Central
Statistical Organization CSO
Ministry of Statistical and
Program Implementation
32 Mr. R. C. Sethi
Additional Registrar General
India
Office of the Registrar
New Delhi, India
33 Ms. Anuradha Mohit
Director, National Institute for
the Visually Handicapped
Ministry of Social Justice and
Empowerment, GOI
34 Ms. Richa Sharma
Deputy Secretary, Dept. of
School Education and Literacy
Ministry of Human Resources
and Development
35 Shri R. Rangasayee
Director, Ali Yavar Jung
National Institute for the
Hearing Handicap
8
SESSION I: Introduction
9
10
11
12
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
13
SESSION 3: New Thinking on Disability Measurement
14
15
16
17
18
19
20
21
22
23
24
SESSION 4: From Census to Surveys
25
26
27
28
29
30
31
32
33
34
35
36
37
38
SESSION 5: Policy Dimensions of Disability Measurement – BRAZIL
39
40
41
42
43
44
45
46
47
48
49
SESSION 6: Good Questions/Bad Questions
50
51
52
53
54
55
SESSION 7: Developing a Matrix of Functioning
Vision (1) Hearing (1) Mobility Communication Cognition Upper Body Learning Affect Pain (5) Fatigue (5) ADLGetting along
with peopleLife activities
Participation
in society
Short Set - Single
questions (1)
Extended Set - Multiple
questions (1)
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:
NB - SEVERITY is captured in response categories
Meso environmental questions may also be non-domain specific.
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...)
(4) Macro environment - that which affects a whole country, such as policies and legislation, general societal attitudes and practices.
(3) Meso environment - the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others).
CA
PA
CIT
YP
ER
FO
RM
AN
CE
(2) Micro environment - technical and personal assistance that follows the person wherever they go (e.g. wheelchair, eye glasses, personal attendant).
(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).
Basic activity domains Complex activity domains / Participation
Survey Questionnaire Matrix
Questionnaire
Topic/Type
57
Vision (1)Hearing (1)MobilityCommunicationCognitionUpper BodyLearning Affect Pain (5) Fatigue (5) ADL
Getting
along
with
people
Life
activities
Participat
ion in
society
Short Set
- Single
questions
(1)
Extended
Set -
Multiple
questions
(1)
Use of
Assistive
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:
NB - SEVERITY is captured in response categories
Meso environmental questions may also be non-domain specific.
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
Question
naire
Topic/Ty
pe
Basic activity domains Complex activity domains /
(3) Meso environment - the environment beyond the person (e.g. transportation infrastructure, accessibility, service provision at local level, attitudes of others).
(4) Macro environment - that which affects a whole country, such as policies and legislation, general societal attitudes and practices.
CA
PAC
ITYPER
FOR
MA
NC
E
(1) Measurement is WITHOUT the use of assistive devices or other help WITH THE EXCEPTION OF VISION (glasses/lenses) and HEARING (hearing aids). These
(2) Micro environment - technical and personal assistance that follows the person wherever they go (e.g. wheelchair, eye glasses, personal attendant).
SESSION 8
59
60
61
62
63
64
65
66
67
68
SESSION 9: Training Needs
69
70
71
72
73
74
SESSION 10(A)
75
76
77
78
79
80
SESSION 10(B)
81
82
83
84
85
SESSION 11(A): Policy and Politics
Vietnam
86
87
88
89
90
91
SESSION 11(B): Policy and Politics
Brazil
92
93
94
95
96
