workshop on strengthening disability measurement across south … · 2016-07-16 · workshop on...

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

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,

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