C510 alarcos cieza et al – model disability survey

WHO

Global Disability Action Plan 2014-2021

Better Health for all people with Disability

Alarcos Cieza

Disability and Rehabilitation (DAR)

2Low ExtremeDisability

Distribution of the world population on the

disability continuum

1,000,000,000

15% of the world population

3

People in the higher levels of the continuum

have POORER health and..

• higher rates of poverty

• lower levels of education

• lower rates of employment

5

W

3

HY ?

• Physical

• Social and attitudinal

• System level

when accessing health care and programs

7

Environmental barriers

WHO global

disability

action plan

2014-2021

http://www.who.int/disabilities/acti

onplan/en/

3

http://www.who.int/disabilities/worl

d_report/2011/en/

To remove barriers and

improve access to health

services and programmes

9

1

10Disability

Distribution of needsH

ealt

h c

are

nee

ds

Low Extreme

To strengthen and extend

rehabilitation, habilitation,

assistive technology, assistance

and support services and CBR

12

To strengthen and extend

rehabilitation, habilitation,

assistive technology, assistance

and support services and CBR

13

2

14Low ExtremeDisability

Distribution of the world population on the

disability continuum

“… on an equal basis with

others”

3

To strengthen collection of

relevant and international

comparable data on disability and

support research on disability and

related services

16

3

WHO global disability

action plan 2014-2021

3

Action ?

Actors ?

• Member states

• National and international partners including

organizations of people with disabilities

• WHO

18

Who is responsible for action ?

WHO global disability

action plan 2014-2021

3

Actions ?

http://www.who.int/disabilities/actionplan/en/

20

Objective 1

• Provide technical support; develop guidelines on disability-

inclusive health systems strengthening to help to achieve

universal coverage

• Support identification of barriers to particular services through

technical assistance for collecting disability-disaggregated data on

use of services

• Design model curricula on disability for personnel working in

health care, rehabilitation and habilitation

21

Examples of actions

Objective 2

• Provide technical guidance; finalize and disseminate evidence-

based guidelines on health-related rehabilitation

• Develop relevant tools and training packages to develop and

strengthen habilitation and rehabilitation services including for

children

• Maintain and strengthen partnerships with organizations and

associations representing persons with disabilities and their

family members and/or caregivers

22

Examples of actions

23

WHO short-term priorities

24

25

WHO short-term priorities

Objective 3

• Reform national data collection systems based on the ICF

• Strengthen and build human resource capacity in the area of

disability research in a range of disciplines

• Improve disability data collection through the development and

application of a standardized model disability survey

26

Examples of actions

Dis

abli

ng b

arr

iers

–B

reak

to i

ncl

ud

e

Model Disability Survey (MDS)

28

5000

oranges1,500 Kg

29

Difficulties in … 1 2 3 4

seeing

hearing

walking

memory

self-care

communicating

“Disabled”

Difficulties in … 1 2 3 4

seeing

hearing

walking

memory

self-care

communicating

30Low ExtremeDisability

Distribution of the world population on the

disability continuum

The MDS …

1. collects data of all persons along

the disability continuum

2. measures disability

3.

4.

31

The International Classification of

Functioning, Disability and Health

The MDS …

1. collects data of all persons along the

disability continuum

2. measures disability

3. focuses on performance but also

capturing capacity

4. captures in detail environmental

factors33

Development process

34

Phase One: Mapping the situation

A. Review of existing surveys & construction of the

web-based repository

B. Statistical analysis with microdata

C. Preliminary drafting of the MDS

D. Expert Consensus

Phase Two: Finalization of the MDS

A. Cognitive testing

B. Pilot study

Phase Three: Implementation of National Disability

Surveys

December 2012

August 2014

AFRO

N=16

EURO

N=109

EMRO

N=2

AMRO

N=22

SEARO

N=7

WPRO

N=23

Identification of 179 health and disability surveys

Online repository

36

http://disabilitysurvey.checkdesign.de/

Section

3000 Functioning

Section

5000Health Conditions

& Capacity

Section

4000 Environmental

factors

Section

1000 Socio-

demographic

Characteristics

Section

6000Health Care

Utilisation

Section

2000 Work History and

Benefits

Section

7000Well-Being

1. Mobility

2. Hand and arm use

3. Self-care

4. Seeing

5. Hearing

6. Pain

7. Energy and drive

8. Breathing

9. Affect (depression and

anxiety)

INDIVIDUAL QUESTIONNAIRE

Section 3000: Functioning

10. Interpersonal relationships

11. Handling stress

12. Communication

13. Cognition

14. Household tasks

15. Community and

citizenship participation

16. Caring for others

17. Work and schooling

Development process

42

Phase One: Mapping the situation

A. Review of existing surveys & construction of the

web-based repository

B. Statistical analysis with microdata

C. Preliminary drafting of the MDS

D. Expert Consensus

Phase Two: Finalization of the MDS

A. Cognitive testing

B. Pilot study

Phase Three: Implementation of National Disability

Surveys

December 2012

August 2014

Institutions

• National Center for Health Statistics, US

• Institute for Survey Research, University of Michigan, US

• Statistics Norway, Norway

Countries

• US, Cambodia, Malawi, Nepal and China

43

Cognitive testing

Cambodia, Malawi, Nepal, Oman and Brazil (Sao

Paulo)

44

Pilot Studies

Chile, Cambodia, Philippines and Sri Lanka

National Surveys

Alarcos Cieza

ciezaa@who.int

45

Further information