c510 alarcos cieza et al – model disability survey

41
WHO Global Disability Action Plan 2014-2021 Better Health for all people with Disability Alarcos Cieza Disability and Rehabilitation (DAR)

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Page 1: 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)

Page 2: C510 alarcos cieza et al – model disability survey

2Low ExtremeDisability

Distribution of the world population on the

disability continuum

Page 3: C510 alarcos cieza et al – model disability survey

1,000,000,000

15% of the world population

3

Page 4: C510 alarcos cieza et al – model disability survey

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

Page 5: C510 alarcos cieza et al – model disability survey

W

3

HY ?

Page 6: C510 alarcos cieza et al – model disability survey

• Physical

• Social and attitudinal

• System level

when accessing health care and programs

7

Environmental barriers

Page 7: C510 alarcos cieza et al – model disability survey

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/

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To remove barriers and

improve access to health

services and programmes

9

1

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10Disability

Distribution of needsH

ealt

h c

are

nee

ds

Low Extreme

Page 10: C510 alarcos cieza et al – model disability survey

To strengthen and extend

rehabilitation, habilitation,

assistive technology, assistance

and support services and CBR

12

Page 11: C510 alarcos cieza et al – model disability survey

To strengthen and extend

rehabilitation, habilitation,

assistive technology, assistance

and support services and CBR

13

2

Page 12: C510 alarcos cieza et al – model disability survey

14Low ExtremeDisability

Distribution of the world population on the

disability continuum

Page 13: C510 alarcos cieza et al – model disability survey

“… on an equal basis with

others”

3

Page 14: C510 alarcos cieza et al – model disability survey

To strengthen collection of

relevant and international

comparable data on disability and

support research on disability and

related services

16

3

Page 15: C510 alarcos cieza et al – model disability survey

WHO global disability

action plan 2014-2021

3

Action ?

Actors ?

Page 16: C510 alarcos cieza et al – model disability survey

• Member states

• National and international partners including

organizations of people with disabilities

• WHO

18

Who is responsible for action ?

Page 17: C510 alarcos cieza et al – model disability survey

WHO global disability

action plan 2014-2021

3

Actions ?

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

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20

Page 19: C510 alarcos cieza et al – model disability survey

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

Page 20: C510 alarcos cieza et al – model disability survey

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

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23

WHO short-term priorities

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WHO short-term priorities

Page 24: C510 alarcos cieza et al – model disability survey

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

Page 25: C510 alarcos cieza et al – model disability survey

Dis

abli

ng b

arr

iers

–B

reak

to i

ncl

ud

e

Model Disability Survey (MDS)

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28

5000

oranges1,500 Kg

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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

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30Low ExtremeDisability

Distribution of the world population on the

disability continuum

Page 29: C510 alarcos cieza et al – model disability survey

The MDS …

1. collects data of all persons along

the disability continuum

2. measures disability

3.

4.

31

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The International Classification of

Functioning, Disability and Health

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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

Page 32: C510 alarcos cieza et al – model disability survey

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

Page 33: C510 alarcos cieza et al – model disability survey

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

Page 34: C510 alarcos cieza et al – model disability survey

Online repository

36

http://disabilitysurvey.checkdesign.de/

Page 35: C510 alarcos cieza et al – model disability survey

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

Page 36: C510 alarcos cieza et al – model disability survey

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

Page 37: C510 alarcos cieza et al – model disability survey
Page 38: C510 alarcos cieza et al – model disability survey

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

Page 39: C510 alarcos cieza et al – model disability survey

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

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Cognitive testing

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Cambodia, Malawi, Nepal, Oman and Brazil (Sao

Paulo)

44

Pilot Studies

Chile, Cambodia, Philippines and Sri Lanka

National Surveys

Page 41: C510 alarcos cieza et al – model disability survey

Alarcos Cieza

[email protected]

45

Further information