Overview of UN's work on disability: First Workshop for Improving Disability Statistics and Measurement, Bangkok, 24-28 May 2004

The International Year of Disabled Persons (1981)
The World Programme of Action concerning Disabled Persons (1982)
The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993)

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Regional initiatives

1993-2002 the Asian and Pacific Decade of Disabled Persons
Biwako Millennium Framework (2002)
2003-2012 the Asian and Pacific Decade of Disabled Persons
2004-2005 UNESCAP Project on Improvement of Disability Statistics

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UN’s work on disability statistics

Standard setting and methodological guidelines
Promote and improve the collection of disability statistics
Improve the dissemination and use of disability data

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UN disability statistics publications

Manual for the Development of Statistical Information for Disability Programmes and Policies (1996)
Principles and Recommendations for Population and Housing Censuses, Rev. 1 (1998)
Guidelines and Principles for the Development of Disability Statistics (2001)

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Investigating disability in a population census

19 counties in 1970 census round
45 counties in 1980 census round
80 counties in 1990 census round
? Countries in 2000 census round

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UN DISTAT-2

global database with statistics, indicators and metadata
statistics and indicators are by sex, age, type of disability and socio-economic characteristics
metadata on type of survey, coverage and disability questions
web address: http:/www.un.org/Depts/unsd/disability

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Data comparability issues

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Data comparability issues

No universal definition of disability

Conceptual issues (definitional differences)
Measurement issues (different questions and populations)

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Census recommendations for 2000 round

UN has prepared Recommendations for Population and Housing Censuses since 1950s
Contains advice concerning:
- Operational aspects
- Definitions and specifications for topics to be investigated
- Census products and data utilization
2000 first time that disability is included among the recommended topics

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Why collect disability data in a census?

Only reliable source on frequency, distribution at subnational levels
Contain information on the socio-economic characteristics
Allow comparison of disabled and non-disabled
Provide baseline data for monitoring and evaluation of national programmes
To establish a more efficient sampling frame for a disability survey

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Guidelines for disability questions for a census

Use internationally recognized standards
Do not ask a generic question such as: Is there any person who is disabled in the household?
Ask instead a question that lists specific categories

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Sample questions

Is there anyone in this household who has difficulties with ….
Seeing*; hearing*; speaking; moving; learning; other; etc

Does a health problem cause you to have difficulty with ….
Everyday activities; communicating, mixing or socializing with others?

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Other guidelines concerning questions

use qualifiers (none, mild, severe)
ask duration or “has lasted or is expected to last”
cause of disability (infectious; congenital; disease; injury; other; unknown)

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Other guidelines concerning questions (cont.)

In the preparatory stage:

consult users and persons with disabilities
questions should be clear, concise and unambiguous and tested beforehand
use appropriate language that does not offend or embarrass respondents

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Limitations of censuses?

Limited number of questions
Tend to miss mild and moderate disability
Particularly among children and elderly
It is not possible to get data as frequently as needed

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Guidelines concerning tabulations

Always cross-classify by sex and age
Always compare to populations without disabilities
Socio-economic profile, i.e. education, employment status, marital status, living arrangements, etc.
Urban versus rural

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Further development on Disability Measurement

Washington City Group mandate:

To get agreement on a small set of global measures of disability for use in censuses and surveys within the ICF framework
2002-2004 saw three meetings
September 2004 next meeting in Bangkok

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Highlights of disability statistics in the A-P region

Based on:

DISTAT information
Information collected for the 2003 meeting
Information provided for this meeting

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Sources of data on disability

Data collections worldwide

Region	Total	Census	Survey
Africa	37	28	9
Asia	32	20	12
Caribbean	7	7	0
Developed countries	25	5	20
South America	12	8	4
Total	113	68	45

Source: UNSD at United Nations Workshop on Disability Statistics for Africa, 10 – 14 September 2001, Kampala, Uganda

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ESCAP disability survey of sources 2003

15 countries in Asia and the Pacific (Afghanistan, Australia, Cambodia, China, Fiji, India, Indonesia, Iran, Japan, Kyrgyzstan, Malaysia, New Zealand, Philippines, Thailand and Viet Nam )

Source	No. of countries	Periodicty	Use of international standards	No. of disability questions
Census	6	10 years	2	2 (on average)
Survey	13	Ad hoc Annual Quarterly	4 had used selected international standards	1-70
Admin. register	12	Ad hoc/ Continous/ Annual	1	---

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Conclusions regarding censuses

A couple of questions in the census
- identification of the disabled persons, type of disability, cause of disability (sometimes)
Response rate: Near 100%
Type of questions asked mostly impairment based:
- Does ______ have any physical or mental disability?
- What type of disability does ______ have?

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Conclusions regarding sample surveys

Most surveys did not focus on disability
Sample size: - from 250 households in Kyrgyzstan to 369,816 households (1,579,314 persons in China)
Response rate: Typical 70-100%
Type of information mostly collected:
- disabled persons/households
- disability type, cause and severity of disability
- basic demographic information (sometimes)
- educational level, employment (sometimes)
- income and disability pensions (sometimes)
- use of support services, special equipments
- unmet needs and carers (rarely)

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Questions used in surveys to identify persons with disabilities

Australia 1993 Survey (p.r. 18 %)
Bangladesh 1982 Survey (p.r. 0.8 %)

Australia: “Is there anyone in the household who has any loss of sight? Does anyone have loss of hearing? Does anyone have a loss of speech? etc.

Bangladesh: “Is there any blind/crippled/ deaf and dumb/mad person in this household?

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Conclusions about administrative registers

Most countries have admin. registers
Frequency: Ad hoc, infrequently, annually
Coverage: incomplete, different populations
Type of information: limited scope and sharper focus
- Disability pensions; protected employment; students receiving special education; people cared for in public institutions; people receiving social services aimed at disabled, etc.

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Prevalence of disabled persen (%)

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Diagnosis of the region’s disability statistics (1)

Most use measurement instruments that only covers the most severely disabled
Most use an impairment-based approach
Most use a generic question to identify PWD
Information on disability in most countries is partial and fragmented, little practical value to policy makers
Lack of a common conceptual framework means that data are not comparable across or within countries

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Diagnosis of the region’s disability statistics (2)

International standards and guidelines are not used in design and wording of disability questions
The disability model used is focused on a few severe impairment categories
Data are not available/compiled to allow comparison of disabled and non-disabled populations

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Important questions looking for answers

How many people with disabilities are without access to special equipment, aid or support services?
What percentage of disabled children are in school compared to non-disabled?
What percentage of adults with disabilities are economically active, married, have families, etc. compared to non-disabled?
How many people with disabilities are being cared for by a family member?