Overview of UN’s work on disability

by Lene Mikkelsen, Chief of Statistics Development, UNESCAP

Outline of presentation

• Major catalysts behind the development of disability statistics
• Overview of UN’s standards on disability statistics
• Highlights of disability statistics collection in the A-P region

Global initiatives

• 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)

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

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

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)

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

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

Data comparability issues

Data comparability issues

No universal definition of disability

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

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

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

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

Sample questions

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

Or

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

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)

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

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

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

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

Highlights of disability statistics in the A-P region

Based on:

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

Sources of data on disability

Data collections worldwide

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

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 )

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?

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)

Questions used in surveys to identify persons with disabilities

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

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.

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

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

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?