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This article discusses the methodology, definitions, and types of questions used to measure disability. It explores the UN Census Recommendations, recommended definition of disability, and list of disability items. Lessons learned from the DISTAB project are also highlighted, along with new initiatives for improving disability measurement.
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Revising the United Nations Census Recommendations on Disability Margaret Mbogoni and Angela Me First meeting of the Washington Group on Disability Measurement Washington, 18-20 February 2002
Methodology Used in Measurement of Disability • Differences between studies with respect to: • Definition of disability used • The type of question used • The wording of the question • The scope of the question
Defining Disability • Not much information is available in DISTAT • Disability is defined differently by different countries
Types of Questions Used • Three broad approaches: • A generic question on presence of condition and items on activity limitations and/or participation • A generic question on presence of handicapped or disabled in household • A check list of severe impairments
United Nations Census Recommendations • Provide guidance on: • How to define the population with disabilities • How to develop the question(s) • Possible tabulations
Recommended Definition A person with disability is defined as “a person who is limited in the kind or amount of activities that he or she can do because of ongoing difficulties due to a long-term physical condition, mental condition or health problem”
Recommended List of Disability Items (1) Seeing difficulties (even with glasses, if worn); (2) Hearing difficulties (even with hearing aid, if used); (3) Speaking difficulties (talking); (4) Moving/mobility difficulties (walking, climbing stairs, standing); (5) Body movement difficulties (reaching, crouching, kneeling);
Recommended List of Disability Items (6) Gripping/holding difficulties (using fingers to grip or handle objects); (7) Learning difficulties (intellectual difficulties, retardation); (8) Behavioural difficulties (psychological, emotional problems); (9) Personal care difficulties (bathing, dressing, feeding); (10) Others (specify).
Use of the UN Census Recommendations • The approach, i.e., activity limitations • List of disability items
Revision of the Census Recommendations • Approach in terms of concept to be used • The list of types of disability
Measuring Implementation of Recommendations • Technical co-operations – workshops • Data compilation and dissemination – DISTAT • Regularize Compilation and dissemination - UN Demographic Yearbook
DISTAB Project • NCHS sponsored – began in 1999 • Members – Canada, France, the Netherlands, South Africa, USA and UNSD
Objectives of DISTAB • To test usability of ICIDH-2 beta 2 in surveys • Back coding disability categories based on the UN recommended tables on disability to the ICIDH-2 codes
Lessons Learned From DISTAB • Variability in methodology • Instruments • Terminology
Lessons Learnt • Call for harmonization of of methodology for disability measurement • Recommendation to UN to hold international meeting aimed at improving design of questions
New Initiatives • Expanded membership to include Australia and Japan • New projects • Inventory of questions on participation and environment • Quality profiles