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UN International Seminar on Measurement of Disability June, 2001

A three-day seminar that reviewed and assessed current methods for measuring disability in national statistical systems. The seminar aimed to develop recommendations and priorities to advance the measurement of disability and build a network of institutions and experts in this field.

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UN International Seminar on Measurement of Disability June, 2001

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  1. UN International Seminar on Measurement of DisabilityJune, 2001 Barbara M. Altman

  2. Three Day Seminar of Experts in Disability Measurement • Participants included: • Statisticians from designated offices in national statistical systems • Representatives of the disability community • Users of disability data • Survey methodologists • Representatives of international organizations

  3. Objectives • Review and assess current status of methods used in population-based data collection activities to measure disability in national statistical systems • Develop recommendations and priorities to advance work on measurement of disability

  4. Objectives (continued) • Contribute to building a network of institutions and experts, including producers and users of disability statistics to implement the developments in this field.

  5. Highlights of Day 1 - Policy • Rules and policy implemented via means of data collection • Counting identifies a population – what is done with that population depends on the culture, the policy and the interpretation of the data.

  6. Highlights of Day 1 - History • Not enough to successfully count people with disabilities, must monitor environmental adaptation, political and cultural environment, disease and injury patterns. • Disability statistics are not new. 1950, 33 countries surveyed disability without benefit of standardized statistical definitions, concepts or classifications.

  7. Highlights of Day 1 – View of the Disability Community • Emphasis on the input of all groups • Indicated that all aspects of the disablement process should not be viewed solely as a medical phenomena. Built environment needs rehabilitation as well as the individual

  8. Highlights of Day 1 – International Instrument Development • Comparison of patterns in prevalence rates using back coding to ICIDH-2. • Overview of data collection in Europe • Overview of data collection in less developed countries.

  9. Highlights of Day 2 -New Elements of the ICF • Discussion of the current status of methodology of measurement of participation and environment .

  10. Highlights of Day 2-Questionnaire and Survey Design Features • Review of issues of survey methodology related to screening questions, global questions, response scales, wording, self/proxy issues, mode of data collection and mechanism – census or survey

  11. Highlights of Day 3 –Special Population Groups • Children and adolescents • Elderly • Cognitive and psychological impairment • Institutional population

  12. Recommendations • The development of principles and standard forms for global indicators to be used in censuses • That emphasis be placed on improving the comparability of disability data cross-nationally while being sensitive to the cultural and resource differences encountered among different nations.

  13. Recommendations (continued) • That the International Classification of Functioning, Disability and Health (ICF) be used as the framework for measurement of disability in future work. • The development of principles for measuring the participation and environment components of the ICF since those are areas of measurement that are still in early stages of development.

  14. Recommendations (continued) • That methodological problems including issues of self vs proxy respondents, multi-point scale cut points, negative terminology and others depending on interest and time to be examined. • That attention be focussed on issues associated with measuring disability among special populations such as children, elderly, institutionalized and others.

  15. Recommendations (continued) • That additional work be done on survey instruments for health surveys and survey supplements to be used in surveys that do not focus primarily on disability – as time and interest allow. • That stakeholder and data users be included in these activities and that exchange of information and establishment of guidelines for the use of data and development of working relationships and networks among countries to further cooperation on disability data topics be stressed.

  16. Relevance to Current Meeting • Issues not simple or easily resolved • Still both conceptual and methodological problems to solve • All the work is not done – ongoing process – networks of cooperating countries and stakeholders are important to outcomes as is methodological work • Not just a measurement problem, merges with policy considerations and cultural perspectives

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