1. 2/8/2014 Measuring Disability and Monitoring the UN Convention on the Rights of Persons with Disabilities… … the work of the Washington Group on Disability Statistics Jennifer Madans National Center for Health Statistics/ Washington Group on Disability Statistics 1

2. National Data on population with disabilities is necessary to both implement and monitor The Convention. The International Classification of Functioning, Disability and Health (ICF) provides a commonly accepted model to support national data collection. The Washington Group work seeks to provide internationally comparable data based on the ICF Model to fulfill the monitoring function. 2/8/2014 Need for National Data to Support The Convention 2

3. June of 2001-- the UN International Seminar on the Measurement of Disability, based on a broad consensus on need for population based measures of disability, recommended the development of principles and standard forms for global indicators of disability to be used in censuses. The Washington Group, made up of representatives from national statistical offices, has pursued these goals over the past 10 years with recognized success. 2/8/2014 The Washington Group on Disability Statistics (WG) 3

4. Foster international cooperation in the area of health and disability statistics Untangle the web of confusing and conflicting disability estimates Develop a short set of general disability measures Develop extended set/s of items to measure disability on population surveys Address methodological issues associated with disability measurement Produce internationally tested measures for use to monitor status of disabled populations. Role of the Washington Group 2/8/20144

5. Short Set of Questions – six questions recommended for Censuses. (Recommended for use in all national censuses in the UN Principles and Recommendations for Population and Housing Censuses) Extended questions sets for national surveys, currently under development and testing. First set will provide broader survey measures of this population. 2/8/2014 WG Products Useful for Monitoring 5

6. The Definitional Paradox There is no single operational definition of disability Different operational definitions lead to different estimates The question you are trying to answer (the purpose) will determine which definition to use Need to understand the choices that are being made when choosing a definition 2/8/2014 Moving from Concept to Operational Definition 6

7. UN Convention and WG Purpose: Equalization of Opportunities Seeks to identify all those at greater risk than the general population for limitations in participation. Disability used as a demographic. 2/8/2014 % Employed 7

8. 2/8/20148 Measuring Disability Because of a Health problem: 1)Do you have difficulty seeing even if wearing glasses? 2)Do you have difficulty hearing even if using a hearing aid? 3)Do you have difficulty walking or climbing stairs? 4)Do you have difficulty remembering or concentrating? 5)Do you have difficulty with (self-care such as) washing all over or dressing? 6)Using your usual (customary) language, do you have difficulty communicating (for example understanding or being understood by others)? Response categories: No - no difficulty; Yes - some difficulty; Yes - a lot of difficulty; Cannot do at all

9. Living Conditions among People with Disabilities in Zambia (2006) 9 Severity within domains of functioning Core Domain Some difficulty A lot of difficulty Unable To do it Vision4.72.60.5 Hearing3.72.30.5 Mobility5.13.80.8 Remembering2.01.50.3 Self-Care2.01.30.4 Communicating2.11.40.5 At least:

10. Liv ing Conditions among People with Disabilities in Zambia (2006) Severity in Population (%) Person with disability has:N% at least 1 Domain is some difficulty405314.5 at least 2 Domains are some difficulty309011.0 at least 1 Domain is a lot of difficulty23688.5 at least 1 Domain is unable to do it6732.4 10

11. By standardizing these questions it will be possible to provide comparable data cross- nationally for populations living in a variety of cultures with varying economic resources; Data can be used to assess a countrys compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention. 2/8/2014 Standardized Approach to Monitoring the UN Convention 11

12. Population aged 15 years + who never attended school, by disability status (%) 2/8/201412

13. Having successfully developed and tested the short set of questions for censuses, the WG moved on to extended sets for national surveys. First set of extended questions on functioning Expands the number of domains covered Provides more in-depth information on each domain Begins to construct the links between functioning in core domains without accommodation, functioning with accommodation, environment and participation 2/8/2014 Extended Question Sets 13

14. WG Short and Extended Set Testing History Both question sets have undergone extensive cognitive and field testing in multiple countries throughout the world. To improve the comparability of the tests themselves, a new cognitive testing protocol was developed and used 2/8/201414

15. Next Steps: Cognitive and field testing of eventual new extended sets on environmental factors and child disability (jointly with UNICEF). Facilitate implementation of tested question sets within NSO ongoing data collection programs Facilitate the analysis of resulting data 2/8/201415

16. 2/8/201416 Meeting Products & Information Executive summary of last ten WG meetings posted on the Washington Group website along with presentations & papers from the meetings: http://www.cdc.gov/nchs/washington_group.htm Publication of key papers in a special issue of Research in Social Science and Disability