Measuring Disability and Monitoring the UN Convention on

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 9/24/2021 1

Need for National Data to Support The Convention 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. 9/24/2021 2

The Washington Group on Disability Statistics (WG) 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. 9/24/2021 3

Role of the Washington Group • • • 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. 9/24/2021 4

WG Products Useful for Monitoring 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. 9/24/2021 5

Moving from Concept to Operational Definition 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 9/24/2021 6

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. 9/24/2021 % Employed 7

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 9/24/2021 8

Severity within domains of functioning At least: Some difficulty A lot of difficulty Unable To do it Vision 4. 7 2. 6 0. 5 Hearing 3. 7 2. 3 0. 5 Mobility 5. 1 3. 8 0. 8 Remembering 2. 0 1. 5 0. 3 Self-Care 2. 0 1. 3 0. 4 Communicating 2. 1 1. 4 0. 5 Core Domain Living Conditions among People with Disabilities in Zambia (2006) 9

Severity in Population (%) Person with disability has: N % at least 1 Domain is ‘some difficulty’ 4053 14. 5 at least 2 Domains are ‘some difficulty’ 3090 11. 0 at least 1 Domain is ‘a lot of difficulty’ 2368 8. 5 673 2. 4 at least 1 Domain is ‘unable to do it’ Living Conditions among People with Disabilities in Zambia (2006) 10

Standardized Approach to Monitoring the UN Convention • By standardizing these questions it will be possible to provide comparable data crossnationally for populations living in a variety of cultures with varying economic resources; • Data can be used to assess a country’s compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention. 9/24/2021 11

Population aged 15 years + who never attended school, by disability status (%) South Africa 6 Vietnam 6 23 30 21 Tanzania 42 8 Brazil 30 10 Zambia 23 16 Uganda 42 27 Mozambique 0 5 10 15 20 Without disability 9/24/2021 25 38 30 35 40 45 With disability 12

Extended Question Sets 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 9/24/2021 13

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 9/24/2021 14

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 9/24/2021 15

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 9/24/2021 16