Measuring Disability and Monitoring the UN Convention on the Rights of Persons with Disabilities

1
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

2
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.

3
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.

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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.

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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.

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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

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UN Convention and WG Purpose Equalization of
Opportunities
Employed

• Seeks to identify all those at greater risk than
  the general population for limitations in
  participation.
• Disability used as a demographic.

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Measuring Disability

• Because of a Health problem
• Do you have difficulty seeing even if wearing
  glasses?
• Do you have difficulty hearing even if using a
  hearing aid?
• Do you have difficulty walking or climbing
  stairs?
• Do you have difficulty remembering or
  concentrating?
• Do you have difficulty with (self-care such as)
  washing all over or dressing?
• 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

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Severity within domains of functioning
At least
Core Domain 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
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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
at least 1 Domain is unable to do it 673 2.4
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Standardized Approach to Monitoring the UN
Convention

• 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.

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Population aged 15 years who never attended
school, by disability status ()
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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

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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

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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

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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