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Measuring Disability in Censuses and Household Surveys

Measuring Disability in Censuses and Household Surveys. Mitchell Loeb National Center for Health Statistics, USA for the Washington Group on Disability Statistics. This presentation will cover:.

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Measuring Disability in Censuses and Household Surveys

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  1. Measuring Disability in Censuses and Household Surveys Mitchell Loeb National Center for Health Statistics, USA for the Washington Group on Disability Statistics

  2. This presentation will cover: • Disability definition and the International Classification of Functioning, Disability and Health – ICF • Disability measurement and the Washington Group on Disability Statistics – WG • An example of disability prevalence measurement from a recent Zambian survey

  3. Our understanding of disability has changed: from: a medical definition – based on a medical condition as an individual pathology to: a concept based on the consequences of diseases; on functional capacity and social participation

  4. Moving from Concept to Definition to Measurement: The Conceptual Model ICF selected as the conceptual model: • Common point of reference • Common vocabulary • Does not provide an operational definition or a way to measure the concepts

  5. Health Condition (disorder/disease) Participation (Restriction) Body Function & Structure (Impairment) Activities (Limitation) Personal Factors Environmental Factors The ICF Model Source: World Health Organization, 2001

  6. Moving from Concept to Definition to Measurement: 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

  7. Purpose of Data Collection 3 major classes of purposes at aggregate level • Service Provision • Monitoring functioning in the population • Assess equalization of opportunities 2 criteria for selection of a purpose • Relevance—particularly for policy makers and program officials • Feasibility

  8. Purpose: Equalization of opportunities • Seeks to identify all those at greater risk than the general population of experiencing restrictions in social participation, for example in employment, education or civic life • Disability as a demographic

  9. Moving from Concept to Definition to Measurement: Measurement of equalization of opportunities • Locate the definition of disability at the most basic level of activity/participation in core domains • Defined as the ability or inability to carry out basic actions at the level of the whole person (i.e. walking, climbing stairs, lifting packages, seeing a friend across the room) • Connection between ‘disability’ and participation can be made during data analysis

  10. Health Condition (disorder/disease) Participation (Restriction) Body Function & Structure (Impairment) Personal Factors Environmental Factors Locating Risk in the ICF Model ? ACTIVITY Source: World Health Organization, 2001

  11. Mobility Walking Climbing stairs Bending or stooping Reaching or lifting Using hands Sensory Seeing Hearing Communicating Understanding Speaking Cognitive functions Learning Remembering Making decisions Concentrating Emotional functioning Interpersonal interactions Psychological well-being Possible question options

  12. Criteria for inclusion of domains • Cross cultural comparability • Suitability for self-report • Parsimonious • Validity across various methodological modes

  13. WG short set of questions for censuses: 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

  14. What do we end up with? • Identify persons with similar types and degree of limitations in basic actions regardless of nationality or culture • Represent the majority (but not all) persons with limitations in basic actions in any one nation • Represent commonly occurring limitations in domains that can be captured in the Census context

  15. Intended use of data • Compare levels of participation in employment, education, or family/social life for those with disability versus those without disability to see if persons with disability have achieved social inclusion • Monitor effectiveness of programs / policies to promote full participation can be monitored • Monitor prevalence trends for persons with limitations in specific basic activity domains

  16. Limitations • One set of measures will not satisfy the multiple needs for disability data • Excluded populations: • Very young children • Institutionalized population • Homeless • Floating populations • It is not our purpose to: • identify every person with a disability within every community • replicate a population evaluated across a wider range of domains that would be possible with other forms of data collection

  17. An Example: Disability prevalence in Zambian: Data collected in a national household survey, 2006

  18. The Disablement Process ca.1980 Disease or Impairment(s) Disability(ies) Handicap(s) disorderBody level Personal level Societal level

  19. Measuring Disability: 1 Measurement based on impairments: the ”What’s wrong with you?” approach. Questions used to identify persons with disabilities:Zambia Census 1990 1. Are you disabled in any way? Yes/No 2. What is your disability? Blind Yes/No Deaf/dumb Yes/No Crippled Yes/No Mentally retarded Yes/No Disability prevalence = 0.9%

  20. Disability prevalence

  21. Global disability prevalence rates* * Sources and methodologies are country specific

  22. Measuring Disability: 2 Zambia Census 2000 “…disability refers to a person who is limited in the kind or amount of activities that he or she can do because of on-going difficulties due to long term physical, mental or health problems.”

  23. Measuring Disability: 2 Questions used to identify persons with disabilities:Zambia Census 2000 • Are you disabled in any way? Yes/No • What is your disability? Blind Yes/No Partially sighted Yes/No Deaf/dumb Yes/No Hard of hearing Yes/No Mentally ill Yes/No Ex-Mental Yes/No Mentally retarded Yes/No Physically handicapped Yes/No Disability prevalence = 2.7%

  24. Health Condition (disorder/disease) Participation (Restriction) Body Function & Structure (Impairment) Activities (Limitation) Personal Factors Environmental Factors The ICF Model - 2001 Source: World Health Organization, 2001

  25. Measuring Disability: 3 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

  26. Measuring Disability: 3 The survey of Living Conditions among People with Disabilities in Zambia (2006) used the short set of 6 WG questions. Response categories: No difficulty, Some difficulty, A lot of difficulty, Unable to do it At least two of six Domains have at least some difficulty • prevalence 13.4%

  27. Sample prevalence (%) by domain and degree of difficulty At least:

  28. Overall Sample prevalence (%)

  29. Work on Extended Measures • The WG is developing an extended set of questions that: • goes into greater depth on the same 6 domains covered by the short set of questions, and • includes additional domains of functioning such as learning, affect, pain and fatigue, • includes questions about age at onset and impact of the difficulty, • is currently being cognitively tested in preparation for subsequent field testing.

  30. Mobility Severity

  31. Anxiety Severity

  32. Pain Severity

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

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