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Disability Statistics from Surveys and Administrative Records

Disability Statistics from Surveys and Administrative Records. Andrew J. Houtenville, Ph.D. University of New Hampshire. Introduction. Purpose of Presentation : provide an overview of data sources containing information on the population with disabilities.

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Disability Statistics from Surveys and Administrative Records

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  1. Disability Statistics from Surveys and Administrative Records Andrew J. Houtenville, Ph.D. University of New Hampshire

  2. Introduction • Purpose of Presentation: provide an overview of data sources containing information on the population with disabilities. • Sponsor: Rehabilitation Research and Training Center on Disability Statistics and Demographics (StatsRRTC) at Hunter College. • Funded: by the National Institute on Disability and Rehabilitation Research (NIDRR). 2

  3. Outline of Discussion • Motivation for looking at the population with disabilities • Defining disability conceptually and operationally • Survey data sources • Administrative data sources • Key issues • Some suggested literature 3

  4. Motivation • A large population: 50+ million according to the 2004 SIPP. • An at-risk population: according to the 2009 ACS • Poverty rate of people with disabilities ages 18-64 was 26.4%, compared to 11.7% for people without disabilities. • Many programs are influenced by the population, which themselves are at-risk (SSDI, SSI, Medicare, Medicaid). • Falls through the cracks of federal, state, and local programs. • No single agency. 4

  5. Conceptual Definition: WHO/ICF Framework Disability Health Condition Impairment Participation Restriction Functional Limitation 5

  6. Conceptual Definition: Nagi Framework Pathology Impairment Functional Limitation Disability Primarily, government programs address “work disability”. 6

  7. Operational Definitions in Data Collection (1) • Largely depends on the purpose of the instrument and the time/space/dollars available. • Typically avoids medical diagnoses and specific disability types (e.g., spinal cord injury). • SIPP Topical Model --- 60 or so questions • Activities of Daily Living (ADLs) --- self-care. • Instrumental ADLs (IADLs) --- self-management. • Single work limitation question, identifying those involved in many disability programs. • New ACS Six Question Sequence (6QS). Aging 7

  8. Operational Definitions in Data Collection (2) • Problem: Disconnect • With limited space on the instrument, there is a push to use functional limitations (difficulty reading newsprint even with glasses, walking a ¼ mile) or activity (difficulty going outside the home to do errands). • Many policymakers, advocates, and other stakeholders have specific conditions in mind (paralysis, Autism Spectrum Disorder 8

  9. Operational Definitions in Data Collection (3) • Key Issue when identifying specific conditions: To screen or not to screen? • Use broad activity limitation questions to screen then a lists of specific questions or conditions. • Fasts and less expensive than asking conditions specific questions to everyone. • Problem: Not everyone with a specific condition may be picked up by the screener questions! • 31% of working age individuals reporting “blind in both eyes” do not report a conditions that limits the kind or amount of work (Houtenville, 2003, JVIB). 9

  10. Survey Data Sources (1) • American Community Survey (ACS) • 2008 revision of six question sequence (6QS). • 2009 addition of veterans disability rating. • Sample living in institutions, although not available in ACS PUMS. • Massive samples allow for consistent state-level estimates by specific disabilities, including Puerto Rico. • 2008 revisions means that five-year pooled samples summary tables won’t be available before 2013. 10

  11. Survey Data Sources (2) • Survey of Income and Program Participation (SIPP) • CORE has basic work limitation question and questions about sources of disability-related income. • Topical Model on Functional Limitation and Disability has 60+ questions on disability, addressing • Need for assistance, use of assistive device, ADLs/IADLs, mental functioning, 30 specific conditions (through comprehensive screening) • Child and adult versions. • Source of the 50+ million estimate and previous 54 million estimate. • Problem: No plan to continue TM after 2010 panel. 11

  12. Survey Data Sources (3) • Current Population Survey (CPS) • Incoming rotations of the CPS Basic Monthly Survey has the ACS 6QS starting in June 2008. • Annual Social and Economic Supplement (ASEC) has a work limitation question and questions about sources of disability-related income (dating back to 1981). • Planning a disability supplement (CPS-DS) – still in the planning phase, compiling potential questions. 12

  13. Survey Data Sources (4) • Behavioral Risk Factor Surveillance Survey (BRFSS) • Major shortcoming = only two questions used to identify the population with disabilities. • Benefit = state-level risky health behavior. • National Health Interview Survey (NHIS) • 30+ questions related to function and disability, including, mental health related questions (Kessler Index). • 1983-96 NHIS has a check list of unscreened “impairments,” but limited sample size. 13

  14. Administrative Records (1) • Administrative Data • Large sample sizes – possible to address low incidence conditions. • Limited standard operating procedures for data collection. • Poor documentation (uncertainty of variable coding). • Uncertain file structure. 14

  15. Administrative Records (2) • Rehabilitation Services Administration (RSA) • Data on state vocational rehabilitation clients with closed cases. • Publicly available, but a relatively small program. • Social Security Administration (SSA) • Data on SSDI/SSI applicants and beneficiaries. • Possible to get earnings records. • Difficulty to access. • Equal Employment Opportunity Comm. (EEOC) • Charge Data = data on all allegations. • Missing data files and inconsistent coding. 15

  16. Matched and Restricted Data • Matched SSA-Survey Records • NHIS, SIPP, CPS, ACS, perhaps others. • Data on survey respondents before and after survey (particularly interesting with earnings files) • Match rate is sometimes low. • Restricted Access • Census RDCs (http://lehd.did.census.gov/led/research/rdc.html) • NCHS RDC (http://www.cdc.gov/rdc/) • Matched Administrative Records • RSA/SSA, Medicaid/SSA --- very hard to get a hold of --- involves agency lawyers. 16

  17. Key Issues (1) • Assistive Devices and Personal Assistance Services • Use of assistive devices/assistance is correlated to the severity of disability and household resources, thus it is difficult to use it as a proxy for the existence of a disability and to look at its impact on outcomes (like employment). • Proxy Responses • There is a general concern that the use of a proxy respondent reduces the accuracy of responses more so than for people without disabilities --- suggest running analyzes with and without proxy responses. • Low Incidence Disabilities • Many of the conditions of high interest (such as Autism Spectrum Disorder), even if in the data, have very small sample sizes. 17

  18. Some Suggested Literature (1) • Statistical Abstract: Houtenville, A. (2010). 2010 Annual Disability Statistics Compendium. Rehabilitation Research and Training Center on Disability Statistics and Demographics, Hunter College, New York, NY. Retrieved December 1, 2010, from www.DisabilityCompendium.org. • Overview of Data Sources & Improvements: Houtenville, A., Stapleton, D., Weathers, R., & Burkhauser, R. (Eds.). (2009). Counting working-age people with disabilities: What current data tell us and options for improvement. Kalamazoo, MI: W.E. UpJohn Institute for Employment Research. 18

  19. Some Suggested Literature (2) • Issues in Survey Data Collection: Markesich, J. (2008). Surveying persons with disabilities: A source guide. Washington, DC: Mathematical Policy Research, Inc. Retrieved February 11, 2011, from http://www.mathematica-mpr.com/publications/pdfs/surveypersons_ver2.pdf. • Policy Issues: Government Accountability Office. (2008). More strategic coordination could help overcome challenges to needed transformation. Washington, DC: GAO-08-635. Stapleton, D. & Burkhauser, R. (Eds.). (2003). The Decline in Employment of People with Disabilities: A Policy Puzzle, Kalamazoo, MI: W.E. UpJohn Institute for Employment Research. 19

  20. Some Suggested Literature (3) • Defining Disability: Nagi, S. 1965. “Some Conceptual Issues in Disability and Rehabilitation,” in M.B. Sussman, ed., Sociology and Rehabilitation, Washington, DC: American Sociological Association. Fields, M. & Jette, A. (Eds.). (2007). The Future of Disability in America. Washington, DC: National Academies Press. - aka, IOM Report. 20

  21. Contact Information Andrew J. Houtenville, Ph.D. Institute on Disability University of New Hampshire 10 West Edge Drive, Suite 201 Durham, NH 03824 (603) 862-4004 Andrew.Houtenville@unh.edu 21

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