Disability Statistics from Surveys and Administrative Records

Andrew J. Houtenville, Ph.D.University of New Hampshire

• 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).

Introduction

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• Motivation for looking at the population with disabilities

• Defining disability conceptually and operationally

• Survey data sources

• Administrative data sources

• Key issues

• Some suggested literature

Outline of Discussion

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• 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.

Motivation

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ParticipationRestriction

Functional Limitation

Impairment

Health Condition

Conceptual Definition: WHO/ICF Framework

Disability

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Disability

Functional Limitation

Impairment

Pathology

Primarily, government programs address “work disability”.

Conceptual Definition: Nagi Framework

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• 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).

Operational Definitions in Data Collection (1)

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Aging

• 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

Operational Definitions in Data Collection (2)

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• 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).

Operational Definitions in Data Collection (3)

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• 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.

Survey Data Sources (1)

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• 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.

Survey Data Sources (2)

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• 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.

Survey Data Sources (3)

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• 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.

Survey Data Sources (4)

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• 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.

Administrative Records (1)

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• 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.

Administrative Records (2)

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• 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.

Matched and Restricted Data

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• 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.

Key Issues (1)

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• 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.

Some Suggested Literature (1)

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• 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.

Some Suggested Literature (2)

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• 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.

Some Suggested Literature (3)

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Andrew J. Houtenville, Ph.D.Institute on DisabilityUniversity of New Hampshire10 West Edge Drive, Suite 201Durham, NH 03824(603) 862-4004Andrew.Houtenville@unh.edu

Contact Information

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