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Assessing the Need for a National Disability Survey

Federal agencies, policymakers, and researchers use information from national surveys for a variety of purposes, including monitoring the health and well-being of different groups, designing new public programs and policies, and understanding the circumstances of vulnerable populations to assess program effectiveness. People with disabilities are one of these vulnerable groups. Statistics from the 2009 American Community Survey indicate that about 36 million (12 percent) individuals age 5 and over residing in the community had disabilities. Medical improvements that extend life expectancy coupled with the aging of the baby boom generation are increasing the prevalence of disability.

Because disability can greatly affect a person’s productivity, economic well-being, and reliance on publicly funded programs and supports, public expenditures for this population represent a large proportion of spending. Policymakers need access to a variety of high-quality data on people with disabilities to better understand their needs, assess how existing programs and policies are performing, and plan for the future. The federal government collects extensive survey and administrative data pertaining to disability that federal agencies use. However, existing national disability-related survey and administrative data do not fully meet the needs of federal programs and policymakers.

This study assessed existing national disability data and developed options to address gaps in the data. The findings are based on a review of the disability-related information contained in 40 national surveys, input obtained from state and federal government stakeholders, and feedback solicited from a panel of disability data and research experts. Some of the important disability data limitations identified include: incomplete or poor quality data, small samples, a lack of longitudinal information, and a failure to capture people with disabilities because of survey sampling and administration methods.

Mathematica’s report identified numerous potential strategies for addressing disability data limitations, including:

• Improve disability measures in national surveys. The recent addition of the six American Community Survey disability questions to other federal surveys is an important step to improving disability data. Additional steps might include conducting research to better understand who is being captured by the six-question disability series, and strategically adding other disability questions to selected surveys.
  
  
• Facilitate increased use of administrative data. Such options include: strengthening efforts to link national survey and administrative data from Social Security, Medicare, and Medicaid; making greater use of Unemployment Insurance records; developing the capacity to use electronic health records; and making administrative data more accessible through improved documentation, technical assistance, and the creation of variables that are useful for research as opposed to program administration purposes.
  
  
• Improve collection of longitudinal information. Options for improving longitudinal data include collecting such information using event history calendars or diaries, asking retrospective questions about key events surrounding disability onset, and developing a longitudinal disability sample from an existing national survey.
  
  
• Enhance disability-related content in existing surveys. Disability-related content could be enhanced by adding questions to existing surveys related to: disability severity and onset, program participation and service use, barriers to independent living, work accommodations, accessible public transportation, assistive technology, disability-related costs, and the emotional and social impacts of disability.
  
  
• Augment samples in existing surveys. This could be achieved by modifying survey sample frames and methods to identify more people with disabilities in surveys, purposefully augmenting existing survey samples with individuals in the subpopulation of interest, and oversampling from identifiable groups with high disability prevalence.
  
  
• Field periodic supplements. Adding a topical supplement to an existing national survey is a useful approach when a large amount of new information is required or when there is a need to study a specific subpopulation that cannot be easily identified with existing information.
  
  
• Field a national disability survey. Another approach to addressing the disability data limitations would be to design and conduct a national survey focused specifically on disability issues and populations. Pursuing such an option might be desirable if other, more incremental options are infeasible or do not adequately address the disability data limitations considered to be of significance to federal agencies; there is a desire to collect a large amount and wide variety of data; and there is a goal to make disability issues more prominent and to establish an ongoing mechanism for periodically and consistently collecting data to assess the experiences and economic well-being of people with disabilities.

It is unlikely that any single effort would address all limitations and disability data needs. But there are many possible strategies for ameliorating current disability data limitations and there is considerable room for multiple efforts, large and small.

Publications

“Assessing the Need for a National Disability Survey” (September 2011)
“Disability Data in National Surveys” (August 2011)