Federal agencies, policy makers, and researchers use information from national surveys for a variety of purposes, including monitoring the health and well-being of the population, designing new public programs and policies, and understanding the circumstances of vulnerable populations in order to assess the effectiveness of programs. One such vulnerable population is people with disabilities. A large and growing share of the United States population is affected by disability, and disability prevalence increases considerably as people age. Statistics from the 2009 American Community Survey (ACS) indicate that about 36 million (12 percent) of individuals age 5 and over residing in the community had disabilities. Disability prevalence ranges from 5.2 percent among children ages 5-17 to 37.4 percent among adults age 65 and over (Census Bureau 2011). With medical improvements that extend life expectancy and the aging of the baby boom generation, the prevalence of disability is increasing and will continue to rise for the foreseeable future.
Because disability can greatly affect a persons productivity, economic well-being, and reliance on publicly funded programs and supports, a large amount of public expenditures is devoted to this population. Recent estimates indicate that in fiscal year 2008 the Federal Government spent approximately $357 billion on a wide range of programs that provide services to working-age adults with disabilities (Livermore et al. 2011a). In light of this, it is especially important for policy makers to have access to a wide variety of high-quality data on people with disabilities in order to better understand the needs of this population, 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 is used by federal agencies for a variety of purposes. However, existing national disability-related survey and administrative data are limited in their ability to meet the needs of federal programs and policy makers. Such limitations include inadequate and inconsistent measures of disability, small sample sizes or no data on particular subpopulations of interest, lack of information on specific topics, very limited longitudinal information, poor-quality survey data on program participation and service use, and lack of access to and linkages with administrative data (Livermore and She 2007). One potential response to the shortcomings of existing disability data is the fielding of a national disability survey or similar large-scale disability data collection effort. The National Health Interview Survey on Disability (NHIS-D), fielded from 1994 to 1997, represents one such effort; it is the only large-scale national disability survey data collection effort ever conducted for the United States general population.
This is the final report of a project that assesses the need for developing and fielding another national disability survey data collection effort. It presents the findings from three principal project activities designed to assess whether existing data are sufficient to answer key disability-related research questions identified by the staffs of various federal agencies, and options for addressing the unanswered questions, including the pursuit of a national disability survey. These project activities include:
- Obtaining feedback from federal agencies regarding their disability data needs and unanswered questions,
- Reviewing the disability-related information that is available in existing national surveys, and
- Obtaining ideas and feedback from experts on disability data and research regarding how to address existing limitations in national disability data.
Our summary includes a review of existing disability data collection efforts and their limitations, and discusses a wide range of potential options to address these limitations. In developing the list of options, we did not constrain them based on potential costs, feasibility, or practicality. Our goal was to document a variety of ways that disability data limitations could be addressed without making judgments about which would be most feasible or desirable. Feasibility and desirability are subjective concepts that can change quickly in response to many factors, including technology, political will, available resources, and the needs of program administrators and policy makers. Efforts that seem difficult or impractical today could become achievable in the future.
While the general purpose of the project and this report is to assess the need for a national disability survey, we do not offer conclusions or recommendations regarding whether a national disability survey is warranted and if so, what its specific nature should be. Rather, this report provides objective information intended to be a resource for the U.S. Department of Health and Human Services (HHS) and other federal agencies to inform their discussions and consideration of options for addressing their disability-related data needs, including the decision whether to conduct a new national disability survey.