A substantial amount of survey and administrative data relating to disability is currently collected in the United States. The 40 national surveys and associated administrative data sources we reviewed contain a wealth of information about people with disabilities of all ages covering a wide range of topics. Further, in recent years significant progress has been made in improving the nature of the disability-related data collected. A standard set of disability measures has been added to the ACS, AHS, and CPS, and there are current plans to include these measures in all federal surveys. Linkages between national health surveys and a variety of administrative data sources have been undertaken and are made widely accessible to potential data users through the NCHS restricted data center, and plans for the re-designed SIPP call for increased use of administrative data sources. Several new efforts are underway, including a disability supplement to the CPS, a new longitudinal study of youth, additional disability questions added to the 2011 NHIS, and a new longitudinal study of Medicare beneficiaries over age 65.
Despite the substantial progress in recent years, important limitations to existing disability data persist. These include inadequate disability measures in many surveys, particularly as they relate to behavioral, emotional, and intellectual disabilities and disability severity; small sample sizes of existing surveys that limit the ability to analyze subgroups, such as program participants or people experiencing disability-related transitions; access to administrative data hampered by privacy, technical, and resource issues; lack of coverage of certain disability-related topic areas related to the characteristics of disability and its onset, program participation, community supports and services needed and used by people with disabilities, and disability-related expenditures; and lack of longitudinal information to characterize the dynamics of disability across the life cycle, and in particular, during transitions experienced by the working-age population with disabilities.
In this report, we have provided numerous ideas for addressing the disability data limitations identified by federal and state agencies. Although they were presented in terms of what might be achieved by means of incremental changes to existing data collection efforts versus conducting a periodic national disability survey, these general strategies should not be viewed as mutually exclusive alternatives. Many of the incremental options described warrant pursuit whether or not a national disability survey is developed. Although final decisions regarding which specific disability data collection efforts to pursue will be determined by federal policy makers and program administrators, here we offer some potential next steps and in doing so, highlight efforts that seem to be of highest priority.