The federal government collects extensive survey and administrative data pertaining to disability. In a real sense, this extensive effort comprises a national disability data system, although it is not recognized or managed as such. From a variety of perspectives, however, the national disability data collected are limited in their ability to meet the needs of federal programs, policymakers, and disability researchers. In this paper, we document the key components of the national disability data system and identify major gaps in the data that are currently collected. The findings are based on information collected via interviews conducted with a wide range of disability data users, and on information collected from a review of over 40 national surveys.
Our findings indicate that, although a large amount of information about people with disabilities is collected through national survey and program administrative data, the information is limited by a variety of factors: the manner in which disability is measured; small sample sizes; the inability to identify certain subpopulations; infrequent data collection; predominantly cross-sectional, as opposed to longitudinal perspectives; and restricted access to administrative data. In addition, many important topics are not adequately covered for people with disabilities in national surveys, such as time use and expenditures, transportation issues, employment services and supports, community participation, living arrangements, and the characteristics of disability onset and progression.
Disability is both an important determinant and consequence of the health, productivity, and well-being of the population. Our findings suggest that the national surveys designed to monitor the U.S. population could be improved in many ways to better identify people with disabilities and provide information about their needs and well-being. Finding ways to more effectively collect data on people with disabilities seems especially important as people with disabilities represent a large and growing share of the U.S. population, and an even larger share of individuals who rely on public programs. High-quality and timely information on disability-related issues is essential to understanding the needs of the population, to assessing how existing programs and policies are performing, and to planning for the future needs of our aging population.