Assessing the Need for a National Disability Survey: Final Report. A. Increase Awareness of Existing Data


The perception of several TAG members was that a lot of good disability-related data exists, but that knowledge and use of some data sources are limited. The 40 national surveys reviewed for this project offer a variety of disability-related data. These surveys collect information about people with disabilities that covers a wide array of topic areas with varying degrees of detail. The list of surveys reviewed is not exhaustive and it is likely that most program administrators, policy makers, and researchers are unfamiliar with the content of all national surveys that contain information about people with disabilities. It is possible that some of the perceived limitations in existing disability data and unanswered questions might simply be due to a lack of awareness that certain survey data exist, or that certain administrative data can be accessed by external agencies. Some of the data limitations and unanswered questions indicated by state and federal agency staff might be addressed if information about the content of relevant surveys was known or if the resources to analyses these data in the ways needed to answer disability-related policy issues were available.

Several Census Bureau efforts were noted as being underutilized, such as small area estimates, which can calculate prevalence rates at the school district level, and research data centers, where researchers can go to gain access to results run on restricted data. The Census is also developing synthetic data files, which use variable imputations to mask the identity of survey respondents while making previously sensitive data available to the public.

One TAG member also mentioned an opportunity to coordinate state data collection efforts to produce a large, national database. Dissemination of these efforts to the research community might help many researchers answer questions currently perceived to be unanswerable with existing data.

Improving available information about existing data and making it easier for federal and state agency staff to access it is one potential way disability data limitations might be addressed. Reports such as those produced for this project, which summarize a great deal of information in a format that is easily accessible, are one way this can occur. The Rehabilitation Research and Training Center on Disability Statistics and Demography, funded by the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education, represents another effort to produce a variety of easily accessible information about and statistics from existing national data on people with disabilities. Periodic cross-agency panels or work groups that exchange information about the nature and limitations of disability data are other means that have been used. Examples of these include the ICDR, including its Interagency Subcommittee on Disability Statistics, and the Federal Interagency Forum on Aging Work Group on Data Needs. TAG members suggested organizing a disability statistics group, similar to the ICDR, which would hold monthly phone calls and periodic meetings to share information.

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