If HHS and other agencies are interested in pursuing a national disability survey, the critical next step would be to define the specific scope and purpose of the survey. A national disability survey would be most useful if it addressed specific disability data limitations that cannot be easily addressed by other, more incremental means, but there might be other reasons to focus the survey on particular topics or subpopulations. The limitations that seem most difficult to address with incremental methods relate to modifying the sample design and population coverage to include people with disabilities in a variety of residential settings, and the collection of longitudinal information to capture disability dynamics and transitions, particularly for the working-age population. A survey that addresses either or both of these limitations would require a significant amount of effort to design and execute, and would represent a significant departure from current efforts.
The process of identifying the scope and purpose of the survey might involve a series of meetings among HHS staff and selected representatives from other agencies. A standing work group might be created for this purpose. The survey purpose ultimately agreed upon will require a strong rationale in order to gain internal and external support. Thus, the early activities of the work group might include: defining the broad purpose of the survey and its rationale, developing a list of specific questions the survey data are intended to address, and documenting the reasons why these questions cannot be addressed with existing data. Once the scope and purposes have been sufficiently defined and supported with a strong rationale, the work group meetings could continue to be the platform for decision making regarding funding mechanisms, design features, and content.