Below, we describe the sources used to develop the information presented in this report.
1. Input from Government Agencies
Staff from 26 federal agencies and five state-level organizations provided responses to a set of questions related to their use of disability-related data, unanswered disability-related program and policy questions, subpopulations for which more information is desired, and efforts they have undertaken to address existing data limitations. The questionnaire and a list of agencies that provided responses are shown in Appendix A.
In identifying the agencies and staff to be solicited for input, we attempted to cast a broad net and include all federal agencies responsible for disability-related programs and policies. We also sought input from several federal agencies that have data collection, reporting, and program monitoring responsibilities. Although the federal agency perspective was the focus of our information collection activities, we also solicited input from a few state-level organizations. Once the list of target agencies was developed, specific individuals were identified to be contacted via email to provide input. These individuals were identified through the project team members contacts in the disability field as well as through Internet searches and suggestions from federal staff and disability researchers. The large majority of agencies contacted provided input; only six of 37 agencies contacted did not respond.
Following receipt of the written input, we convened a Federal Advisory Expert Panel (FAEP) for a one-day meeting. The purpose of the meeting was to present the information collected on the nature of the disability data needs of federal agencies and limitations of existing data, and to obtain input on promising disability data improvement options that might be considered by HHS in coordination with other federal agencies.Representatives from 13 of the federal agencies that submitted written input accepted invitations to be members of the FAEP and participated in the meeting. Prior to the meeting, a summary of the federal and state input was distributed to FAEP members for review. A summary of the FAEP proceedings is provided in Appendix A.
2. Review of Existing Disability Survey Data
To develop an understanding of the scope and limitations of existing disability data, we conducted a review of 40 national surveys that cover a range of topics likely to be of importance to the policies, programs, and issues that affect the lives of people with disabilities. An important goal of this review was to provide written summaries documenting the key features of each survey that could act as a quick-reference guide for the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and other federal agency staff.
In selecting the surveys to be reviewed, we were guided by the following criteria:
The survey was federally-sponsored and national in scope.
It was fielded in 2000 or later.
If not fielded since 2000, the survey contains significant disability-related content or other information of particular relevance to individuals with disabilities and the unaddressed issues identified by the federal agencies.
We identified 40 surveys that met these requirements.1 A tabular, quick-reference summary of the features of the 40 surveys reviewed is provided in Appendix B; more detailed text summaries of each survey are provided in a companion report (Livermore et al. 2011b).
3. Technical Advisory Group
A final source of information for our assessment was a Technical Advisory Group (TAG) convened for the project. The TAG was comprised of federal and nongovernment experts in the areas of disability data, research, and policy issues. The purpose of the TAG was to provide feedback on the findings from the FAEP meeting and the disability data review, and offer their ideas about specific options that might be pursued to address current disability data limitations. A one-day meeting was convened for this purpose. A summary of the proceedings of the TAG meeting is provided in Appendix C.