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Statement for the Record by Susan E. Dudley
Office of Information and Regulatory Affairs
U.S. Office of Management and Budget

For the Hearing before the Information Policy, Census, and National Archives Subcommittee
Oversight and Government Reform Committee
U.S. House of Representatives

“Does Federal Statistical Data Adequately Serve People Living with Disabilities?”

June 4, 2008

Chairman William Lacy Clay, Ranking Member Michael Turner, and Members of the Subcommittee, as Administrator of OMB‘s Office of Information and Regulatory Affairs (OIRA), I am pleased to provide this statement for the record for your hearing on “Does Federal Statistical Data Adequately Serve People Living with Disabilities.” Under the Paperwork Reduction Act of 1995 and predecessor legislation, OIRA is responsible for a number of statistical policy and coordination functions. Among other things, within my office the Chief Statistician of the United States is charged with promoting the quality, integrity, objectivity, and utility of Federal government statistics and with issuing various classifications and definitions to standardize the collection and analysis of data gathered by the agencies of our decentralized statistical system.

My statement focuses on the April 8, 2008, report of the National Council on Disability (NCD), “Keeping Track: National Disability Status and Program Performance Indicators.” In particular, I would like to apprise you of some recent developments within the Federal statistical system with respect to the collection and dissemination of status indicators of the condition and progress of the disabled population in the United States. Within that context, we are pleased to report that while challenges indeed remain, considerable progress has been made.

In its recent report, the NCD suggests that current federally sponsored surveys do not include adequate measures of disability. Further, the NCD maintains that in cases where measures are included, they vary across surveys with respect to consistency in definition and administration, and thus preclude comprehensive comparisons across data sources. The report suggests the promotion of a standard set of disability questions and recommends that the definition should identify people who, because of their functional limitations, are at risk for the loss or restriction of opportunities to take part in the normal life of the community on an equal measure with others. It further proposes that the questions used to operationalize this definition should meet several criteria, including, among others, minimizing the number of questions necessary to capture needed concepts and ensuring their reliability and validity for self-reporting. A second recommendation calls on Federal agencies to provide comparisons of people with and without disabilities in their aggregate reports and to provide comparisons of people with disabilities by demographic and socioeconomic status characteristics (where sufficient data exist). Third, with respect to indicators of the condition and progress of the disabled population, the NCD recommends a set of “statistical social indicators” to be used to measure annually the status of working-age (ages 21-64) people with disabilities and recommends the expansion of federally sponsored disability data collections. The report proposes a set of 18 indicators (considered key quality of life indicators) to track the status over time of people with disabilities. While the NCD does not suggest that all 18 indicators be collected in each Federal survey, the report specifically calls for each survey to collect indicators of disability.

I am pleased to report that the agencies of the Federal statistical system have a variety of activities currently under way that respond to these recommendations.

  • First, in conjunction with ongoing work on the American Community Survey (ACS), the Census Bureau, in collaboration with other statistical agencies, has completed the development of a common set of disability measures that use the NCD‘s suggested definition of disability and meet the criteria outlined by the NCD. As the members of this subcommittee know well, the ACS has replaced the Decennial Census long form and will provide data annually, rather than only once a decade.

    • The ACS disability questions are similar to and based on the same theoretical reasoning as those that have been developed for use in the international community. As the NCD has recommended, the ACS disability measures focus on difficulties people have in undertaking basic activities, such as concentrating or remembering, walking or climbing stairs, and dressing or bathing, as well as in hearing and seeing.

    • The new disability questions were first included in the ACS beginning in January 2008, and will continue to be used on an ongoing basis, thereby providing data annually.

    • Thus, as the ACS data are disseminated in the future, it will be possible to distinguish outcomes for the disabled population on an array of social and economic characteristics ranging from educational attainment to earnings and poverty status to employment status and means of commuting to work.

  • Second, I am pleased to report that the same series of questions currently on the ACS will be implemented in other Federal data collection activities.

    • Beginning this month, the Bureau of Labor Statistics will use these questions in the Current Population Survey (CPS), which provides a comprehensive body of data on the labor force, employment, unemployment, and individuals not in the labor force, with the intention of publishing information on a monthly basis beginning early next year. Data from the CPS, which follows respondents over a period of time and provides greater detail on certain variables, will provide information on the disabled population with respect to a number of the indicators called for in the NCD report, including those related to education, employment, and marital status.

    • Furthermore, beginning with the collection of the Annual Social and Economic Supplement to the CPS in 2009, it will become possible to analyze the basic CPS data in conjunction with the supplement data to gain additional understanding of the income and poverty status of the disabled population.

    • Moreover, the National Crime Victimization Survey (NCVS), which produces annual estimates of crime, recently began to collect data on the disabled using the ACS questions; the first annual report on victimization of the disabled is anticipated later this year.

  • Third, in the area of health statistics, a joint research project is under way that will add the ACS version of the disability questions to the National Health Interview Survey (NHIS). This project is part of a broader interagency effort to improve the collection and interpretation of information on disability. The NHIS, which monitors the health of the population through the collection and analysis of data on a broad range of health topics, displays this information by many social and demographic characteristics. At the present time, the NHIS gathers information on the health status and health care indicators outlined in the NCD report, as well as other questions related to functioning and participation. The National Center for Health Statistics will be undertaking a review of the disability and functioning measures currently on the NHIS to identify design changes that would enhance its comparability with other national and international data collections and provide the more detailed information necessary to fully understand the complexities of disability.

  • Finally, at the international level work is progressing on the development of extended sets of questions and indicators that use a comprehensive conceptual matrix/model with links to the measurement issues recommended in the NCD report. This matrix not only outlines the parameters for collaborative work with other question development groups, but provides the roadmap for filling in the gaps that now exist in available data and can provide guidance in working across surveys nationally as well as internationally.

In sum, the inclusion of these standardized disability questions on multiple Federal surveys, administered with regular periodicity, will result in greater coverage of the indicators necessary to gain a better overview of the quality of life of people with disabilities, and meet the recommendation to widely include similar measures of disability (based on a consistent definition of disability) in Federal data collections. Moreover, it is my understanding that the Department of Health and Human Services will issue a new report on disability and health in early July 2008. This report will, for the first time, use disability measures promoted in the NCD report that adhere closely to the definitions of disability provided in current theoretical and legislative models. Focusing on the non-institutionalized population ages 18 and over, the report will bring together information on aspects of health status including obesity, risk behaviors such as smoking and alcohol use, insurance coverage, and sources of and access to preventive and other health care.

Recognizing that we must carefully balance legitimate needs for information with the burden we may impose on respondents, my office at the Office of Management and Budget and the agencies of the Federal statistical system look forward to continuing our work to improve the quality and scope of data collected and disseminated on the condition and progress of our Nation‘s disabled population.

Thank you for the opportunity to provide written testimony today.