Collecting information on disability in the 2000 Census: an example of interagency cooperation

The United States Constitution requires that an enumeration (or census) of the population be conducted every 10 years to apportion seats in the House of Representatives. Census information is also used to allocate funds and to plan and manage programs. Census 2000 occurs on April 1, 2000, when one-sixth of all American households will be mailed the "long form," containing disability, demographic, economic, and housing questions. Although no short set of commonly accepted questions on disability existed, one was developed for Census 2000 by a collaborative, federal interagency work group on disability, convened by the Office of Management and Budget. The work group consisted of staff from the Social Security Administration (SSA), the Department of Health and Human Services, the U.S. Census Bureau, and other agencies. They reviewed questions initially proposed by the Census Bureau, developed an alternative proposal, tested both versions in the Census Bureau's cognitive questionnaire lab, and on the basis of testing, derived a consensus version for Census 2000. In many ways, the six questions now contained on Census 2000 are an improvement over previous efforts. Disability is ascertained for children as well as for adults, and information will be collected separately for several domains of disability (for example, sensory, mental, physical). The need for a brief set of disability measures goes beyond Census 2000. If such data were collected regularly on national surveys, critical policy and program concerns across agencies could be addressed because better information could be gathered on changes in disability prevalence and on the characteristics of persons with disabilities. Other similar efforts include the former Disability Evaluation Study, now known as the National Study of Health and Activity--a national sample survey on working-age disability to be conducted by SSA--and the President's Task Force on the Employment of Adults with Disabilities (Executive Order 13078).