Persons With Mental Retardation and Related Conditions in Mental Retardation Facilities: Selected Findings from the 1987 National Medical Expenditure Survey. Part 1: Background and Overview


For over a century now the United States government has itself collected and/or has contracted with other agencies to collect basic information on the populations residing in institutions1 for persons with mental retardation and related conditions. Government attempts to enumerate persons in mental retardation facilities began as part of a notably more ambitious project. In the decennial censuses of 1850 through 1890 a serious, although apparently unsuccessful, attempt was made to count the total number of people in the United States who were among the "detective [i.e., mentally, physically or sensorially impaired], dependent, and delinquent classes." However, it was soon reasonably clear to those directing the special census that because of reluctance of families to report stigmatizing conditions, lack of operational definitions and low public familiarity with specific disorders, the entire effort could at best be called imprecise. Still, the 1880 and subsequent census did show apparent success in obtaining statistics on "inmates of institutions," including 40,942 people in institutions for "the insane," 2,429 people in institutions for "idiots," 2,158 people in institutions for "the blind," 5,267 people in institutions for "deaf-mutes," and 66,203 people in almshouses (U.S. Census Bureau, 1888).

In 1900 no attempt was made to do a census of "special classes" in conjunction with the national census, and in 1902 further attempts to conduct such enumerations were specifically limited by Congress to persons residing in institutional settings: "The statistics of special classes ... shall be restricted to institutions containing such classes (House Reports, 1902, p. 48). Studies of the institutionalized populations of persons with mental retardation and related conditions have continued until the present day. From early housing of the data collection efforts with the Bureau of the Census, where they remained through 1946, federal efforts to conduct or fund research on institutional and special settings populations have been passed to a range of agencies focused on specific populations (e.g., the National Institute on Mental Health), or specific programs (e.g., the Health Care Financing Administration), or agencies with more general topical or data gathering responsibilities (e.g., the National Center on Health Statistics, National Center on Health Services Research, or periodically the U.S. Bureau of the Census). This disjointed responsibility, in which statistical agencies have focused primarily on their own programs, their own interests, and their own populations, all in their own way, has led to particularly significant limitations in the overall coverage, comprehensiveness, coordination and quality of statistics on persons with mental retardation and related conditions in institutional or alternative care facilities, because no major federal program or statistical agency has this group as its primary interest. The 1987 National Medical Expenditure Survey, with its Institutional Population Component including a large sample of persons with mental retardation and related conditions in supervised care arrangements represented a significant step in overcoming such problems.

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