Though figures vary state-by-state, the number of people with intellectual or developmental disabilities living in nursing facilities has been steadily decreasing in the U.S. over the past 20 years. Indeed, it has been the goal of virtually every state to expand home and community services and to reduce nursing facility use (Wiener, 2006). Several initiatives have been implemented to expand community residential services and consumer directed services as alternatives to nursing facilities (Wiener, 2006).
Shortly after the inception of Medicaid in 1965, states began to place persons with intellectual or developmental disabilities in nursing facilities where their care was eligible for federal cost share under Medicaid. Advocates responded, noting that many more people with intellectual or developmental disabilities were living in nursing facilities than were appropriately served in them (National Association for Retarded Citizens, 1975). In fact, nursing home placements were so frequent that in 1977, 17,000 more people with intellectual or developmental disabilities lived in nursing homes than lived in community residences nationwide (Lakin, White, Prouty, Bruininks, & Kimm, 1991).
Congress responded to criticisms of nursing facility care with the Omnibus Budget Reconciliation Act of 1987 (OBRA-87). Provisions of this legislation restricted criteria for admissions to Medicaid-reimbursed nursing facilities, so that only those persons requiring the medical–nursing services offered would be admitted and that those admitted would receive appropriate active treatment for their developmental as well as medical needs. Current residents of nursing facilities determined not to need nursing services were required to be moved, with the exception of individuals who had lived in a specific nursing facility for more than 30 months should they choose to stay (Gettings, 1990). States responded by moving people with intellectual or developmental disabilities from nursing facilities to other settings. Although some (6%) went to other institutional settings, an overwhelming majority moved to community settings (Gettings, 1990).
Despite the intent of OBRA-87, the efforts to move persons with intellectual or developmental disabilities out of nursing facilities as described by states in their required “alternative disposition plans,” and the implementation of required preadmission screening and resident review (PASARR) provision, class action court cases established within a decade of the 1990 implementation deadline that the requirements of OBRA-87 were not always achieved (see Roland et al. v Cellucci et al., 1999, in Massachusetts; Olesky et al. v. Haveman et al., 1999, in Michigan). More numerous cases would likely have been filed for violation of OBRA-87 had not the Supreme Court in Olmstead established a right to placement in the most integrated setting under its interpretation of the Americans with Disabilities Act.
In another effort to reduce unnecessary institutionalization, in 2005, Congress authorized the Money Follows the Person (MFP) program to help states decrease the number of people with disabilities living in Medicaid institutions. The legislation provided a system of flexible financial services for long-term services and supports that moves Medicaid and Medicare funds with the individual to the most appropriate and preferred setting as the individual's needs and preferences change (Crisp, Eiken, Gerst, & Justice, 2003). No data could be located on the number of people with intellectual or developmental disabilities living in nursing facilities that benefited from the nursing facility transition program component of MFP.
This article looks briefly at the trends in nursing facility placements of persons with intellectual or developmental disabilities that parallel the legislative, administrative, and judicial requirements related to the placement of persons with intellectual or developmental disabilities in nursing facilities. The statistics reported were gathered by Residential Information Systems Project (RISP) funded by the Administration on Developmental Disabilities. RISP is a voluntary program to which states report annually data on a range of service use variables. Since 1988, these reports have included the number of people with intellectual or developmental disabilities living in nursing facilities. In June 1988 states reported an estimated 42,164 people with intellectual or developmental disabilities lived in U.S. nursing homes (see Table 1 and Figure 1). This number declined to 34,011 in 1998 and to 29,021 in 2007. More strikingly, the number of persons with intellectual or developmental disabilities living in nursing facilities as a proportion of the combined total of persons with intellectual or developmental disabilities living in nursing facilities and receiving non–family-based residential supports for persons with intellectual or developmental disabilities declined from 16% in 1988 to 10% in 1998 and 7% in 2007.
Between 1988 and 2007, the proportion of people with intellectual or developmental disabilities in residential services who lived in nursing homes declined in all but 6 states (Kansas, Maryland, New Hampshire, Pennsylvania, South Carolina, and Tennessee). The actual number of people with intellectual or developmental disabilities living in nursing homes declined in 35 states during this time period. In 10 states, the number of people with intellectual or developmental disabilities living in nursing homes increased, but the proportion of all persons in nursing homes compared with other types of residential services declined (Arizona, California, Florida, Hawaii, Idaho, Iowa, Kentucky, Nevada, New Mexico, and North Carolina).
These changes warrant further monitoring, as the average age of both the U.S. population as a whole and persons with intellectual or developmental disabilities increases. The clear policy directive from Centers for Medicare and Medicaid Services (CMS) is that community-based services should be available both for working-age adults and for older adults regardless of whether they have an intellectual or developmental disability. The question now is whether older adults with IDD will continue to experience the shift from institutional to community-based residential supports that younger adults with intellectual or developmental disabilities have benefited from until now. Questions about the appropriate identification of people with intellectual or developmental disabilities in CMS's minimum data set have made it difficult to use the minimum data set to examine whether the average age of people with intellectual or developmental disabilities in nursing homes has been increasing.
(Sources: Crisp, S., Eiken, S., Gerst, K., & Justice, D. (2003). Money follows the person and balancing long-term care systems: State examples, Washington, DC: Centers on Medicare and Medicaid Services. Accessed at http://www.cms.hhs.gov/PromisingPractices/Downloads/mfp92903.pdf; Gettings, R. M. (1990). Eliminating inappropriate nursing home placements: An analysis of federal-state implementation of OBRA-87's PASARR requirements. Alexandria, VA: National Association of State Mental Retardation Program Directors; Lakin, K., White, C., Prouty, R., Bruininks, R., & Kimm, C. (1991). Medicaid institutional and home and community-based services for persons with mental retardation and related conditions. Minneapolis: University of Minnesota, Research and Training Center on Community Living; National Association for Retarded Citizens. (1975). Nursing homes in the system of residential services. Arlington, TX: Author; Prouty, R., Alba, K., & Lakin, K. C. (2008). Residential services for persons with developmental disabilities: Status and trends through 2008. Minneapolis: University of Minnesota, Research and Training Center on Community Living; Wiener, J. M. (2006). It's not your grandmother's long-term care anymore. Public Policy & Aging Report, 16, 28–35.)
Edited by Charlie Lakin and David Braddock