For change to be possible we must understand each other.

History of Disability Services in the United States

Today, people with disabilities have many opportunities to live, work, and play in their communities. Community-based services, while certainly limited in many ways, are generally available and accessible to those people who are in need. Families have choices in where and how their children with disabilities are supported and educated. But this has not always been the case. To understand the present, one must know the history.

The development of services for people with mental retardation and other disabilities in the United States had its early beginnings in 1848. Prior to that time, people with disabilities were generally kept at home with their families, with little or no outside support. An experimental school in Boston was one of the first attempts to formally educate people with mental retardation. The philosophy of these early schools was to "make the deviant undeviant" and they were revolutionary at the time in their attempts to educate people with mental retardation. However, by 1877, a medical model of mental retardation that viewed people as sick and incurable replaced the educational approach. Likewise, the service philosophy changed to "sheltering the deviant from society."

With the discovery of the principles of Mendelian genetics, a new concern for the "purity of the gene pool" arose. Fueled by studies such as the "Jukes" study by Robert Dugdale, which linked the degeneracy of the Jukes family to inherited mental deficiency, the link between "idiocy, pauperism, insanity and crime" gained popularity. During this time, the role of services for people with disabilities again changed, to "the protection of society from the deviant." Protection was defined in the broadest of terms, including protection of the gene pool, and by 1926 there were 23 states that had mandatory sterilization laws for institutionalized residents. Between 1925 and 1955, over 50,000 mandatory sterilizations occurred in the United States alone.

In the 1950s, parents of people with disabilities began to organize to provide opportunities for their children other than institutionalization. The Association of Friends and Parents of the Mentally Retarded, now The Arc, was one of the first such parent organizations that began to open the doors of large institutions. Early advocacy efforts focused on education for people with mental retardation and the movement received a pivotal victory in 1954 in Brown v. Board of Education. Although the case was not specifically related to people with disabilities, it affirmed the right of all citizens to an equal education. Parents demanded that their children with disabilities be educated, preferably in the same schools as non-disabled children. In 1975, Public Law 94-142 assured special education programs would be available to all children in need.

In 1977, U.S. District Judge Raymond Broderick ruled that keeping people with mental retardation in institutions was a violation of their constitutional rights in the landmark class action suit against the Penhurst School for the Mentally Retarded in Pennsylvania. Similar suits were filed across the country and brought the concepts of deinstitutionalization, normalization, and least restrictive environment into the vocabulary of services for people with mental retardation. Unfortunately, early support from states for these concepts was minimal and implementation varied significantly from state to state. Some states used the concepts to begin creating inclusive community-based programs, others created dual systems, maintaining both a large institutional population and smaller community-based programs. Still other states merely shifted people from one setting to another under the guise of least restrictive environment. Many people with disabilities were moved from large state-run institutions to smaller private institutions and nursing homes that offered little or no benefit to the individual.

In recent years, the emphasis in services for people with mental retardation and other developmental disabilities has been on reintegrating people back into the communities they were once a part. The new concepts of individual self-determination, individualized supports, and consumer-driven services have largely replaced the fears and misconceptions of the past. Many states have made concerted efforts to reach people inappropriately placed in nursing homes and private facilities and return them to their communities. Home and community-based services, independent living, and small group and family homes are now the primary means of providing services for people with disabilities. We have almost come full circle in our philosophy, with people with disabilities again living at home in their community, either their families or their own, but now with supports and services designed around their needs.

We are, however, not finished with the changes in our services and philosophy. More work is needed to assure that people with disabilities are viewed not as deviants, but as equals.

Citations

• Dickerson, M. (1981). Social work practice with the mentally retarded. New York: Macmillan.
• Evans, D. (1983). The lives of the mentally retarded people. Boulder: Westview Press.
• Rosen, M., Clark, G., & Kivitz, M., Eds. (1976). Introduction. The history of mental retardation. (pp. IX-XXIV). Baltimore: University Park Press.