For more than 40 years, the concept of the deinstitutionalization of people with developmental disabilities has been a burning issue among the families of such individuals and the people who care for them.
Dr. Burton Blatt, a Syracuse University Professor and Dean of the School of Education, published two books during the 1960’s that shocked many advocates for the rights of people with disabilities. The first book, “Christmas in Purgatory,” was a part pictorial essay that resulted from Blatt sneaking a hidden camera into several institutions for clients with “mental retardation”. Appalling conditions were revealed and there was a public outcry to close the institutions.
Five years later, Blatt smuggled a camera into the institutions, once again, to prove nothing had changed. The second publication “Return to Purgatory” convinced many that officials were dragging their feet when trying to resolve the disturbing issue of the quality of care for people with developmental disabilities.
However the national media became involved in 1972 when Geraldo Rivera, a young reporter for the local ABC flagship station in New York, broadcast the story about the horrid conditions at the Willowbrook State School in New York. Rivera became a nationally known reporter and several states, particularly in New York and New Jersey, began to deinstitutionalize many of their developmentally disabled residents and placed them in the community.
The federal government became involved when, in 1995, the Atlanta Legal Aid Society filed litigation on behalf of two residents with intellectual disabilities who desired to live in the community and were denied the opportunity. Four years later, the United States Supreme Court rendered a decision in Olmstead v. L.C. & EW, 527 U.S. 581 (1999), that determined that involuntary civil commitment was a violation of Title II of the Americans With disabilities Act (ADA). In fact, the Court stated that people with “mental retardation” had the right to live in the community provided that: "the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities”. ]
Without question, it should be the right of any individual to reside in a community setting. Certainly, such living arrangements, such as group homes, should be available, provided they meet the criteria that have been set by the Court. They must be less restrictive than the institutional setting, and appropriate services must be available and deliverable to the person with a disability.
Nevertheless, the Olmstead decision does not mandate that all people with developmental disabilities should be transferred to the community, nor does it state that the larger institutions should be closed. All people, including those with disabilities, are unique and have different needs. We need a variety of settings from a continuum that provides a variety of services.
The idea of the transfer of every person with a disability to the community is simplistic and without merit. It is a concept born out of a singleness of purpose that does not examine the unique needs of every individual.
Dr. Salvatore Pizzuro, a Disability Policy Specialist, holds a doctorate in Developmental Disabilities from Columbia University and an advanced degree in Disability Law from New York Law School.