In a previous article I described the beginning of the deinstitutionalization process at the Willowbrook Developmental Center.

The Consent Decree called for the establishing of the Willowbrook Review Panel which consisted of two individuals selected by the State, three selected by the plaintiffs and two experts in the field of mental retardation.

Staff was hired for the Panel and it became the legal monitor with reporting responsibilities to the Federal Judge who was to oversee the mandates of the Decree.

One of the sections of the Decree states that all parties to the judgment shall “be bound by and shall implement the recommendations of the Review Panel”. The Review Panel met on a quarterly basis, but its staff began making regular surveys of the Willowbrook Developmental Center.

In addition, and this was of tremendous importance, its authority carried over to any programs that were to be provided outside of the Developmental Center.

Therefore, private agencies operating community residences were subject to the same mandates as the State.

Although many years have passed since the Willowbrook decree was signed, it is still is an effective force. The Willowbrook Class includes all individuals who were residents of the Willowbrook Developmental Center at the time the litigation was brought against the State. Shortly after the State signed the Consent Decree, Geraldo Rivera (1974) did a series of “exposés” on the Willowbrook State School as an aftermath of the Willowbrook Consent Decree. People in the Metropolitan New York area saw, for the first time, the deplorable conditions prevalent at Willowbrook.

In 1973 the State of New York Office of Mental Retardation and Developmental Disabilities contracted with a private voluntary health agency to send in mini¬-teams consisting of Physical Therapists, Occupational Therapists, Speech Pathologists and Registered Nurses to demonstrate to the direct care staff of Willowbrook the best methods of providing services to multi-handicapped residents of that institution.

This was the beginning of a new era for individuals who were mentally retarded and or developmentally disabled in New York State, because the process that started with the Willowbrook Litigation was to affect all of the individuals who were retarded and or developmentally disabled.

At the time the Willowbrook Consent Decree was signed, New York State was obtaining Federal funding for programs within its institutions but no Federal funds were available for community residences or for day treatment programs for deinstitutionalized retarded individuals.

This situation was doubly distressing to the State. The Willowbrook Consent Decree mandated the phased discharge of most of the residents of Willowbrook Developmental Center. Previous to deinstitutionalization, the Office of Mental Retardation and Developmental Disabilities had been receiving Federal funds via a Medicaid rate for each resident at the Center. When a resident was discharged into the community, the State not only lost the funding for the resident within the institution, it also had to fund the community residence in which the deinstitutionalized individual was now living.

At that time, one of the strongest arguments for deinstitutionalization, aside from normalization, was one of reduced costs. It was assumed that the cost to keep a resident in the community would be much less than keeping him in a large institution.

The New York State Division of the Budget soon discovered that the loss of Federal dollars to the Willowbrook Developmental Center, and the fact that the community residence program was financed 100 percent via State dollars, added up to an overall increase in costs rather than a decrease.

The community residences, as they were originally called in official Office of Mental Retardation and Developmental Disabilities language, were usually small group homes of less than 14 residents, more typically from 4 to 6 residents.

The residences were staffed by house parents and, depending on the number of residents in the home, a part-time cook or aide. The residents attended a day program at a rehabilitation center or school for six hours daily and returned to the residence evenings and weekends. As more and more former Willowbrook residents left the institution, and more community residences opened, a fiscal stress was felt by New York State, which had been the primary funding source for the residence.