Willowbrook Review Panel Records, 1968-1981, bulk 1975-1981
- The Willowbrook Review Panel was a Federal monitoring group established by the U.S. District Court in 1975 and dismissed from its duties in 1987. The Willowbrook Review Panel Records provide extensive documentation of the Panel's main function: monitoring implementation of the 1975 Willowbrook Consent Decree in New York State which set new standards for the care of the facility's residents.
- 112.25 cubic ft.
- English .
- Preferred citation:
- Preferred citation for this material is as follows: and Identification of specific item, series, box, folder, Willowbrook Review Panel Records 1968-1981 (APAP-127). M. E. Grenander Department of Special Collections and Archives, University Libraries, University at Albany, State University of New York (hereafter referred to as the Willowbrook Review Panel Records).
Access and Use
- Conditions Governing Access:
The Willowbrook Review Panel was a Federal monitoring group established by the U.S. District Court in 1975 and was dismissed from its duties in 1987. The records were house at the American Civil Liberties Union office until cleared by the National Archives for restricted access in 2002. Portions of series 1-10 are restricted due to the personal information in the records. Researchers must complete a non-disclosure form before gaining access and reproductions are not permitted. Counsel for the plantiffs or members of the Review Panel may continue to have access to the records without restriction.
The researcher assumes full responsibility for conforming with the laws of copyright. Whenever possible, the M.E. Grenander Department of Special Collections and Archives will provide information about copyright owners and other restrictions, but the legal determination ultimately rests with the researcher. Requests for permission to publish material from this collection should be discussed with the Head of Special Collections and Archives.
- Scope and Content:
The Willowbrook Review Panel records provide extensive documentation of the Panel's main function: monitoring implementation of the Willowbrook Consent Decree in New York State. There are near-complete files on audits conducted by the Panel at Willowbrook and other state residential facilities, containing everything from raw data gathered by auditors to final reports on audit findings. The Review Panel's extensive files on community placement illuminate the process of finding family care and small group living situations for thousands of developmentally disabled citizens of New York State. A lengthy run of 90 Day Progress Reports written by Willowbrook officials for the Panel documents New York's attempts to bring the facility into compliance with the Consent Decree standards. There are extensive operational plans for related facilities, which spell out in detail how facility staff sought to improve the quality of life for Willowbrook class members.
The Panel maintained files on Willowbrook and related facilities, and these files provide a look at New York State's facilities for the developmentally disabled during an important period of transition. However, these files are by no means a complete picture of each institution, and the depth of documentation varies considerably from facility to facility. There are also files related to the New York State Department of Mental Hygiene and the Office of Mental Retardation and Developmental Disabilities. Particularly notable are the files with correspondence between Mental Health Commissioners and the Review Panel.
The records also document the controversy over Flower Fifth Avenue Hospital. New York State planned to move class members from the physically deteriorating Gouveneur Unit of the Manhattan Developmental Center to the Mental Retardation Institute of the Flower Fifth Avenue Hospital, which was affiliated with New York Medical College. Following the move, several residents died unexpectedly, and the Review Panel found the standards of care at Flower Fifth to be unacceptable. Files related to Flower Fifth include audit materials, information on community placement of Flower Fifth residents, evaluations of individual residents conducted by an outside consultant, and correspondence.
Subject files and publications collected by the Review Panel provide a larger context for the Willowbrook case. Included in the subject files are files on community placement and deinstitutionalization in other areas of the country, as well as theoretical writings on topics related to care of the developmentally disabled. News clippings from the Staten Island Advance, the New York Times, and other publications illustrate how Willowbrook, the Consent Decree, and the developmentally disabled themselves were perceived within the surrounding community.
The records include considerable administrative files, which provide evidence of the day-to-day operation of Panel staff. The bulk of the administrative files consist of correspondence, mailings, and meeting packets. Almost completely lacking is background information on the Panel members, and there is no evidence at all of the Panel selection process.
The records contain little information about Willowbrook Developmental Center in the years prior to the Consent Decree; there is little evidence of the circumstances that prompted the class action lawsuit of 1972. The New York Civil Liberties Union files located at the end of the collection provide the best documentation of the legal case itself. There are a few court documents from the Review Panel files in a series of their own, but these are not as complete as the NYCLU legal records. The records also stop well before the process of closing Willowbrook was completed in 1987.
- Biographical / Historical:
In 1938, the New York State Legislature authorized the construction of Willowbrook State School on Staten Island as a residential facility for developmentally disabled children and adults. By the time construction was complete, the United States had entered World War II, and the federal government took control of the facility for use as a hospital. The first developmentally disabled residents did not start move in until 1947. Willowbrook was originally intended to house fewer than 3,000 residents, but by 1955 it housed over 3,500 residents. By 1963, 6,000 residents lived in buildings intended to hold only 4,275 [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 22-23].
Overcrowding and staff apathy resulted in extremely poor conditions for Willowbrook residents. A New York State legislative committee toured Willowbrook in 1963 and was horrified by what they saw, but the committee's findings were kept confidential. In 1965, Senator Robert Kennedy referred to Willowbrook as a "snake pit" after an unannounced visit to the facility. New York State responded by developing a five-year plan to improve care for the developmentally disabled in all state facilities, but the plan failed to make the necessary improvements [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 23].
In 1972, Geraldo Rivera, then a local reporter for TV station WABC in New York, drew national attention to Willowbrook's deplorable conditions through a televised expose. Rivera was contacted on January 6, 1972 by Michael Wilkins, an old friend. Wilkins had been employed as a staff physician at Willowbrook, but was fired for stirring up trouble at the facility after advocating for change in the care of residents. Wilkins still had a key to the Willowbrook buildings, and he offered to provide access to Rivera and a camera crew. The next day, Rivera and his crew filmed footage of conditions in Willowbrook's Building 6. The story aired that night and included shocking images of children lying on floors naked and drinking out of toilet bowls. Public outcry began almost immediately [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 17].
On March 17, 1972, a class action lawsuit was filed on behalf of Willowbrook residents by the New York Association for Retarded Citizens and several parents of Willowbrook residents. The lawsuit was prepared by Bruce Ennis of the Mental Health Law Project. Legal counsel was also provided by the New York Civil Liberties Union. On December 18, 1972, a five-day hearing on the issue of preliminary relief was held. Preliminary relief was intended to prevent the condition of Willowbrook residents from deteriorating further while legal proceedings took place. Although preliminary relief was granted by Judge Orrin Judd, the plaintiffs were dissatisfied with its terms. In contrast, the final outcome of the lawsuit - a Consent Decree officially accepted on April 30, 1975 following lengthy negotiations between the two sides - was viewed by the plaintiffs as a major victory for Willowbrook residents [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 57-60, 123]. (The Consent Decree is sometimes referred to as the Consent Judgment in the Review Panel's records).
The Consent Decree was a twenty-nine page document that set new standards for the care of Willowbrook residents. Its stipulations were aimed at improving the physical, social, and educational environment of Willowbrook Developmental Center. Most significantly, it required the state to reduce the population of Willowbrook from 5400 to about 250 by moving residents out of the institution and into small, community-based residences. (Although the Consent Decree stated that this reduction in Willowbrook population was to occur by 1981, this deadline proved unfeasible. The Consent Decree was not fully implemented until 1987.) The guiding principle of the Consent Decree was that all Willowbrook class members were entitled to the "least restrictive" living environment possible. In short, it called for the largest mass deinstitutionalization in the history of the United States [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 1-2].
The Willowbrook Review Panel (WRP), was intended as a temporary arm of the court which would monitor implementation of Consent Decree guidelines at Willowbrook. It consisted of seven members, all experts in the field of mental retardation. The Consent Decree called for three members to be chosen by the plaintiffs, two by the defendants, and two appointed jointly. Plaintiffs selected Linda Glenn, who was experienced with community placement of developmentally disabled individuals in Nebraska; Michael Lottman, an expert in mental health law and an attorney with the Civil Rights Division of the U.S. Department of Justice; and Murray Schneps, a lawyer and parent of a Willowbrook resident. Defendants selected William Bittner, an assistant commissioner in the state Department of Education; and James Forde, the acting director of Willowbrook. Jointly appointed were James Clements, head of the Georgia Retardation Center; and David Rosen, who headed community programs for the developmentally disabled in Detroit [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 57, 76, 101, 127-128, 130]. The Panel held regular meetings twice a month, usually for two days at a time, and issued reports to the court every six months.
The terms of the Consent Decree also provided for professional staff members, paid by New York State, to support the Panel's activities. These staff members included several Program Associates and an Executive Director. Jennifer Howse was the Panel's first Executive Director. In 1978, she left the Review Panel to become head of the Metropolitan Placement Unit, the state agency responsible for developing community residences for Willowbrook class members. Kathy Schwaninger replaced Howse as the Executive Director. Panel staff members worked out of an office located in the World Trade Center.
According to the Consent Decree, the role of the Panel was simple: to investigate the state's progress towards implementing the Consent Decree and to report to the court on the State's progress. Little was said, however, about how the Panel should accomplish this goal. The Panel took an extremely proactive approach, developing a complex system of standards and audit instruments against which to measure New York's progress toward improving conditions at Willowbrook.
The influence of the Review Panel also extended far beyond Willowbrook itself. The terms of the Consent Decree applied to all who resided at Willowbrook as of March 17, 1972, the date that the class action lawsuit was filed. This group, called the Willowbrook Class of 1972, included many people who had subsequently been transferred out of Willowbrook and into other state residential facilities. Many residents were transferred out of Willowbrook by the state between the initial filing of the class action lawsuit and the issuing of the Consent Decree. This was seen as a deliberate attempt by the state to improve its image by voluntarily reducing the Willowbrook population. The Review Panel monitored conditions in these related facilities, and the related facilities were held to the same exacting standards as Willowbrook. The Panel also took an avid interest in the placement of Willowbrook class members in community residences. The Panel closely followed the activities of the Metropolitan Placement Unit, a New York State Agency established to create acceptable, non-institutional living situations for class members.
The Panel was disbanded in 1980 for political reasons. Some in state government saw the Panel as a waste of money, and the state Office of Mental Retardation and Developmental Disabilities had long resented that an instrument of the Federal court had been given such influence over the office. Because of these political pressures, the New York State Legislature failed to fund the Review Panel for the 1981-1982 fiscal years. District Court Judge John Bartels, who took over the Willowbrook case following the death of Judge Orrin Judd in 1976, ordered the Governor and the Office of Mental Retardation and Developmental Disabilities to fund the Panel or be found in contempt of court. The state appealed, and Bartels' order was overturned by a higher court [Rothman, David J. and Shelia M. Rothman, The Willowbrook Wars, New York: Harper and Row, 1984, 315-319].
For a detailed discussion of the Review Panel's activities, as well as discussion of the Consent Decree's importance for the care of the developmentally disabled, see The Willowbrook Wars by David J. Rothman and Sheila M. Rothman. The Rothmans, both social science researchers, used the Consent Decree as a case study of deinstitutionalization and community placement. The Review Panel gave the Rothmans extensive access to their meetings and files during the period 1978-1981. A copy of their original research proposal is located in Series 9, Box 5, Folder 5.
- Acquisition information:
All items in this manuscript group were donated to the University Libraries, M.E. Grenander Department of Special Collections and Archives, by the American Civil Liberties Union in November 2001. The Review Panel, upon its demise, deposited the records with the American Civil Liberties Union.
The collection is organized into 14 series.
- Processing information:
Processed in 2005 by Aimee Morgan, Ted Hoppenstedt; Box and folder list compiled by Elizabeth Golnek, Lakeisha Swaby, Mindy Groseclose.
- Medicine and Health Care
Developmental disabilities--New York (State)
Mental retardation--New York (State)
Special education--Law and legislation--New York (State)--Social aspects
Mental retardation facilities--New York (State)
Mental retardation facilities patients--New York (State)
People with mental disabilities--Abuse of--New York (State)
People with mental disabilities--Care--New York (State)
People with mental disabilities--Education--New York (State)
People with mental disabilities--Home care--New York (State)
People with mental disabilities--Institutional care--New York (State)
Developmentally disabled--Home care--New York (State)
Developmentally disabled--Institutional care--New York (State)
Deinstitutionalization--New York (State)
- Willowbrook Review Panel
Staten Island Developmental Center
New York Civil Liberties Union
New York (State)--Bureau of Developmental Disabilities
New York State Association for Retarded Children
Staten Island Developmental Center--Trials, litigation, etc.