Deinstitutionalization and Inclusion Through Court Cases

Permanent Injunction Summary transcript.txt

Willowbrook and The New York State Association for Retarded Children V. Carey

The Willowbrook case (1972), sparked by the Geraldo Rivera expose, and the resulting Consent Decree (1975) and Permanent Injunction (1993) reflect a significant shift in the treatment of individuals with intellectual and developmental disabilities from large, centralized institutions like Willowbrook towards community-based care. Reflecting the broader deinstitutionalization movement,the agreements and guidelines outlined in the Permanent Injunction emphasize providing individualized services and transitioning the members of the class-action lawsuit from Willowbrook to smaller, more personalized residential settings in the community. 

The Permanent Injunction mandates high-quality services, adherence to standards, and preparation for transitioning residents to community residences, promoting the inclusion and integration of individuals with intellectual and developmental disabilities into society. Community-based settings offer more opportunities for social interaction, participation in community activities, and a better quality of life than institutional settings, aligning with the principles of inclusion and normalization. 

The exposure of the inhumane treatment, horrid living conditions and abuse of people with intellectual and developmental disabilities within the Willowbrook institution ignited reforms. By the early 1970s, people began to shift their perspectives of people with intellectual and developmental disabilities from seeing them as deviant and uneducable to recognizing that they could be members of society living in communities. The Willowbrook case set a precedent for the humane and ethical treatment of people with intellectual and developmental disabilities within institutions.

General Principles, Techniques, and Procedures for Investigations and Principles of Whistleblowing

The State of New York Commission on Quality of Care for the Mentally Disabled created a document, General Principles, Techniques, and Procedures for Investigations, as a result of the Willowbrook case, to help institutions to ensure humane and ethical treatment of patients by holding institutions accountable. This document is a step-by-step guide to standards and procedures in conducting investigations of abuse, neglect, or other mistreatment. 

Whistleblowers such as Drs. William Bronston and Michael Wilkins, were key informants for Rivera’s expose and the catalyst for the Willowbrook class-action lawsuit. In 1979, Doug Biklen and Milton Baker published Principles of Whistleblowing through the Center on Human Policy and the Developmental Disability Rights Center of the Mental Health Law Project. This document provides a rationale for the importance of whistleblowing and a list of suggestions and tools for staff and others who want to make public the violations of rights in institutions, human service agencies, businesses, and governments. 

Newspaper clipping of article entitled The Constitution v the snakepit transcript.txt

Newspaper clipping: Inside an Institution

This artifact is a photograph from a newspaper story that provides a snapshot of a moment in an institution. In this photograph there is a naked child sitting on the floor, with his head on his arms, which are crossed over his drawn up knees, and to the left of the photo, almost out of the frame, is what appears to be a naked person standing up. This photograph demonstrates in part why the Willowbrook case happened and why whistleblowers are so important. 

Photocopy of New York Times clipping Justices Rule Retarded Have Right to Training transcript.txt

Justices Rule Retarded Have Right to Training: Youngberg v. Romeo

This artifact is a 1982 New York Times article that addressed the newspaper article discussing a case, Youngberg v. Romeo, that focused on the right to treatment and freedom from restraints for people with intellectual and developmental disabilities. This case stemmed from when Nicholas Romeo, a man assessed to have profound intellectual disability, was involuntarily committed to the Pennhurst State School and Hospital, after his father died and his mother could no longer care for him. While in Pennhurst Romeo was abused and physically restrained for much of the day, for his aggressive behavior according to staff at Pennhurst, for nine out of the eleven months he was in the institution. Nicholas’ mother filed the lawsuit against Pennhurst on behalf of her son in 1976 (the case was decided in 1982). The state of Pennsylvania argued that providing Nicholas with food, clothing and shelter was enough to not violate his constitutional rights. However, the Supreme Court ruled that people with disabilities in state institutions are constitutionally entitled to safe conditions, freedom from unreasonable physical restraint and at least minimal training to ensure his safety and function free from restraint. This eventually led to Pennhurst shutting down after other instances of abuse and neglect had been occurring for years. This led to even more institutions having to close down permanently.

Halderman v. Pennhurst / Pennhurst v. Halderman

The Halderman v. Pennhurst case (1977) represents a pivotal moment in the deinstitutionalization movement, which aimed to transition individuals with disabilities out of large, often abusive institutions and into community-based settings. In the first case the federal court ruled that inmates of Pennhurst had been abused, that the conditions were inhumane and dangerous, and that Pennhurst administered cruel and unusual punishment, violating the Eighth and Fourteenth Amendments. The court also ordered the institution to close. In an appeal (Pennhurst v. Halderman, 1981), the Supreme Court ruled that under the Eleventh Amendment, state officials could recommend, but not force a state entity to obey state laws, so they could not order the closure of the institution. Six days after the Supreme Court decision, Burton Blatt sent a memorandum to folks affiliated with the Center on Human Policy to hold a brainstorming session to talk about the potential consequences of this ruling and how to mitigate the impact of the decision. The Supreme Court's ruling in this case could have held back the progress of deinstitutionalization efforts, but Pennhurst closed in 1987.

Front cover of Understanding the law

Understanding the Law

In the handbook Understanding the Law: An Advocate's Guide to the Law and Developmental Disabilities (1979), authors Doug Biklen and SU sociology doctoral student Steve Taylor (who would join the faculty of the SU School of Education in 1979 and become the director of the Center on Human Policy in 1983, a position he held until his passing) provide advocates with a glossary of legal terms; an explanation of the legal system and the stages of litigation; summaries of key cases, including the Willowbrook and Pennhurst cases, and how to research law and build cases, essentially a “how to” to use the law as a mechanism for change.

Pennsylvania Association for Retarded Children (PARC) v. the Commonwealth of Pennsylvania

The legacy of Brown v. Board of Education is evident in the PARC case (1971). The plaintiffs in this case claimed that their children with intellectual and developmental disabilities, classified as “uneducable and untrainable,” were denied a public education due to their disabilities. The court ruled that in fact the plaintiffs’ due process clause of the Fourteenth Amendment rights were violated and that children with disabilities could not be denied equal access to education. Burton Blatt was an expert witness in this case, and his testimony was crucial to the settlement of the case. In late 1971, both parties entered into a consent decree that required the state to place all students with intellectual and developmental disabilities in a public education setting. This case was foundational to the principles of the Education for All Handicapped Children Act (PL 94-142); the PARC decision directly impacted the law in the codification of the right to a Free Appropriate Public Education (FAPE) and zero reject, that children cannot be excluded from school based on disability status. 

In October 1976, the plaintiffs filed another complaint that the consent decree was not being enforced. This artifact, a January 1976 letter from Burton Blatt, an expert witness in the original case, to the director of PARC, demonstrates Blatt’s thoughts on due process guarantees, and psycho-educational assessments related to the case. One might surmise that they were preparing for the October 1976 consent decree challenge.

Larry P. V. Riles Court Case

The legal case Larry P. v. Riles (1971, settled in 1979) shows a shift from using an standardized individual intelligence (IQ) test as a sole evaluation method for the placement in special classes. The case challenges the placement process within special classes for the “educable mentally retarded,” in particular the harm of only using the IQ test to determine disability identification and placement. The case demonstrated the importance of using multiple tools of assessment to determine disability identification and placement. In California, the Plaintiffs in the case represent the Black children who were wrongfully placed within the classes based on their minoritized identities by the means of a biased IQ test. When placed in the special classes, Black children are given an inadequate education that limits their opportunities to access an equitable education and demonstrate their ability to learn. Burton Blatt was asked to testify in the case, and in 1977, Doug Biklen encouraged Blatt to testify in the case, noting its national importance; however there is nothing in the archives or case files that indicate that Blatt did testify. The decision in this case banned the use of IQ tests on Black children, but a 1995 lawsuit, Crawford v. Honig, affirmed the use of IQ tests on Black children only if the parents gave their consent.  

McCarthy School Correspondence Between Hall and Biklen

Although this is not a court case, these artifacts, a 1976 letter exchange between Viola Hall, the principal of the McCarthy School, and Doug Biklen, associate director of the Center on Human Policy, reflect the tensions around inclusion that existed after the passage of the Education for All Handicapped Children in 1975 and in the two cases addressed above. Albert Brown, a doctoral student, was part of a CHP team that worked on a review, "A Look At Vocational Education Services in the Syracuse Area." One of the vocational education programs the team reviewed was the vocational education program at the McCarthy School for Retarded Children. Hall disagreed with how Mr. Brown represented the program, including the critique of the segregated nature of the program, as evidenced by her statement, “... you may have a prejudiced mind and want to prove that normalization and integration are the going things for every child, and you have your right to your opinion.” Biklen’s response focused on his assessment of Mr. Brown’s report, saying, I am completely convinced that he has attempted to produce a balanced document. Obviously he was more interested, as he should be, in developing helpful recommendations than in simply praising the considerable progress that you have made.” VIola Hall retired in 1978, and by 1981, students with intellectual and developmental disabilities were integrated into regular schools and McCarthy became a school for students labeled with emotional disturbance and remains so when this was written in 2024.