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The Parents’ Movement for Deinstitutionalization and School Access
From the 1850s on, residential institutions for people with intellectual and developmental disabilities became widespread in New York and the United States. Many parents sent their children to these state schools, hoping they would be rehabilitated and come home. Other parents needed help and support to care for children who could not handle their own care needs. Once they moved in, many people never left these institutions.
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Willowbrook State School in Staten Island was built just before World War II, but it was used as an army hospital during the war. It was the largest school of its kind when it opened in 1947. Willowbrook was originally designed to house a maximum of 4,000 residents, but held 6,200 residents at its maximum. New York Senator Robert F. Kennedy, whose sister Rosemary had an intellectual disability, visited the school in 1965. He described it as a “snake pit,” and said that residents were suffering due to a “lack of attention, lack of imagination, lack of adequate manpower.”1
Families with financial means had the option of keeping their children home, but those children were often excluded from schooling, especially after intelligence testing became common practice. In the late 1940s, parents around the country started organizing for access to public education for their children. Local organizations like the Association for the Help of Retarded Children (AHRC) (which was a New York chapter for the national Association for Retarded Children or ARC), and the Benevolent Society for Retarded Children (which was the parents’ association at the Willowbrook State School) were founded in 1948 and 1949. These groups were made up of mostly middle and upper class white parents, many of whom wanted to create their own day programs to educate their children who were living at home. They also lobbied for better conditions and more funding for state institutions.2
Due to overcrowding, Willie Mae Goodman’s daughter, Marguerite, was moved out of Willowbrook to Gouverneur Annex in lower Manhattan. She believed that Marguerite had been sent to the other facility because Willowbrook officials didn’t think she would live very long. Mrs. Goodman pushed for decent care and education for Marguerite at Gouverneur for decades.
The parents’ movement helped lead to the 1975 “Education for All Handicapped Children Act,” now called the IDEA (Individuals with Disabilities Education Act). These laws established for all children, disabled and non-disabled, a right to a “free appropriate public education.” The law requires that schools provide educational support for every child through “individualized education programs” (IEPs) that consider their specific needs. But New York City did not immediately provide these services to all children. Instead, a group of parents had to bring a lawsuit to make New York City schools respect the rights of Disabled students as set out in the law.3 Their lawsuit was successful, but challenges remain. In the nearly five decades since IDEA, parents have continued to fight to ensure equal educational access and educational justice for their children.
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“Robert Kennedy Visiting Institutions in NY,” accessed July 24, 2023, https://mn.gov/mnddc/parallels/five/5b/bobby-kennedy-snakepits.html. ↩︎
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Keith Mayes, The Unteachables: Disability Rights and the Invention of Black Special Education (Minneapolis: University of Minnesota Press, 2023). ↩︎
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Jose P. v. Ambach, Judgement, December 1979, US Circuit Court for the Eastern District of New York, https://www.advocatesforchildren.org/sites/default/files/on_page/jose_p_judgment_december_1979.pdf?pt=1. ↩︎
