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Willowbrook State School's Horrific History

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Willowbrook State School's Horrific History

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Willowbrook State School, a large Staten Island facility and the most significant state school for disabilities at that time, opened in October of 1947 on 375 acres to house mentally disabled patients from upstate institutions. This facility quickly became overfilled and understaffed; by 1955, it reached a total capacity of 4,000 occupants. The mentally disabled living at the facility were neglected, infected with disease, sexually assaulted and abused, and living in deplorable conditions. Many patients died from measles and hepatitis outbreaks. "In some buildings, the mentally disabled were left to huddle in rooms, moaning, fidgeting, meandering, all with little care or resources. Many went naked for lack of clothing and supervision. Others sat drenched in their urine and feces, and some smeared them on the walls and their clothes, with no available garments to replace them." 60% of the patient population were not toilet-trained, and 64% were incapable of feeding themselves. There was barely any educational structure, and when teaching did happen, it was only for a handful of cooperative students for about 2 hours a day. By 1969, Willowbrook was packed beyond capacity with 6,200 patients and was considered the largest mental institution in the United States. Illegal tests and studies were performed on students/patients. Dr. Saul Krugman was working on a treatment for hepatitis and began infecting patients with hepatitis without their own or their guardian's knowledge to help further his research.

Senator Robert Kennedy visited Willowbrook and announced his findings to the American public. He stated, "Speaking of systemic failures in mental health care, "I've visited the state institutions for the mentally retarded, and I think particularly at Willowbrook, we have a situation that borders on a snake pit." Unfortunately, this was not enough to sound the alarm for action until seven years later, when print journalist Jane Kurtin and news reporter Geraldo Rivera covered the story. They snuck into the facility with a camera, filmed the unspeakable conditions, and aired the footage on national television. This exposè led to the decommissioning of Willowbrook and influenced policies engineered to protect the disabled. For example, the Protection and Advocacy System of the Developmental Disabilities Assistance and Bill of Rights Act and the Education For All Handicapped Children Act passed in 1975, along with the Civil Rights of Institutionalized Persons Act of 1980. These acts led the way for the foundation of the 1990 Americans with Disabilities Act (ADA) that has shaped the education system today.

https://timeline.com/willowbrook-the-institution-that-shocked-a-nation-into-changing-its-laws-c847acb44e0d

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In 1975, a Consent Judgment was entered in the 1972 Willowbrook lawsuit ordering that Willowbrook residents receive humane treatment and adequate clinical and educational services. This judgment eventually led to Willowbrook’s closure in 1987 and set the development of community-based services in motion. Monumental changes were made in the treatment of individuals with disabilities after the atrocities at Willowbrook. Individuals with disabilities were placed in community residences, volunteer agencies grew exponentially, special education and daycare programs were facilitated, and specialized training of direct-care workers, therapists, teachers, and administrators began. This coincided with the 1975 Education for All Handicapped Children Act.

https://www.csi.cuny.edu/about-csi/president-leadership/administration/office-vp-economic-development-continuing-studies-and-government-relations/reporting-units-and-initiatives/willowbrook-mile/about

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The Individuals with Disabilities Act (IDEA)

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The Individuals with Disabilities Act (IDEA)

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Geraldo Rivera’s exposè on the horrific conditions at Willowbrook State School shifted the country’s focus to improving the treatment of those with disabilities. Equal education became a necessary component of humane treatment. In 1975, Congress passed the Individuals with Disabilities Education Act (IDEA). The IDEA requires public schools to provide accommodations and individualized plans to promote the success of students with disabilities and to include these students in the traditional classroom as often as possible (least restrictive environment).

https://rootedinrights.org/special-education-a-hindrance-to-disability-acceptance/

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The Developmental Disabilities Act of 1963, The Developmental Disabilities Assistance and Bill of Rights Act of 1975, and the Civil Rights of the Institutionalized Persons Act of 1980 were all put into place after the tragic events at Willowbrook were unveiled to the public. This legislation was enacted to protect the rights and lives of individuals with developmental and intellectual disabilities. In addition, the state of New York has also introduced an NYS Justice Center in 2012, designed “to protect the health, safety, and welfare of vulnerable New Yorkers,” with special accommodations made for the survivors of Willowbrook.

https://sites.bu.edu/daniellerousseau/2017/04/24/people-with-disabilities-willowbrook-and-trauma/

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Senator Robert Kennedy described Willowbrook as “A snake pit,” Geraldo Rivera smuggled cameras in to show the public the atrocities that lie inside. The topic gained considerable notoriety after influential figures such as Kennedy and Rivera brought it to light by broadcasting nationwide, inspiring the state’s senior senator, Jacob Javits, to create the Protection and Advocacy (P&A) network. The Americans with Disabilities Act (ADA), the National Disability Right Network, and the Protection and Advocacy network were established after Americans could see the filthy, inhumane conditions at Willowbrook. These broadcasts influenced protection and advocacy networks to ensure the safety and independence of people with disabilities and safeguard the well-being of individuals living in institutions like Willowbrook nationwide. Congress has given P&A agencies the authority to provide legal representation and other advocacy services to all people with disabilities. Additionally, P&As create resources ensuring full access to inclusive educational programs, entitlements, healthcare, accessible housing, transportation, voting, and competitive and integrated employment opportunities. They have also been at the forefront of the deinstitutionalization movement.

https://acl.gov/news-and-events/acl-blog/protection-and-advocacy-foundation-disability-rights

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After the nation became privy to the atrocities at Willowbrook and the facility shut down in 1987, positive initiatives to change living situations for people with disabilities began. Interest and awareness of people with disabilities were generated because of Willowbrook's national attention, and people began to regulate living arrangements for individuals with disabilities in communities with family and friends. Community-based settings (group homes) became monitored by state agencies and planned, independent living communities are becoming popular options for individuals with developmental disabilities. After Willowbrook, disability advocacy and self-advocacy increased. In addition, educational programs, activities, and community inclusion are now all mandated by regulators for residents on the Medicaid waiver in all types of living situations.

https://www.flsand.org/single-post/2018/03/20/willowbrook-and-the-lessons-we-must-never-forget

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“The Hungerford faculty celebrated their school’s 50th anniversary on April 1 by remembering that shameful history and reflecting on the transformation since their school’s founding in the treatment and education of people with special needs.” Although The Staten Island Advance reported on it and Senator Robert Kennedy demanded improvements, Geraldo Rivera’s exposé of Willowbrook on Channel 7 was the catalyst that helped fast-track improvements to education for special needs. He began his report with, “Tonight, as a public service, we are going to make you sick.” This exposé humiliated America and forever changed the treatment of children requiring special education. This change included the development of occupational training centers like Hungerford that help children get a job that fits their abilities and other protections and legislation, including the Americans with Disabilities Act in 1990.

https://www.uft.org/news/feature-stories/how-far-weve-come

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The Americans with Disabilities Act (ADA)

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The Americans with Disabilities Act (ADA)

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The improvements to education that followed the unveiling of the criminal conditions of Willowbrook State School led to the foundation of the Americans with Disabilities Act (ADA). The ADA ensures classroom accessibility (design, strategies, technology, communication tools, captioning) and inclusive education for children in grades K-12. In addition, the ADA requires that “reasonable accommodations” be made for students with disabilities and ensures that students with disabilities have equal opportunities in education. The Department of Justice enforces this act, and discrimination or lack of compliance can result in fines, loss of grants, legal action, and civil lawsuits.

https://www.rev.com/blog/ada-compliance-in-the-classroom

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While the details surrounding Willowbrook State School are horrific, the significance of its exposure is immeasurable. Willowbrook’s exposure led to exponential growth in disability advocacy and self-advocacy, positively changing the lives of individuals with disabilities forever. The nation was mortified by the horrific conditions and inhumane treatment of individuals with disabilities in a state institution. Rivera’s expose led to the decommissioning of Willowbrook and influenced policies engineered to protect the disabled. This has shaped the education system today and provided individuals with disabilities the right to equal opportunities and education.

The Willowbrook Consent Judgement (1975) ordered that Willowbrook residents receive humane treatment and adequate clinical and educational services. Willowbrook generated public awareness, volunteer agencies grew, special education and daycare programs were facilitated, and specialized training of direct-care workers, therapists, teachers, and administrators began. This surge of advocacy for individuals with disabilities also contributed to the development of The Developmental Disabilities Act of 1963, The Developmental Disabilities Assistance and Bill of Rights Act of 1975, The Education for All Handicapped Children Act of 1975, and The Individuals with Disabilities Education Act (IDEA). IDEA drastically changed the landscape of schools across the country. It provided special accommodations and IEP plans to promote the success of students with disabilities and include children with disabilities in traditional classroom settings. This began the era of inclusive education, allowing diverse groups to grow side by side, to the benefit of all.

The horrific history of Willowbrook also inspired other protective implementations. The State of New York introduced an NYS Justice Center (2012) designed to protect the health, safety, and welfare of vulnerable New Yorkers. Jacob Javits created the Protection and Advocacy (P&A) network to ensure safety and independence for individuals with disabilities. Additionally, Congress stepped in to grant P&A agencies the authority to provide legal representation and other advocacy services to all people with disabilities. P&As also create resources ensuring full access to inclusive educational programs, entitlements, healthcare, accessible housing, transportation, voting, and competitive and integrated employment opportunities and have been at the forefront of the deinstitutionalization movement.

Today’s education system and the improved quality of life and treatment for individuals with disabilities can be partly thanks to the explosive advocacy and national attention gained from Rivera’s Willowbrook expose. Community-based group homes, independent living communities, educational programs, and community inclusion are mandated. Schools like Hungerford offer occupational training that helps students get jobs that fit their abilities. The Americans with Disabilities Act (1990) and The Individuals with Disabilities Act (IDEA) have ensured that students with disabilities have equal opportunities in education. The ADA ensures classroom accessibility (design, strategies, technology, communication tools, captioning) and inclusive education for children in grades K-12. In addition, the ADA requires that “reasonable accommodations” be made for students with disabilities and ensures that students with disabilities have equal opportunities in education. The Department of Justice enforces this act, and discrimination or lack of compliance can result in fines, loss of grants, legal action, and civil lawsuits. While the history of Willowbrook State High is challenging to look at and remember, it is essential that we do. Remembering this horrific point in history ensures that we will not repeat it and will continue to advocate for individuals with disabilities.

https://www.unicef.org/education/inclusive-education