Advocates Rally for Disabled Rights 50 Years After Willowbrook Lawsuit

The legacy of the Willowbrook State School continues to resonate in the ongoing fight for the rights of people with disabilities. Although the facility closed in 1987, advocates gathered on October 27, 2023, at the historic First Department courthouse in Manhattan to commemorate the 50th anniversary of the landmark civil rights lawsuit that aimed to protect these vulnerable individuals. The event, hosted by the New York Appellate Division, First Department, highlighted the ongoing challenges in securing adequate funding and care for people with intellectual disabilities.

Willowbrook, located on Staten Island, was established to provide medical and rehabilitative care for approximately 6,000 children and adults with intellectual disabilities. However, by the late 1960s, it became notorious for overcrowding and neglect, leading to widespread public outcry. The class action lawsuit, led by the late Murray Schneps, resulted in the 1975 Willowbrook Consent Judgment, which mandated improved care and ultimately forced the closure of the institution.

During the panel discussion, Victoria Schneps, co-publisher of amNY Law, spoke passionately about the enduring fight for funding. Her daughter, Lara Schneps, was a plaintiff in the original lawsuit. “We are still in a war,” she stated, referring to the ongoing underfunding that has left many facilities understaffed and continues to contribute to the neglect seen at Willowbrook. To combat these issues, she founded the nonprofit organization Life’s WORC, which provides comprehensive services for individuals with disabilities.

The panel also featured Beth Haroules, an attorney with the New York Civil Liberties Union focused on justice for disabled individuals. She noted that the Willowbrook case had far-reaching positive impacts across the United States and beyond. Describing the facility as a “human warehouse,” William Bronston, a former physician at Willowbrook, detailed the violence and squalor that plagued the institution. These conditions were brought to light through investigative reporting, including a significant broadcast by Geraldo Rivera in 1972.

Despite the progress made since the lawsuit, panelists warned that bureaucratic failures and chronic underfunding threaten to undermine the advancements achieved. Haroules emphasized that funding issues pose serious challenges for care facilities, particularly as federal Medicaid funding faces increasing scrutiny.

Housing remains a critical concern for individuals with intellectual and developmental disabilities. Leonard Simmons, an attorney with Mental Hygiene Legal Service, explained that many clients with a legal right to community housing find themselves confined in psychiatric units for extended periods. “You have clients who are just waiting for a home and can spend over a year without seeing the light of day,” Simmons lamented, highlighting the urgent need for better support systems.

The low wages for care workers also contribute to the ongoing issues within the system, according to Marco Damiani, CEO of AHRC NYC. He linked inadequate government funding to a lack of respect for the lives of individuals with disabilities, suggesting that higher wages could reflect a greater societal value placed on this population.

The panel concluded with a call for renewed commitment from state government to uphold the legal rights established by the Willowbrook case. Henry Kennedy, the panel’s moderator and an attorney at Willkie Farr & Gallagher LLP, emphasized that the story of Willowbrook is not solely a historical account but remains a pressing issue for the future. “It is very much about tomorrow,” he stated, urging continued advocacy for those still at risk today.