Willowbrook, 1972-1993: from exposé to lifelong rights

In 1972, parents of people living at New York's Willowbrook State School sued the state in federal court. Three years later, Judge Orrin G. Judd approved a consent judgment that set detailed rules for care, required the Staten Island institution to shrink, and pushed New York toward community homes. Willowbrook closed in 1987. A 1993 permanent injunction still protects the people who lived there, and that protection lasts for the rest of their lives.

This part of the series follows the court record from the first complaint to the injunction New York providers work under today. It draws on Judge Judd's 1973 and 1975 opinions, the injunction itself, the New York State Archives and the state Office for People With Developmental Disabilities (OPWDD).

Today the term is intellectual disability. This story uses older wording only in names, case titles and quotes from the record.

Too many people in the wrong place

Willowbrook was a military hospital during World War II before New York turned it into a state school, according to the New York State Archives. Minnesota's Governor's Council on Developmental Disabilities says it was designed for 4,000 people and held more than 6,000 by 1965, making it the largest state-run institution for people with developmental disabilities in the world. That year, Sen. Robert F. Kennedy toured it and publicly likened it to a snake pit, according to OPWDD.

The State Archives adds two facts that are often left out of the story. Willowbrook had the highest share of Black and Hispanic residents of any New York state school, and it was the only one that admitted children under 5.

The reporting that made people look

Jane Kurtin of the Staten Island Advance wrote a years-long series about conditions at Willowbrook in the 1970s, according to a 2025 release from Gov. Kathy Hochul's office. Her coverage caught the attention of Geraldo Rivera, then an investigative reporter at WABC-TV. A Willowbrook physician who had been fired after pushing for change contacted Rivera, the Minnesota council says. Bernard Carabello, who lived at Willowbrook, let Rivera and his camera crew into the building.

The station's 1972 report, "Willowbrook: The Last Great Disgrace," won a Peabody Award. Carabello later founded the Self-Advocacy Association of New York State, and the College of Staten Island has reported that he spoke about being put in a straitjacket and sedated while he lived there. He and Rivera have stayed friends ever since, OPWDD says.

The lawsuit and the 1973 findings

The New York State Association for Retarded Children and parents filed suit on March 17, 1972, on behalf of more than 5,000 residents. Judge Judd certified it as a class action that July.

In April 1973, he issued a preliminary injunction. His findings read like a staffing report:

• Who lived there. On Dec. 10, 1972, Willowbrook had 4,727 residents in about 43 buildings, down from 6,200 in 1969. More than three-quarters had the most significant disabilities, about a third had seizures, and more than half had lived there for 20 years or longer. Only 27% had been admitted at a family's voluntary request.
• Who worked there. A state hiring freeze ran from December 1970 to November 1971. Attendant turnover was almost 40% a year, compared with 18% for other staff. Dayrooms often had 15 or more residents for each attendant, and Willowbrook had about half the physicians it needed.
• What happened as a result. More than 1,300 injuries, assaults and fights were reported in eight months of 1972. Parents testified about a lost eye, broken teeth and part of an ear bitten off. About 750 repair orders were waiting, and at least one toilet was broken in every living unit.

The state argued that hiring more attendants could not fix the problem of staff who did not show up for work. Judge Judd answered: "The court cannot accept such a confession of administrative failure."

He did not find a federal right to treatment. Instead, he found that residents had a constitutional right to protection from harm and were owed at least the living conditions given to prisoners. He banned seclusion and ordered a ratio of at least one staff member for every nine residents during waking hours for people with the most significant disabilities. He also ordered 85 more nurses, 30 physical therapy staff, 15 physicians, recreation staff, toilet repairs, a contract with an accredited hospital and regular reports to the court. Protection, he wrote, had to cover weekends too, even if that meant substitute pools or weekend pay differentials.

A research scandal on the same grounds

Starting in the 1950s, Dr. Saul Krugman led hepatitis studies at Willowbrook in which children were deliberately infected so researchers could study the disease and work toward a vaccine. A case study by James M. DuBois, published by the Bioethics Research Center, notes that critics later said letters asking parents to consent played down the risk. At times, the only open beds for new admissions were on the research unit. The studies are still taught as a lesson in why consent from people with disabilities and their families must be real and free of pressure, much like the Fernald studies covered in Part 5 of this series.

The 1975 consent judgment

The parties then negotiated a settlement, with help from the U.S. Justice Department's Civil Rights Division. Judge Judd approved it as a final judgment on consent on May 5, 1975. No one objected at the hearing.

Its appendix of "Steps, Standards and Procedures" ran 29 single-spaced pages and covered 23 areas of care, with many steps due within 13 months. The judge wrote that these "are not optimal or ideal standards, nor are they just custodial standards." He also said protection from harm includes protection from conditions that cause people to lose skills.

The judgment did more than fix the institution. It required New York to build a range of community services and to cut Willowbrook to 250 beds or fewer within six years. It set up a review panel and a professional advisory board to oversee the work, along with a consumer advisory board. According to OPWDD, the state created a separate agency for developmental disabilities in 1978 to carry out the decree. That agency became today's OPWDD.

Closing the doors, keeping the promise

A 1987 stipulation set limits on the size of community homes and a timeline for moving people out. Gov. Mario Cuomo declared Willowbrook closed for good on Sept. 17, 1987. The decree also led New York to close 19 more institutions in favor of community residences, according to the governor's office.

The court's oversight ended with a permanent injunction, which OPWDD dates to 1993. It replaced the consent judgment and closed the court's special master office on March 31, 1993. It says members of the class, known as the "Class of 1972," must get high-quality community services for the rest of their lives. It limited facilities on the old Willowbrook grounds to 150 people in all and called for homes of 10 beds or fewer where a person's planning team recommended it. A class member cannot be moved without 30 days' written notice and the chance for a hearing. The State Archives notes that monitoring could continue into the 2040s.

Why this matters for providers and DSPs

• The rules are still in force in New York. OPWDD says the permanent injunction is the current standard for every class member. A notice of their rights must be kept in the permanent record held by each provider agency that serves them, including residence and day program files and the service coordination record.
• Capacity and moves need care. Certified programs serving class members must stay within their designated capacity, and any increase needs approval from the Willowbrook attorneys, OPWDD says. If someone you support may move, check with your frontline supervisor or supports coordinator about the notice the injunction requires.
• Staffing was the case. The judge tied the harm at Willowbrook to too few staff, high turnover and no weekend coverage. Those same problems still shape whether a group home is safe.
• Some people you support lived this history. Class members are now middle-aged or older. Ask before raising the past, and follow their lead.

Part 9 of this series turns to Alabama and Wyatt v. Stickney, the case that led a federal court to write minimum standards for care in state institutions.