The smell. That’s what stayed with Geraldo Rivera the longest. When he hopped over the fence of the Willowbrook State School in 1972 with a camera crew in tow, he wasn't just breaking into a building; he was breaking open a national secret that nobody wanted to look at. Fast forward to Willowbrook 25 years later, and the landscape of disability rights had shifted so violently it was almost unrecognizable from that original footage of naked children huddled on floor tiles.
But progress isn't a straight line. It's messy.
By the mid-1990s, the physical institution was gone. It had been officially shuttered in 1987, but the echoes of what happened there—the overcrowding, the hepatitis experiments on children, the "snake pit" conditions—remained the primary catalyst for the Civil Rights of Institutionalized Persons Act (CRIPA). If you look at the state of care a quarter-century after that initial exposé, you see a world trying to atone for its sins while simultaneously struggling with the logistics of actual humanity.
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The ghost of the 1972 exposé
You’ve probably seen the grainy, flickering clips. Rivera’s voice cracking as he describes the "horrible smell of decay." It changed everything. In the early 70s, Willowbrook was the largest state-run institution for people with intellectual disabilities in the world. It was designed for 4,000 people. It held over 6,000.
Think about that.
By the time we hit the 25-year milestone following the main legal battles, the shift from "warehousing" to "community-based living" was the new gospel. The 1975 Willowbrook Consent Decree was the legal sledgehammer. It mandated that residents be moved into small group homes. It was a beautiful idea. Honestly, it was the only moral choice. But as the 90s rolled around, the reality of "deinstitutionalization" started to show some cracks that the activists of the 70s hadn't fully anticipated.
Some people thrived. Others were lost in a different kind of shuffle.
What changed by the 25-year mark?
If you were looking at the system in the late 1990s, the biggest change was the Americans with Disabilities Act (ADA) of 1990. It was the direct descendant of the Willowbrook outrage. Without the public disgust generated by the Staten Island facility, it’s hard to imagine the political will for the ADA being quite so strong.
The 1999 Olmstead v. L.C. Supreme Court decision was the real "anniversary" capstone. It ruled that unjustified segregation of people with disabilities is a form of discrimination. This was essentially the final nail in the coffin for the Willowbrook model. It said, "You can't just keep people in a basement because it's easier for the state."
The Rise of the Group Home
Instead of one massive, rotting building, New York and other states moved toward the "Group Home" model. Small residential settings. Four to six people. A backyard. A kitchen that smelled like actual food instead of industrial disinfectant.
It wasn't perfect, though.
Money followed the buildings, not always the people. In the 90s, the "Willowbrook Class"—the actual individuals who survived the institution—were aging. Many had profound medical needs. Moving them from a centralized hospital-style setting to a house in a suburb meant that the local doctors suddenly had to become experts in complex developmental disabilities. Most weren't.
The hepatitis experiments: A dark medical legacy
We can’t talk about this without mentioning Saul Krugman. He was the researcher at Willowbrook who deliberately infected children with hepatitis to track the virus. His argument? They were going to get it anyway because the place was so filthy.
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Twenty-five years later, the bioethics world was still reeling from this. It led directly to the National Research Act and the creation of Institutional Review Boards (IRBs). Today, if a scientist even thinks about a study like that, they’d be laughed out of the room—or arrested. Willowbrook turned patients into lab rats, and the resulting backlash basically created the modern framework of "informed consent."
It’s a heavy price to pay for a standard of ethics.
The human cost of "better" care
Honestly, the transition wasn't all sunshine.
While the majority of the Willowbrook Class saw their quality of life skyrocket, some advocates in the late 90s noticed a new problem: social isolation. Being in a house on a quiet street isn't the same thing as being part of a community. If you're in a house but you never leave it, are you still "institutionalized" in a different way?
The 25-year mark was when we started realizing that "community placement" required more than just a zip code change. It required jobs. It required accessible transit. It required neighbors who didn't petition the city to keep "those people" off their block.
Key figures who kept the pressure on
- Bernard Carabello: A former resident who was misdiagnosed and spent 18 years there. He became a massive advocate for self-advocacy.
- Elizabeth Chase: One of the original doctors who blew the whistle.
- Michael Wilkins: Another whistleblower who risked his career to let Rivera in.
Why the memory of Willowbrook still burns
You might wonder why we keep bringing up a place that’s been closed for decades. It's because the "Willowbrook mindset" is a zombie. It keeps trying to come back. Every time a state tries to cut funding for home-based care or "consolidate" services into larger, cheaper facilities, the ghost of Willowbrook starts rattling its chains.
The 1972 footage serves as a permanent baseline of how bad things can get when we stop seeing people as human.
By 1997—twenty-five years after the exposé—the conversation had moved from "how do we stop them from starving?" to "how do we help them vote?" That's a huge leap. But it’s a leap that requires constant maintenance. The "Willowbrook Class" members were still being monitored by the courts well into the 2000s because the state had proven it couldn't be trusted to police itself.
Reality check: The staffing crisis
One of the biggest hurdles that became apparent by the late 90s was the workforce. You can have the best intentions in the world, but if the people working in the group homes are paid minimum wage and have no training, the care suffers. Willowbrook failed partly because of understaffing. The community system often flirts with that same danger.
Direct Support Professionals (DSPs) are the backbone of the system. In the 25 years following the closure, the demand for these workers exploded, but the pay didn't. This created a high turnover rate. For a person with a disability, having a different stranger walk into your bedroom every three months to help you get dressed is its own kind of trauma.
Lessons that stuck (and some that didn't)
The 25-year retrospective showed us that visibility is the only real protection. When the doors are locked and the windows are painted over, bad things happen.
- Transparency is non-negotiable. The moment a facility becomes "closed to the public," the risk of abuse triples.
- Litigation works. The Willowbrook Consent Decree proved that you can sue the government into doing the right thing, even if they kick and scream the whole way.
- Language matters. We stopped saying "retarded." We started saying "intellectual disability." This wasn't just about being polite; it was about shifting the medical focus from a "defect" to a person with rights.
The actual physical site today
If you go to Staten Island now, you'll find the College of Staten Island (CSI). It’s beautiful. Green grass. Students with backpacks. But there are plaques. There are markers. Some of the old buildings still stand, repurposed into classrooms. It’s a surreal feeling to walk through a hallway where someone once slept on a floor in their own filth, knowing that now someone is sitting there learning about sociology or biology.
Actionable insights for the modern day
We can't just look back; we have to look at what's happening right now. The legacy of Willowbrook isn't just a history lesson; it's a blueprint for current advocacy.
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- Support the DSP workforce: If you want to prevent a "modern Willowbrook," advocate for higher wages for caregivers. Stable staffing equals stable lives.
- Prioritize self-advocacy: The most important lesson from the 90s was that people with disabilities should be at the table. "Nothing about us without us" is the mantra. If a policy is being made, the people affected by it should be the ones talking.
- Watch the numbers: Overcrowding is usually a slow creep. Keep an eye on local facilities. When "efficiency" starts being used as a justification for larger residential sizes, red flags should go up.
- Check the bioethics: Ensure that any medical research involving vulnerable populations has rigorous, independent oversight. We can never allow the "they’re going to get it anyway" logic to return to medical science.
- Visit and engage: The best way to ensure a facility is safe is to have a constant stream of visitors, volunteers, and family members. Isolation is the precursor to abuse.
Willowbrook changed the world because it was so undeniably horrific that no one could look away. Twenty-five years later, the challenge became not looking away from the much quieter, much more subtle problems of the community-based system. We traded the "snake pit" for a complex, underfunded, but ultimately more human network of care. It’s a trade we’d make every single time, but it’s one that requires us to stay awake.