Where We Put People: Sharing some stories about where we house our disabled adults in America

From the newsletter:

Looking back at his time at Willowbrook State School — the now closed institution for individuals with intellectual and developmental disorders on Staten Island — Marco Damiani told me that he’ll never forget the smell. 

“There was no smell like it. Those buildings had a unique odor. It was memorable. It hardened me,” Damiani said. 

Subject of a career-making exposé by Geraldo Rivera in 1972, the world got a look at the inhumane conditions at Willowbrook, where as many as 6,000 children and young adults with intellectual and developmental disabilities were warehoused in a building that was designed for 4,000. Naked, abused, neglected, the children were even the subjects of medical experiments. Some compared conditions at Meadowbrook to a concentration camp.

A young college graduate, Damiani brought some of the clients back to offices in Greenwich Village to work on vocational training. Damiani, now the CEO of the non-for-profit AHRC in New York City, said that when he began working there in the late 1970s, some reforms had already been put in place, so it wasn’t quite the “snake pit”that it used to be. But like the lingering smell in the hallways, the legacy of abuse and neglect still hung over the institution until it closed its doors in 1987. 

Eventually all large institutions in New York, like Willowbrook, were replaced by smaller facilities across the state. But a smaller size does not seem to stop the harsh treatment of disabled people. Abuse still happens in those smaller homes, as the New York Times reported last year. 

Earlier this month, David Axelrod, Obama’s former political advisor, wrote an op-ed in the New York Times about where his daughter, Lauren, lives. Lauren has intellectual disabilities due to a seizure disorder. After high school, the Axelrod’s found a community on the Northside of Chicago for their daughter, Misericordia, where Lauren has found happiness and independence. 

“Lauren shares an apartment with two other women in a bustling dormlike setting on a pleasant, leafy campus. She and her friends walk to nearby shops and restaurants. She has vocational activities and jobs on campus and off, which have given her a sense of worth and responsibility. She sings and signs in a choir, takes art and cooking classes, and hits the fitness center or pool every day.

While she has the care and supervision she continues to need — and always will — she also is more independent than we ever could have hoped.

Most of all, she is happy. Genuinely happy.”

However, Lauren’s happiness is threatened by changes in the Medicaid laws, which wants to close down places like Misericordia, because of the dogmatic belief, Axelrod said, that larger communities are all abusive, and neighborhood-based groups are best. Larger group homes have also not received their fair share of emergency COVID money. 

Axelrod said that his daughter thrives on the constant activity and dorm-like settings in her home. It’s wrong to paint all large living environments with the Willowbrook brush. 

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Last spring, as COVID rates soared, the homeless were moved from group living shelters into hotels in downtown Manhattan. With the infection rates down, the city wants to move 8,000 homeless people out of those hotels and back to the shelters in the furthest corners of the city. The homeless don’t want to leave

Mike Roberts, one of the men being forced to return to the shelters, described the living arrangements there. From the New York Times:

“He sleeps in a room with seven or eight cubicles that each house three or four men. If he reaches over from his bed, he can touch the next one.

Unlike his room at the Lucerne, the one at the shelter has no air conditioning. Mr. Roberts often awakens in the middle of the night drenched in sweat, and he cannot go for a walk because if he leaves the shelter between 10 p.m. and 5 a.m., he loses his bed. Needless to say, his room also does not have a private shower or a television.

“Here, when I wake up I’m in a cubicle,” he said. “It’ll be three people around me sleeping, one snoring, one probably getting high or a guy pacing the floor. Who wants that?”” 

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Over drinks at a mutual friend’s house for Greek Easter, John told me that he and his wife, Jane, were not ever planning on downsizing their home, like other retirees. “After all, James will always be with us.” 

Carol, who was the hostess that night, showed us around her new bi-level. They had recently bought a home in a more affordable town. One of the features of the home was a separate entrance to a downstairs area with a kitchenette, large room, and a bathroom. Carol hopes that Robert can have some independence with that apartment-like set up in her home some day. 

At age 20, both James and Robert attend a program for young adults with autism that is funded by the public schools. In another year, those programs will end, and their parents will have to piece together various day programs and structured work opportunities to keep the young men busy during the day. With the lack of housing options for adults with disabilities, the parents know that James and Robert will live in their spare bedrooms and basements for decades. 

There’s a 10-20 year wait for housing for people with disabilities in New Jersey. And what exists doesn’t look like the dorms or campuses that my college kid enjoys. Instead, towns allocate an apartment here or a condo there to disabled people. In those spaces, disabled people live alone or with a roommate amidst typical people, who don’t like to talk about trains or Pixar movies. There are no organized activities or friends with similar interests. When the individuals aren’t at a day program, then they are in those apartments alone with nothing to do. 

Hating the idea of their adult children sitting alone in apartments, middle class parents keep them at home until the parents are too old to care for them anymore. The waitlist problem means that they really don’t have too many other options anyway. 

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Of course the wealthy have better housing options for their disabled family members. But I’m still researching all that, so more on that another time. Related: Canada’s terrible residential schools for Indigenous children.