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.
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?””
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.
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.
Apt. 11d 
A family friend with Down syndrome lives at Misericordia. It is indeed a wonderful place, but out-of-towners might not realize that it is also highly unusual. Its director, Sr. Rosemary Connelly, is a genius, a fabulous fundraiser, and it has a parent support organization that raises even more money. Not a typical large institution, but one that should be replicated.
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Thanks for the info. If I keep doing this research, it might be worth going there to see what is going on.
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My cleaning lady (who is probably late 40ish/early 50ish) has bipolar and schizophrenia and spent a number of years growing up in “the state home.” I have no idea the backstory on how exactly she got a handle on her mental illness and managed to become the matriarch of a large extended family, a productive member of society and a pillar of her church community, but she did. Anyway, I wanted to mention that she said that they never had any Christmas in the state home. Presumably, no birthdays, either.
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Please please do.
I have other adult-child problems, but I have so many friends struggling with long term housing for their kids, including ones who have become violent. And even here in Massachusetts, our options are limited.
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Before the current epidemic, my mother has needed rehabilitative care to recover from pneumonia several times. She chose to return to one facility, because she liked the people and they liked her. It wasn’t anything spiffy, and in fact my aunt did not like that facility.
I noticed that during that time of worry that my mother’s roommates (it kinda alternated between hospital and care home) were either old dementia patients or…what surprised me…young people in their 20s who had had serious overdoses that had left brain damage, or maybe young adults with severe special needs, who could not be cared for at home? It was not a stimulating environment, but then most of the young patients were not energetic. To give you an idea–there was a simple code on the door alarm to prevent escapes.
And then a cousin by marriage has a daughter who is now in her 60s (guess), who is perhaps at the level of a 3 year old in mental functioning. She is large, strong, and impulsive. My cousin by marriage has been satisfied with the care her daughter has received from a Catholic care facility. Activities are available, although at one point her daughter was unhappy because the activities were shifted from kindergarten type arts and crafts–which she loves to do–to more “real world” activities, which made not much sense for someone who would be a danger to herself if left alone for any length of time.
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Misercordia looks like it was in my neighborhood when I lived in Chicago. Fascinating story about its history and the woman who founded it, Sister Rosemary. She’s 90 years old now and seems to have been a force in making the place.
Misercordia is solidly in urban Chicago, avoids the isolation that I think is one of the problems with institutions. The stories I hear, about schools, orphanages, mental health facilities, places for the disabled, prisons convince me that nearly none of them treat their vulnerable populations with dignity consistently unless the person has an advocate (or advocates for themselves). Isolated locations increase the likelihood that an advocate won’t be available. They also isolate the vulnerable from the rest of the community, who might provide more eyes.
But, I don’t understand the ideological objection to institutions that seems to drive some of the decision making. I, for example, preferred the “institutional” daycare for my children over home care because home care depended too much on trust of a small group of individuals. The 75+ size of our day care meant there was more regulation and more eyes on everyone.
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Very true. Misericordia is the opposite of isolated. My friend has both an on-campus job and also an off-campus one, and is quite near her parents. Misericordia started its life as Angel Guardian Orphanage. I’ve met people who grew up there. It was not exactly a warm and pleasant environment then. Much better as a facility for people with disabilities.
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I can’t really talk about this on the blog, but we’re investigating various residential facilities that are tailored for Ian – short term place for kids with high IQs and social skill needs. Very expensive. Lawyers, so can’t say much more. But my research at those kinds of program turned up all sorts of other WOWOWOW places. They cost $100K and are for kids with all sorts of bigger issues. Acres of green fields with pony riding lessons. Rich people places.
Also, some of the private schools for higher needs autism are now building adult living centers. There’s one down the block from me. My understanding is that these homes will be state of the art, but very expensive.
I do think that larger residential communities are better than smaller ones, even for people like Ian. If he got plopped into some random apartment, he could make his own dinner and take the train to work, but he would be totally isolated. He would be completely alone, when he wasn’t at work, and he would get very depressed. They have some minimally supportive living communities with organized activities on weekends in NJ. There are super long waiting lists, but that might work for him. Right now though, we’re expecting that he’ll be with us for decades.
I also love the idea of mixed living spaces to include the elderly and the brain injured. (How sad, Cranberry!)
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It was sad. Is sad. It surprised me, because this, if true, doesn’t get a lot of coverage in the press. We hear a lot about people who overdosed and died, but not much about people who survive with brain injury. I found this: https://www.biausa.org/public-affairs/media/persistent-and-abusive-use-of-opioids
I suppose that a care home with memory care would be a good place for rehabilitation of people with other brain damage, but I would worry about younger people with poor impulse control in the same place with very frail older people with Alzheimers. As with so much in this area, it’s very individual. The young people I saw in my mother’s various care homes/hospitals were somnolent and inattentive, not energetic or loud.
It does make me wonder about the scale of the problem, though, given that my mother’s stays were essentially random.
One more thing: Different care homes have very different outcomes. Sometimes they have to report this to agencies, especially agencies that send them patients. In doing research, it would be good to see if you can find local people who have regular contact with the different facilities. My father did research at the time, and reported that the patient outcomes did not necessarily correlate with how fancy the facility was.
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Misercordia serves 600 people with operating costs of 70,000,000, so more than 100K per person, but that’s with government funding and substantial private fundraising.
I’ve been seeing those private 100K places, too — they are another example of the different worlds for people in higher income brackets. If you fund 100K college, masters, internships, and apartments for your typical children, 100K for a child with support needs feels more affordable.
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Contraception is a huge issue for teenage girls and young women with disabilities. I could teach an entire ethics course on the experiences one of my mom’s friends had with her daughter.
Good luck with your research on plans for Ian!
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