Cammie McGovern’s journey to find a path for her son, who has both intellectual and developmental disabilities (IDD), is eerily similar to my journey. I, too, had to spend an entire year learning the ropes, after my son finished high school. In fact, I visited several programs that she mentioned in her book, Hard Landings: Looking Into the Future for a Child With Autism. She highlights one program that teaches computer graphics to people on the spectrum; Ian is learning to make film credits in their Wednesday evening online class.
You might smile and say “small world.” But it isn’t really. As McGovern points out there are 7 million people with developmental disabilities in this country. Our world only becomes small, when you’re trying to find good places for your adult child with differences. There just aren’t many good places out there.
In the past, institutions were the destination for adults with disabilities, and by the 1970s, their horrible conditions were the subject of high profile exposés. Last year, I interviewed a social worker who worked at one of the most notorious institutions:
Read more at my newsletter, The Great Leap
Apt. 11d 
I feel very lucky. In the small city I live in, there are 3 buildings that are subsidized/accessible. They have on-site social work assistance that is not intrusive. You can live there if you are a senior, if you have a physical disability, or if you have autism/mental illness/other developmental disabilities. Many who live in these buildings work, but don’t earn a lot of money. There is also a fair amount of regular subsidized housing that does not include assistance.
In the metro area, there is also a place called Misericordia, which serves people with all kinds of developmental/intellectual disabilities in setting ranging from congregate living to group homes to independent apartments. Again with whatever level of support the individual needs. Some residents have outside jobs.
This is the Chicago area. Illinois is not known for particularly good services for PWD, but these options are pretty awasome.
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Yes! There’s a big section in the book talking about Misericordia. It sounds like a wonderful program.
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And thanks for commenting on this and not the royal family thing. It’s depressing but that fluffy newsletter post will get twice as much as attention as the serious one.
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Misercordia does seem like an example of an institutional setting that people have good things to say about (though I think some disability rights activists would disagree). I do think that Sister Rosemary Connoly might be a big reason for the longevity through the modern disability age, a woman with a calling and dedication, but also skills in running and growing an organization.
Misercordia has a budget of about 80,000,000 to serve 600 or so residents. 65,000,000 from government sources and 25 million in annual fundraising. They are setting up a foundation to separate the fundraising assets from the Home, it appears, mostly, to shelter assets (from lawsuits, but, I would guess also from the Archdiocese). The per served cost is about $130K per year. And construction has been done with other sources of funding.
I do think that many of these issues come down to how much money there is to spend, to create “a life worth living.” Institutional settings like the ugly ones of the past were chronically underfunded. The modern solution seems to rely heavily on volunteer labor (of parents) — I found a source that said 30/week for those with significant needs.
The 36 person autism facility being built in NJ looks like it’s trying to raise 20 million + for construction costs in private funding (there might also be public funding sources). I do wonder what it means to be a “founding family”. A board member, in general, couldn’t be guaranteed a placement for their child (I think, though potentially that is poorly enforced).
And this is trying to look at the public facing fundraising. I’m entirely flummoxed by the arcane rules of the government funding.
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You’re right, there is some pushback from disability rights activists against places like Misericordia. I happen to be well aware of this through my involve,ment with a Center for Independent Living. I agree with their emphasis on maximum independence for PWD’s, but there is an element of extremism in their insistence that all PWD’s should live in their own apartments and manage their own supports. Not going to heppen with people who are not their own decision-makers, and people whose support needs are either substantiial or else non-typical.
And, I have a family friend with Down syndrome who has lived at Misericordia (in an independent apartment with supports) for several years. It is perfect for her.
As you note, the cost is extreme — although inflated by the fairly large number of residents who also have pretty severe medical needs. Sr. Rosemarie is indeed a uniquely talented and driven individual. I think the hope is that she can stimulate other experiments that will be more cost effective.
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You know a lot more than me, so I want to avoid being a splainer.
I do think some of the PWDs who can manage their own supports are scared of even a good system that costs 130K/person when they want 24 hour care that they manage themselves, with their own choices of where to live and who serves them and what they need, for, potentially costs of >200K (24 hour supports at $25/hour). Many of the stories I read when pay raises for care workers were being discussed in NYC profiled people who had previously been able to hire the care they needed (parents, to serve their children at home, or adults who served their needs in their own apartments).
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PWD are really, really different. There’s people like Ian, who can be 95 percent independent at some point. There are people with severe autism, are non-verbal, self-injurious, not toilet trained. There are people, who hear voices and try to kill the family dog. There are happy, social, vulnerable people, who can’t remember how to make themselves a frozen waffle. And so on. I’ve met so many PWDs by this point and they all have different needs.
We need a diversity of options for all those different types of people. Ian’s poor social skills will never go away. If he has a full time job, that will be enough social stimulation for him for a week, so living alone will be fine. But if he can’t land a full time job, he’ll need housing that has built-in social opportunities. He’ll need light oversight to make sure that he files his taxes correctly and to handle random stuff like getting out of jury duty. He can live with us for years, but he really should live independently by 30, so he can handle life independently after we’re dead. He also should have access to people his age. He wants to have friends.
Talking to other autism parents, everyone wants they kids in an intentional community. I really think that this is the future.
How are we going to manage the costs? I don’t know. I don’t think that people like Ian need many expensive services. Like I said, he needs one or two organized social activities for a week, as long as he has a full time job. And he needs once-a-week oversight of bills and other life skills. How many would that be? $20K per year tops? If he’s low income, he would be entitled to low income housing, so it could be provided in one building with other autistic people, who he could join up with for movie nights and pizza nights.
[Watching another evening webinar on NJ’s disability laws. Ugh. Glass of wine in hand.]
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And, there are also the PWDs who need expensive full time physical care, like quadriplegics, but can make all their decisions for themselves.
Whenever I try to research the laws about disabilities and access to resources my head explodes. I really do think there’s purposeful obfuscation motivated by different groups think it’s better for someone like me (casually interested, taxpayer and voter, but not someone who needs to understand it) not to understand. I guess I can live with that, if it were only me, but I always hate, hate, hate systems that require social connections, someone who whispers in your ear to really understand what resources you can access.
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