kitchen table math, the sequel: Bereft

Saturday, August 1, 2015


Andrew graduated high school in June and is now, all of a sudden, moving to Jimmy's group home.

Sad story: New York state has zero new group homes opening up for adults with developmental disabilities--and this at the very moment the children of the autism epidemic reach 21. The only adults able to enter the system are homeless and/or orphaned, and they're all on waiting lists. Andrew is getting in by the skin of his teeth because his brother lives in the home and Andrew was already 'in process.' All of which means we can't delay. We take this spot, or we take nothing.

I'm not ready.

I've spent the past two mornings crying, then recovering enough to get some work done.

I remember, several years ago, when my brother's firstborn was leaving for college. My brother and his wife were a wreck. I said, "Well, at least you have two kids still at home," and my brother said, "Right. We get to keep going through this over and over and over again."

Andrew is the third to leave home. Third and last.

Making it so much worse .... he doesn't want to leave. Jimmy didn't want to leave, either, but he was less verbal than Andrew and, after all, we still had two children at home. Hard on him, not as hard on us.

We've found a condo development we love (and that we can probably afford) that's just down the street from the group home, so we plan to be close by forever.

Still, it's not the same.


I don't even know if this is the right thing.

But I don't see, immediately, what else we can do given the fact that we are not going to live forever, and given the equally salient fact that Ed will not be employed forever.

New York seems to be moving to a "system" whereby parents will essentially set up their own group homes with state support .... which so far means 80-year old parents living with tantruming 50-year old autistic people and trying to hire, train, and oversee staff at a time when they themselves are at high risk of becoming disabled if they aren't already.

The officially sanctioned idea seems to be that parents will buy an apartment or a house that becomes the developmentally disabled adult's permanent home.

I don't know whether the state helps with cost of purchase. Sounds like no.

I'm not at all against having such an option, but how many parents who've spent their lives raising a developmentally disabled child are now in a position to buy a second apartment or house in Westchester County, beyond the apartment or house they've living in themselves?

There is state funding available for staff to look after developmentally disabled adults living in parent-bought homes, but who's in charge of the staff?

Is it the parents?

And if it is, what happens when the parents are gone?

Plus: autism is neither simple nor intuitive. A high school graduate can't walk in off the street and know how to deal with a nonverbal autistic adult who has challenging behaviors and an eating disorder to boot.

But maybe there's something I'm not seeing here. I'm going to look into things as soon as I finish my book.

Nevertheless, I suspect what I'll really be doing is finding out that I need to engage politically.

The literature we've been given reeks of good intentions and person-centered ideology run amok.

Developmentally disabled adults must have their own private bedrooms!

Because having your own private bedroom is synonymous with human dignity!

So close down the group homes because adults living in group homes sometimes have roommates!

It sounds to me as if the day programs may be in danger, too.

Developmentally disabled adults have a right to employment in real businesses, outside the confines of sheltered workshops!

Because human dignity!

It's full inclusion for developmentally disabled adults but without the institutional backing or training for the people making all of it happen.

I despair.

No one has a right to employment in private-sector businesses, and the number of "discouraged workers" in prime working age (25-54) is at record or near-record highs.

When only 54% of high school graduates are employed, how exactly are aging parents running their own private group homes going to find private-sector employment for 100% of their developmentally disabled adult children?

And I'm just thinking about autistic adults at the moment, who tend to be hale and hearty. At least, my own two autistic adult children are hale and hearty. One of Jimmy's friends at his group home is in a wheel chair. His mother has diabetes & an infected leg, & she has had difficulty walking herself for several years now. How exactly are people in such circumstances going to get their wheelchair-bound adult child to a job at McDonald's?


I have to hang onto my hat.

We're incredibly lucky to have a loving home for Andrew to move to, where he'll live with his brother, with his father and me just down the street.

I need to hang onto my hat, figure out who's leading the charge, and join the ranks.


Anne Dwyer said...

I totally understand.

Daniel is still living at home at age 22 and we are working on a plan. He doesn't qualify for community health services (too high functioning). He did qualify for job services with Michigan Rehabilitation Services but they didn't have to do much because he already got a job through his school 'Learn to work' program.

But the approx 15-20 hour a week job is down to about 3-9 hours a week. It isn't really so much the money as the structure. He doesn't have anything to do all day. I am calling Michigan Rehab on Monday to reopen his case.

ChemProf said...

I'm sorry. That must be so hard.

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lgm said...

The high school 'learn to work' program here provides jobs and transportation after senior year until they age out of the public school system, then community providers take over. The group home in my neighborhood does not allow the residents to do things that homeowners do with children that have the same mental age, like gardening or raking leaves or shooting hoops, but they can bicycle or hang out. Adding some physical activity, song, and nature I guess could be done if they could fence in the back yard....we are rural, so there are no large spaces other than the public school gym to rent for group physical activities.

My friends with special needs family members expect to become the guardians when the parents pass, whether the relationship is sibling or cousin.

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