Thursday, August 22, 2013

Worries for the Future Part 1

I've been blogging on and off about my brother in law, who is in his 50's. He has autism, and lives with his aging mother in the only house he has ever known. We, and another brother, live some 150 miles away from them.
This can be a harsh world for people with developmental disabilities.  We can think we live in enlightened times.  But how enlightened? There's the example of this  recent hate letter  received by a grandmother of a 13 year old boy with autism in Canada and we have to think - what can be the future of my brother in law, with people like that still out in our world?  
Thank the heavens above my mother in law was just the opposite, raising her son at a time when many professionals may have advised her to put him in an institution.  But now, she's in her 80's, and, although she still cares for him, she knows, and we know, this won't last forever.

And, two of my brother in  law's siblings are older than him.  He may well outlive some or all of us. 
Recently, my mother in law, without letting any of us know until after the fact, turned down an offered group home placement for my brother in law. "Group homes" can have a bad name, but we are told that this home, where nine other men live, is a good one.  If he had moved now, he could have been transitioned at his own pace.  Anxiety and industrial strength resistance to change are part of his makeup.
If a parent died, would anyone suddenly want to be thrown into a strange housing situation? 
Now, in speaking to his Medicaid Service Coordinator, we're finding out some scary things about my brother in law's situation, all because his future was never planned for properly. In all fairness, parents in "those days" were not given guidance and had to figure it out themselves.  His mother never got herself appointed as his guardian.(There's a story behind that too, which I will blog about another time.  It wasn't at all from lack of caring.)
In our next installment - what happens to a developmentally disabled individual in New York State if their parents die and there is no guardian.  And then, I'll share some of our continued journey with my brother in law in a future post.


  1. Stopping by from UBC... My brother is mildly mentally retarded. My mother had to work to cut through red tape, but eventually she was able to place him in a program that would work for him in the event of her passing. He transitioned and has been in that program ever since. My mother has long since passed. I believe everything we need is there for us providing we are free of emotional blocks that might prevent us from reaching out and taking what we need.

    1. Thank you for sharing your family experience, Loretta. I am hoping for the best. There are people in my brother in law's program who care a lot for him, but there have been so many budget cuts in New York States (and elsewhere), we will have to work hard to "make it happen".

  2. Hi! I have physical limitations too and I tell you that without my husband I don't know what I would do. We have his sons that live in Dallas, Tx and we live in Southern Calif. and we rent our home but I think things with us will be fine. The one that I'm making plans for if anything should happen to us is our dog! No one really thinks about them like they makes plans for the humans! Nice blog post!

    1. Carolyn, I was so glad to read that you are making plans for your dog. One of my aunts (lived alone) died suddenly in a car crash, leaving two cats - and had made no plans for them. None of her grown children lived locally. It was a hardship for them to try to find homes on short notice. They were fortunate that a neighbor stepped in long term, but the neighbor couldn't adopt them.

  3. My heart goes out to you! Is it too late to take up that place?


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