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.