Thursday, December 12, 2013

Worries for the Future Part 3

As regular readers of this blog know, I have a brother in law, in his 50's, who is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For several months, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   I promised you a "to be continued" and here it is.

We had had difficulties, but today, we received the last piece of paperwork needed to start the guardianship petition. Tomorrow, we drop it off to the lawyer.  Then, we'll just have to see what happens next.  It's not necessarily a quick process.  Meanwhile, time ticks away - my mother in law (and we) grow older every day.

Here's my last post, from September.

Worries for the Future Part 2

In an earlier post back in August, I posted about needing to plan for the future of my brother in law, who is developmentally disabled with a condition called autism.  

We live in New York State, and what you are about to read may not apply in your state/country.  I want to share this as a cautionary tale, not as a "how-to" primer.

We've (we and other siblings/spouses) been involved in other advocacy for him, but now the time for this big step of "what comes after his Mom" has come.  She is in her mid 80's, and eventually, will no longer be able to care for him.  Or, worse-the inevitable will happen and she will leave this Earth forever.
If, heaven forbid, she died tomorrow, this is the future the State of New York has prepared for my  brother in law and other disabled individuals without a guardian, according to a knowledgeable person we consulted.
1. He becomes a ward of New York State;
2.  He can't stay where he lives (if his Mom died, he's the only other person living in the house) because he would be alone, and the state will not allow that.  He is deemed to need 24 hour supervision, and the state can't provide 24 hour supervision where he lives now  So housing must be found for him;
3. the court appoints an "advocate" for him, and it is potluck - could be anyone - maybe a person that doesn't know my brother in law at all;
4. Then the State finds emergency housing for him - "first available bed" which could be something not at all appropriate for his disability, but too bad.
And, by refusing the placement, it may be years before another opportunity comes up.

We can't help him without one of us becoming his guardian.

People with autism, in the best circumstances, find it difficult to cope with any type of change.  And this, to use a cliche, would be the mother (no pun intended) of all changes.

Years ago, my mother in law told us recently when we discussed my spouse applying for guardianship, her husband (dead some 15 years now) and her were advised to apply for guardianship.  Her husband elected to ignore this advice.  After he died, she saw a lawyer and certain other documents were drawn up but again, guardianship never happened.

The blessing is, my mother in law is still alive.  She is trying to age with some kind of grace, but refusing to let go of her disabled son.   This man is blessed in that he has a family who cares for him. We are finding that a lot of older men and women in that situation are all alone. No one cares.

So, my spouse is seeking guardianship for his brother.  It's been an adventure, which I will write about more as time permits.

"To be continued".


  1. Glad that your spouse is trying to help. Good luck!

  2. This is a wonderful way to care for your family. I'm deeply moved that you are taking this step to care for your brother-in-law. If only everyone took on the same attitude for their relatives.

  3. Yes, I think it's important to look to the future, but I try not to dwell on it too much. I always feel it's important to live in the 'now'


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