Monday, September 23, 2013

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 85 years old, 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. It is good that the state takes reponsibility for those that cannot look after themselves. Would we want to go back to the Poorhouse? It is abominable that the state does not acknowledge family. We were able to obtain guardianship and power of attorney for my late mother in law but it was hard work. My mother and stepmother have arranged enduring powers of attorney for the future. The difference is that they are in a position to do so. Your BIL is not. I hope that your husband is able to obtain guardianship of his brother. It is not only tragic but economically asinine to make it so hard for families to look after their own.

  2. My uncle was developmentally disabled but was able to work and drive although he could only read at about a 3rd grade level. My grandparents knew he would never be able to live on his own, so they had their will set up so that my uncle could stay in the house after they passed (since that was the only house he knew) and he got everything until the house was sold (more about that later). My mother became his power of attorney. My grandparents had a hidden fund that my mother could access to pay for utilities, taxes, maintenance and other necessities for my uncle. By the time both of my grandparents had passed away, two of their other children had moved back home so they were able to help my uncle out. Eventually my uncle became too sick to live on his own due to cancer so he moved in with my parents (my dad was retired and would be home all day to take care of him) and his two sisters each moved into their own apartments.

    My grandparents were thoughtful enough to have it spelled out in the will th if he ever left the house due to illness the house was to be sold, and split evenly among all children and grandchildren

  3. It is typical of the way things 'work' here attempt to understand or address a disability and it's consequences...

  4. What exactly does guardianship entail...and does that mean he lives with you or is it now your responsibility to get the best possible care for him? I think it is wonderful you are doing this and may you be blessed in this journey...

  5. Some things are best not to be put off. The sooner everything is settled the better. Hard, I know, for his mom.


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