Tuesday, January 17, 2012

Another Awesome Advocate

I was pleased to discover that local autism advocate Gary French was written up in the Syracuse newspaper.

He hoped to study law but had to care for and advocate for his child with autism and a seizure disorder.
He assists other parents in their advocacy efforts.

And now, he is taking the case of his daughter to the Supreme Court.

Never underestimate the power of a parent of a disabled child.

I wish him the best of luck.

Saturday, January 14, 2012

Another Sib-There But For the Grace....

The other day, we met an individual who has not one, but three, siblings with disabilities of one type or another.

We are very lucky with Bil in many ways.  Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him.  Also, he is in relatively good health.

As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.

We talked about one sibling in particular.  The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today.  It's a tragic situation.  The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.

When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.

Just like Bil.

The sib did make the adjustment though.  Just like Bil will have to when his time comes.  He will have no other choice. And I don't know how well we can prepare him in advance.

It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.

Thursday, January 12, 2012

The Disabled Caring for Aging Parents

At one time, in New York, Medicaid Service Coordinators (MSCs) had to visit with their clients once a month and do a home visit every 3 months (so, in other words, they saw their clients in the home setting three times a year).

Now, with budget cuts, the visits are 3 times a year, and only one visit needs to be in the client's home.  So, in other words, home visits have been cut from 4 times a year to once.

I don't know the last time Bil had a visit at his home, where he lives with my mother in law.  But we are worried about my mother in law's falls (several falls in the past year), and went ahead and made the medicaid service coordinator aware of it.  I wouldn't be surprised if Bil mentions the last fall to the MSC, where he was unable to get her up on her feet and (fortunately she was conscious) she was able to give Bil instructions on getting help for her.  Fortunately, all ended well.

The MSC offered to do the annual home visit now, rather than wait another four months, to make sure all looked OK.  That visit will take place in the near future.

I wonder what effect the decreased schedule of visits will make in the lives of the developmentally disabled overall in NY State.  Bil is far from the only disabled person living with aged parents.  In Bil's case, she is visited regularly by other relatives.  But that is not always the case.  And I can't believe other developmentally disabled individuals don't cope with trying, in some way, to help care for their elderly parents.

We without disabilities have enough problems being caretakers.  I feel for Bil and this situation that, basically, his mother has forced him into without being willing to let him go into supported housing.  But he has taken on this burden. He's incorporated some aspects of his caregiving into his daily routing-such as automatically going into the car trunk to take groceries or whatever into the house.

But for enough things, he still can't help unless he is constantly coached.  And he won't do anything with cooking at all - anything to do with cooking (the stove, the microwave, etc.) terrifies him.

We've made the MSC aware of this situation, and we'll see if she has any ideas after the home visit.  Her help, of course, can only extend to things that benefit Bil, and we realize that.  But another eye on the situation will help us.