Sunday, July 4, 2010

Independence Day for People with Autism

For all the progress we have made in treating those with disabilities as human beings, we still have a long way to go.

There are two things I want to discuss today on the birthday of our country.

One is the fact that in November of 2008 Bil voted for the very first time.  He voted for president.  His Medicaid Service Coordinator (MSC) said Bil had very definite opinions and knew exactly who he was going to vote for.  It was thought out (at Bil's ability level) and Bil was proud.  Of course, I could ask - why was this the first time, at 50 plus years of age?  Bil watches TV a lot and because my mother inlaw tends to watch a particular channel that has a lot of political programming, he is exposed to that.  So why had he never been given the chance to exercise his right (and duty) as an American citizen?

Was it because he is still treated as a second class citizen?

Obviously, he listens to what goes on around him.  His MSC also told us Bil doesn't always agree with that channel in some of his views so he is obviously drawing his own conclusions.

Second, there is this local news:

Today, there was an article in our paper written by Maria Dibble, Executive Director of the Southern Tier Independence Center.  The article concerns Broome Developmental Center and recent abuses that have been  alleged there.  What is not in dispute is the fact that the state has found deficiences there, and back in October they were prohibited from taking on more clients.

What the families of those whose loved ones are already there are thinking, it is impossible for me to say.  I do know someone who works there, but this person is in a "support" job that does not involve any client contact.  (This person also has a physically disabled son, for what it is worth, and needs that job badly.)  Also, although I do not know Maria Dibble personally, I have read many of her writings.  I respect her highly.

This, of course, enters into what we may want to do concerning Bil's future housing.  Southern Tier Independence Center may be able to do his Medicaid Service Coordination-if they are taking on new clients.  They, by definition, oppose group homes and other such institutions. But will they be able to help Bil?  Or, would we have to seek out some kind of group home situation?  And if so, will we one day face something like what is happening at Broome Developmental?

Bil, after all, can make decisions, but they are limited.  If you ask him about housing, he wants to stay in his room at home forever.  But Mil has a reverse mortgage, and the house will have to be sold to pay it off.  None of us can afford to pay the loan back. We can not comply with his wishes.

And what about others, more impaired than Bil?

These "clients" are citizens.  I'm sure some vote.  Why shouldn't they have the right to control aspects of their destiny, as their abilities allow?  Why do we allow these abuses to take place?

There, but for the grace of God, go you and I.  One day, it may be your son or daughter.  Or your brother or sister.  Or your aging parent.

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