Wednesday, July 4, 2012

NY Sib Survey - A Glimmer of Hope?

Today, where I live in New York State, it is Independence Day for most of us.

But not for my brother in law, Bil.  Bil, who is in his 50's, could never live independently at this point in his life.  A former Medicaid Service Coordinator who worked with Bil for several years, told me that he most probably never could.

In a perfect world, there would be a place for Bil.  The sad thing is, I don't think he has a good handle on what is going to happen after his mother, who has been at his side nearly every day of his life (except for when she's had to be hospitalized) can no longer take care of him.

There are so few services that caring in laws can use to gain independence for the brother in laws they love.  Several months ago, in fact, we found ourselves in a type of Catch-22 situation with Bil.  He lost access to certain services because he had not used them. But the reason why he had not used them is because there was no one available to give the service.

His current Medicaid Service Coordinator is caring, but there is only so much she can do in the current climate of budget cuts. But, there may be some hope on the horizon.

Today, we found out about something called the NY Sib Survey. 

This is a call for brothers and sisters of those with developmental disabilities to complete an online survey, both to educate themselves, and for officials of New York State to learn more about their needs.

The only problem was - when I went to the survey site - the survey still wasn't there, a month after it was supposed to start.  The quoted Facebook site didn't seem to exist, either. Hmmm....another victim of budget cuts?

There was a phone number, so my husband left a message.  The number is an Ithaca phone number - Ithaca is about an hour away.

I hope someone will call back. If no one does - it will just be part of the same-old, same-old.


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