Initial Advocacy Efforts and the Painful Process of Learning Continues

I do not remember how we found about about this seminar, but it was probably the most important meeting we ever went to.

It was a free seminar on housing needs for people with disabilities, and it was tied in, as I recall (my memory may be a little hazy on this) with a lawyer talking about something called Supplemental Need Trusts.

I believe this happened in 2001.  I could check my advocacy binder, but I just want to get this written.

I didn't go to the seminar-I had to work.  But my husband, his brother, and her wife went.  And I don't know how they did it, but the person who did the seminar agreed to have dinner with us at a local restaurant.

We probably learned more from that one man, who was employed by what was then called OMRDD (now OPWDD), that one evening, than we have ever learned before or since at one time.

I won't get into the nitty gritty of Supplemental Needs Trusts. (I really can't, I'm not a lawyer or other legal professional.  I'm not any kind of legal professional, in fact.  Just a in law who really cares.)

Now the housing things, though.

Housing for people "in the system" is a very tricky situation.  There are limited choices on how to fund housing, and all of them are...well, complex.  Very complex.  I am convinced the government "programs" for those with disabilities exists, not to help those with needs, but to keep them in their place.  A place of poverty and hopelessness.  But I digress.  You can lose government benefits if you do the wrong thing - government benefits Bil would need just to exist.

We also found out,that the worst thing we could do to help Bil would be to take him into our homes if something happened to my mother in law.  Even for one night.

We also learned that if Bil's mother died without plans for Bil's housing, he would be subject to the "first available bed" in an emergency situation...and many of these beds would be in programs not at all suited for people with autism.

There was also how Bil would react to think of.  As anyone who is familiar with autism knows, people with autism do not cope well with changes to routine.  Bil is no exception.  He treats any change of routine with a lot of anxiety.  And his mother has been the "constant" in his life, the interpreter, the buffer, the go-between.

If Bil reacted to a placement with a temper tantrum, for example, he would be drugged.  And drugged with heavy duty drugs at that.

This man's object lesson was:  We needed to make plans.  Not five years from then.  Now.

He also told us about a list we needed to get Bil on.  A list called "NY Cares".  He said not to even wait a day.  And, we had to get Bil on Medicaid.

So, what has happened since that night?  "Stay tuned".