Initial Advocacy Efforts and the Painful Process of Learning

It was quite clear to us, given the sudden death of my father in law, that if something happened to my mother in law, it would be imperative for Bil to have housing taken care of.

We knew Bil worked in a sheltered workshop at the local ARC (then called the Association for Retarded Citizens-how far we have grown since then!).  So our thought was to call our local ARC chapter here in Binghamton and find out about housing options.  Speaking of how naive we were....this was around the year 2000.  My husband, Bil's brother, called.  (I had tried to do internet/CompuServe groundwork, hadn't found out much.)  As I recall the conversation went something like this:

Husband:  I have an adult brother who has autism, and I need some information.

Local ARC:  Is your brother on Medicaid?

Husband: No. (we did know that much).  Uh, does that matter?

Local ARC:  It sure does.  Without Medicaid, we can't help you or your brother.

Husband:  Why not?  Can't we just pay for these services out of our pocket?

(someone at the other end of the phone was probably really sighing right now.)

Local ARC:  No.  The rules don't allow it. 

Very fortunately for us, we attended a skating night for children at our local elementary school (my son then was in elementary school) and we ended up meeting someone who was running for the local school board.  At that point our child was experiencing various difficulties at school and we talked to this candidate for a few minutes about them.  The candidate had a child with learning disabilities.  She gave us a name, of an advocate, someone who had a child with a physical disability. We contacted her.  She told us about something called a Home and Community Based Waiver.

A what?  Well, it was what we needed to be able to call the ARC back.  Not quite Willie Wonka's Golden Ticket, but, it was the entry point into "the system".

She also told us about something called Medicaid Service Coordination.  She didn't use the ARC but another organization, for her son (who is not developmentally or intellectually disabled.)


But at this point we were still somewhat focused on the ARC.  We thought we should, as Bil was getting services from his ARC.  (as we found out later, "not exactly".)



And so the journey began.