More Adventures with Autism

Regular readers of my blog know that I have a brother in law with a developmental disability called autism.  My brother in law is in his 50's and lives with his elderly mother (her choice).  We live about 150 miles away. As anyone who has ever done long distance caretaking knows....it can be an adventure.

One thing is for certain when you have a loved one with a developmental disability.  Life is never dull. There is a constant learning process, a constant advocacy process.  And you learn a lot of things:  patience, the need to be assertive without being aggressive, the need to network and make contacts. And, to keep on top of things.  We don't always do so well on the latter.

I had reported a month or so ago that there were some changes in my brother in law's "service coordination" which we needed to check into.  Here, I have to explain that my brother in law receives service coordination under something called a Medicaid Waiver.  In NY State the particular waiver is called the Home and Community Based Waiver.

Medicaid has a very bad "name" with the general public but in reality it is a lifeline for many families with disabled members.  Of course, keep in mind that what I am writing about is happening in New York.  Each state has its own Medicaid program.

At the same time, when you deal with government bureaucracy, there is the "Catch-22" factor.

To set the stage for this: disabled people on this particular Waiver receive "Medicaid service coordination" from an agency.  For my brother in law, it is his local "ARC".  And, NY is cutting budgets, as are many states.  On top of this, my brother in law's service coordinator was retiring due to health reasons.  My mother in law requested we contact the new coordinator.  So we're sort of in a Perfect Storm situation.

We made contact (after several phone calls, which is typical) with her supervisor back around the 19th but with our Civil War trip the blog post I wanted to write got swallowed up.  But I really need to talk about this now.

The supervisor told us that there have been changes in NY service coordination rules. For example, the service coordinator used to have to visit with the client (also called the "consumer") one a month.  Now it is 3 times a year.  But then came the bombshell...

My brother in law was losing his Home and Community Based Waiver.  Why?  Because he hadn't used any services in the past year.

And why wasn't he receiving services?  Because the ARC was never able to find someone to provide the services our brother in law needed. (this has been ongoing for several years, incidentally.  It's complicated why - I'm sure the wages they are able to pay in what is basically a very high cost of living area has something to do with it.)

Gotcha!  Catch-22!

Well, my spouse (who made this phone call) wasn't about to take this lying down, which is where the assertiveness and advocacy part come in.  And basically, the supervisor ended up agreeing that it was a lack of provider, not a lack of bro-in-law using the services, that was the concern. And that he really needed these services (training to help him become more independent, which would help his aging mother out tremendously, too.) So they are going to keep trying.  But then:  "if we find a provider it will be no problem to get him back on the Waiver."  Which is....well, there is another rule when dealing with government.

Don't believe it, ever, when they say anything will be "easy".

It was hard enough getting him onto this waiver.   And now it is going to be easy to get him back on if they ever find someone to provide these services?  Forgive me for taking this one with a few bags of salt.

So anyway, they sent us some paperwork to review, which we got the other day.

And now, the new service coordinator has called us, so we will start on another round of missed phone calls and phone tag.

Isn't it fun and exciting?