Back in October of last year I wrote the following post, which I have somewhat edited.
What I wrote then is in italics, the update in "regular" font.
Back around 2001 my husband and I attended a seminar on housing by someone who worked for what was then called OMRDD. What we found out was that housing options for developmentally disabled are confusing, wrapped in government red tape, and had lots of long waiting lists.
Things haven't changed. The person who did the seminar very kindly had dinner with me (I wasn't able to come to the presentation) and some other family members. He is retired now, and was a consultant for a while, but I have lost his name (and card) in the mists of time.
Things have changed-for the worse. OMRDD may have changed its name but it hasn't changed its stripes.
Due to budget cuts, Bil's ARC can not build any new housing. We are now told that, however, the existing housing (totally inadequate) will continue - for now.
Bil's Medicaid Service Coordinator doesn't feel Bil could ever live independently. However, she feels he would be a good candidate for some kind of supported housing situation, with perhaps one or two other "roommates". I am not sure a complete evaluation has ever been made regarding his life skills. We've also been trying for about three years to get Bil a service provider under NY's Residential Habilitation Program (Res Hab) but no one seems wiling to work with a 50 plus year old man. I'm sure that is combined with the relatively low wages for such a position compared to the cost of living in Putnam County.
Still no Res Hab. In fact, Bil was taken off the Home and Community Based Waiver because - he isn't getting services. Why isn't he getting services? Because they were unable to get him Res Hab! Talk about a "Catch-22"! But the new service coordinator Bil has now is trying. I hope she can find something before budgets are cut even more.
The good news (comparatively) is that Bil is still on the NY Cares list, so there is a bed out there for him somewhere if his mother's health takes a turn for the worse. However, who knows where that bed would be.
We actually started this advocacy journey, as I mention above, in 2001. And where have we gotten? Maybe just a little further along on the NY Cares list. That's all.