As some readers of this blog know, I have a brother in law with a developmental disability called autism. He lives with his mother, about 150 miles from us. His mother is in her 80's but wants my brother in law to continue to live with her.
My brother in law receives what is called "Medicaid Service Coordination" under something called the Home and Community Based Waiver. He has worked at a sheltered workshop at the local "ARC" for many years. The service coordinator is there to serve the disabled individual, to help him or her in many areas, and to be an advocate.
My mother in law called today. His Medicaid Service Coordinator is leaving her position because of health problems. Tomorrow, my spouse will be calling her replacement. We met her once but we don't know her well.
We know that budget cuts are coming to all government agencies, including those agencies which help individuals with developmental disabilities. So, this isn't totally unexpected. Hopefully tomorrow, we are going to find out just how bad it will be for his brother. What we are especially concerned about is, first, his Medicaid (which he depends on for some of his medical/dental coverage and his service coordination), and second, what will be happening to housing programs here in NY. My brother in law is on a waiting list-a very long waiting list-for housing.
It is not easy for families who have a disabled member. My brother in law is verbal, but has a lot of difficulty with communication. It is very difficult for him to deal with any kind of change. He may only have a limited understanding of what is happening in his life-or he may understand a lot and may not be able to express it to us. We just don't know.
He will never be able to live independently. He is fortunate to have a family who loves him very much. Not everyone in his shoes has this.
This is only the latest chapter in a very long story.
I have a feeling the news won't be good.