I’ve been doing my Swami gig live these days and recently sat down with a woman I’ve known forever (forever in autism years means since diagnosis). She is stuck between a rock and a hard place. Her son is currently home and should be (would like to be) living elsewhere. He is a Priority One, like Nat, and so his situation is difficult. His mom took him out because the placement was inappropriate. The match was terrible. The needs of the young men were completely different. I’m pretty sure that this was a vacant slot offered by the Department of Developmental Services and they found their round peg to go into that square hole and just hoped for the best.
There are so many parents like her, like us, coming up through the schools, who have learned how to fight, just as the parents fought before the Federal law, IDEA was passed. Parents have always had to fight for their disabled kids. It’s a sad fact, but it does make a creepy kind of sense. The state bureaucracy figures that if your need is bad enough, you will fight for it. Even if this is true for some, it is not true for others. Some have such a need for supports that they are too overwhelmed — because of their child’s needs. Some work long hours. Some don’t speak the language. Some don’t know what to do, what is even wrong, who to call.
How can this problem be solved? I don’t know. The piece I do know is the advocacy piece. No one is going to give anything away unless they are a charitable foundation and I’m pretty sure that the state government is not. And the line that we are given — that the system is abused by so many — I just refuse to believe it. My guess is that many more people don’t know how to work the system than do. Even the most highly educated, well-resourced parents I meet as the Swami do not know what they should do when to prepare their autistic child for adulthood.
Here are my rules of thumb:
1) Assume that no one knows you or cares about your kid. Get angry. Then get over it.
2) When you have a good hour, call your state Department of Developmental Services, or Department of Rehabilitation Services. One of the Human Service agencies in your state government. Stay on that phone. Get names of those you are talking to.
3) Learn the name, number, and email of your own liaison as well as your regional director.
4) Send an introductory email to the liaison and cc the regional director. Tell them you will follow up in one week.
5) Rinse and repeat.
You’ve got to call. That is the first and foremost task on your plate. Make your contact, and show them who you are. Think like a Who. We are here, we are here, we are HERE!