Jan 11, 2013 0 Share

The State of the State


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Cody’s meeting with his new service coordinator is today.

I mentioned in my last column how we planned to discuss with her the possibility of Cody going to a program in Springfield that has small classes for adults on the spectrum. These classes involve cooking, learning about the weather, learning different aspects of science and more. But there are other things we want to discuss as well.

One of the things I fought for during Cody’s high school years was speech therapy—not to help him learn to enunciate words correctly but to learn basic conversation skills. Sadly, that was never something they provided in spite of my efforts to convince them this was something he needed, but why not?

It seems the prevailing thought is that such service doesn’t do any good for people past the elementary stage of learning. That is something I fail to understand. If a person suffers a trauma to the brain sometimes they have to relearn speech and conversation. And sometimes that takes years to do. But a person with a Pervasive Developmental Disorder is somehow seen as incapable of advancing past whatever he has learned by the age of 12 or so. In Cody’s case they simply gave up even before that.

Why isn’t this something that is covered by his Partnership for Hope Waiver? I know he can learn because he learns these things from Bill and me. Imagine what he might be able to learn from someone who specializes in this area—someone who could work with him specifically focused on this goal, on a one-on-one basis. Well I did some research and it was an eye opener.

The programs and services Missouri will pay for are extremely limited. Adult daycare services and home care services make up the biggest portion of the services paid for by the state. But that isn’t what Cody needs.

One-on-one services where speech therapists and occupational therapists can work with Cody is what he needs. And he does need integration into larger settings. But I can’t just take him out and throw him into that situation. A meltdown of epic proportions would be sure to ensue. It has to be done a little at a time.

But there is no focus on what adults on the spectrum actually need. There is only a very narrow, generalized scope of what is needed for people who have ASD, Downs Syndrome, and other developmental and intellectual disabilities. It’s like giving a dose of medicine to someone with a heart condition and then giving the same dose of the same medicine to someone with a broken leg and expecting both to be made better. It just doesn’t work!