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Dog-Eat-Dog Statism for Special-Needs Families: You’re Either at the Table or You’re on the Menu

 

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I wrote this six years ago, but I think the issues I raise here are more relevant than ever:

 

I wouldn’t have expected a conference on therapy for children with autism and related disorders to have much to say about politics, but in a country where the state’s tentacles reach into pretty much every aspect of human life, I should have known better.

My daughter is developmentally disabled and I am pursuing more child-centered therapies for her than the more widely recognized ABA (Applied Behavior Analysis) method, so last fall I attended the DIR Floortime Conference on Floortime, a more play-based form of therapy.

As soon as I walked in, I was struck by two phrases: “Parent Choice” and “Advocacy.” I was pretty sure that “Parent Choice” wasn’t going to mean what I hoped it would mean. So I asked someone who was wearing a big button with the phrase on it, and found that indeed, “Parent Choice” in this context simply refers to having the “choice” to force your insurance company to pay for alternative therapies in addition to the more established ABA method.

The issue revolves around a bill that was passed in 2011, SB 946, that mandates insurance coverage for developmental therapies to treat autism and Autism Spectrum Disorder. However, either due to the way the bill was written or to the way it has been interpreted – and with much thanks to the ABA lobby – the insurance codes only apply to ABA therapy and not to alternatives. So now the DIR/Floortime lobby is rallying to change that. Of course, as someone who doesn’t believe in forcing other people to give me anything, I couldn’t support this kind of “choice”, but I just smiled and moved on.

As it turned out, the guest of honor at the conference’s gala dinner was Dr. Louis Vismara, senior policy consultant to California Senator Darrell Steinberg, the author of SB 946. Dr. Vismara spoke on the first morning of the conference and assured parents that he would work hard to get the problem fixed so that parents could also force their insurance companies to pay for Floortime therapy. There was much applause.

There were other concerns too. Some parents had felt the effects of state budget cuts and had to struggle to get the services they needed for their children. Dr. Vismara sympathized with these concerns and stressed the importance of being active in “advocating” for their children. He said that, in the world of public policy, “you’re either at the table or you’re on the menu.”

He ended his talk by urging parents to get involved in the political process, and to contact his office with any practical proposals. “If a specific problem is identified and there is a solution”, he said, then that solution has a “strong chance” of being implemented.

I had identified a specific problem and had a solution in mind. So at the end of his talk, I went up to him and asked him about it.

 

Read the rest here.

 

 

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