An article in my local paper got me thinking yesterday. If the autism parents can get their shit together to push for more comprehensive insurance coverage of their kids' illness, why can't we?
Jim Lock himself, one of the gurus of the Maudsley method here in the U.S., once told me that eating disorders parents should model ourselves on the autism parents. As a group they've dedicated themselves to not just supporting their children but to advocacy on all levels--especially, now, with regard to insurance coverage.
The article quotes an autism professional as saying "Most of the major autism organizations, both providers and support groups, have come together in agreement that insurance coverage for all individuals with autism is a positive and important need."
Same goes for anorexia and bulimia, as well we know.
Like anorexia, autism is often not covered, or covered poorly, because it's classified as an emotional disorder rather than a brain disorder. But I say, if your brain isn't considered part of your biological body, then what is it--a disembodied organ floating in space?
One of the autism advocates is quoted as saying "We're continuing to work together in the hope legislators take notice that the need is not going to go away and we're not going to go away."
Hey, what about us? What about those of us who have watched our children waste away or go through hell, only to be told that insurance doesn't cover therapy, or IP treatment or whatever the doctors are recommending at that moment?
What about people like Anna Westin, whose smart, articulate parents fought like hell to get her well, only to be turned down by insurance eventually? Anna committed suicide, and her parents took her experiences to the state insurance commissioner and to the courts and won not just money but also changed the way insurers in Minnesota cover anorexia.
We could do this, state by state. That's what it's going to take, probably, unless we can get the federal mental health parity bill passed.
I'm sick of "steps forward," though, and "making progress." We aren't making progress when it comes eating disorders. What will it take?