Information for parents of disabled children

Sunday, August 23, 2009

Healthcare for Dummies

I'm watching the debate with a skeptical eye. Skeptical doesn't quite cover it. Cynical? Disbelieving? Disillusioned? All of them are very good words for what I'm feeling.

You see, our place in the system as a family with an autistic child is pretty much written in stone. I've seen nothing that makes me think we suddenly have a place in the hearts and minds of others in our society. Mainly, this cynicism is because over the years I've heard it all.

When our family was on medicaid, we were "suckling at the government teat". That one amused me. When we got desperate and one of us volunteered to go to Iraq with his reserve unit, I was told once, "that others shouldn't have to subsidize my son's disorder", when discussing education and whether my son deserves one. This, in spite of our sacrifices, seems to be all I hear now. The Tri-care is gone, and life returns to the financial and medical chaos we lived in before this. What will we be now? A burden? A menace? Unfortunate?

This is why I only support a public option, though a true system of government health care would be better. None of this should be debatable, and, in other countries, I don't hear the same kind of debate taking place about whether diseases and disorders should opt you out of society. Autism is expensive in those places too, but the question of what makes a citizen valuable doesn't seem to be bandied about at every town hall. The emphasis is most often on prevention and helping people live productive lives and not on their monetary value as a person. When I go before school boards and superintendents and committees, I even find myself emphasizing the fiscal crisis of Autism and my son's future life multiplied by millions, just so I can make them care, make them act in their own interest if not his.

Is that all we've come to? A dollar amount? Because of his disorders, my son's health care is rationed right this minute. He can't get coverage even if we can afford the ridiculous premiums. His value is zero, according to the ones who get to decide. Insurance companies.

Mankind has indeed done terrible things to the weakest of us over the centuries which makes the argument of "death panels" seem possible, if far-fetched. I submit that this happens regardless of who has that authority because we fear disorder and those who have them. They are uncomfortable reminders that we have weaknesses.

We're afraid of it. Recently, citizens in Indy came out against an assisted living home for kids like mine citing NIMBY- not in my back yard. School districts cut services at every opportunity for children with IEPs in this state. Insurance companies refuse anyone with seizures in their history. It's all discrimination, and it's what we're really fighting about.

We need to stop arguing about value and cost and decide what we really believe. Is there a point where we lose value? God, I hope not because we will all be old one day. Is there a concrete way to determine value? Value is subjective. My son means everything to me and nothing to someone in Washington D.C. or Houston or San Diego. Our society has to make up its mind. What do we believe? How far will we take that belief?

I'm about to make some controversial statements. Prepare yourself. First, one can NEVER be pro-life and anti-health care. It's contradictory because a "person's a person, no matter how small" cannot apply only to the newborn fetus and must also be applied to the homeless man on the corner or the emotionally disturbed child in the classroom. If it's not applied to everyone, then we've made a person have numerical value. Second, "death panels" are nothing to fear in a society that will condemn them and resist them, as I believe this one would. Children diagnosed with disability are no longer institutionalized as the first resort and forgotten. We did that, and I have every confidence we can make the same kind of changes with special education and health care as long as we find the will. Finally, everyone out there marching against health care reform is assigning that value to someone else. I'm sorry, but that's how I feel. It's not about shutting you up. It's about disagreeing with the arguments when we have so many who need our energy put into helping them, not devaluing them.

Put down the signs and start hitting the books. Because we're all headed for trouble if neurological disorders aren't checked. There's been a GLOBAL increase in epilepsy, did you know that? Did you also know that we don't really know what causes it and it can be developed at any stage of life for no apparent reason or from all kinds of apparent reasons no one really understands? Did you know one bad seizure could make any of us disabled in a heartbeat? Now, be afraid. Be very afraid, and start working on solutions, people. We're burning daylight.
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