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Posted Dec 24 2008 12:00am
http://specialneeds08.blogspot.com/

I wanted to encourage folks to check out Mark's blog. It is really cool. He has spent some time working on policy issues (check out his profile and myspace page!) I read his article about military families having difficulty getting health care for children with autism and felt connected to military families in a new way-- we have a shared struggle when it comes to our kids. 

A few things are clear to me as I struggle to find resources and services for my daughter. We are all in this together, in a terribly isolated way. We have a shared struggle but not yet enough organization. 

First, every agency and health corporation has a stake in denying services to her. They know if they deny, they protect their budget, and "someone" will cover her needs-- or more likely the family will give up. For example, in trying to get a speech generating device for our daughter, we orginally went to the school. They denied, so we went to Regional Center (in our state, they are funder of "last resort".) Regional Center told us to appeal the the school, school tells us to appeal to Regional Center. For three years we got stuck in this loop. 

Second, for profit health insurance companies make money by denying services. A percentage of our premiums go to shareholder payouts-- money that could be spent on health care in a non-profit or single payer system. It is wasteful and inefficient if the purpose of health care is actually to provide care. A single payer system may not be perfect, but at least we would not have the conscience crisis of knowing that kids were denied health care so that share holders could get their cut. 

I know I am stumbling into a partisan issue here. But I want to raise this issue. Strict constitutionalists are against interpreting the general welfare clause to mean, well, welfare. Consider this though. The maternal mortality rate in the 18th century was about 25% -- read that as one in four women died giving birth. And the infant morality rate was even higher. My grandmother a century later had thirteen babies. Eight survived to adulthood and of those, six died of influenza during the Spanish American War.  Adults typically died in their forties, often with "their boots on" from illness, accident, warfare and, yes, age. Senility was rare. Most of the diseases we think of as age related (Alzheimer's, Parkinson's, cancer) were unknown. Who lived long enough?

We are so far removed from the experience that we simply cannot imagine it. 
We today are heartbroken (understandably) if one of our children dies. Parents sue obstetricians frequently if a child is born with CP or another disability that might be attributed to a birth injury. My father died at 60-- before he retired-- and we were shocked. He was so young. He should have had many good years left...

And it is hard to imagine that Jefferson, who lost his wife to childbirth, could imagine our world, where perinatology and neonatology have advanced to the point that premature babies of 28, 27 even 26 weeks sometimes survive. That they survive at all, and thrive, even with complications and disabilities like visual and hearing impairments, respiratory ailments, intellectual disabilities, is an artifact of medical science and social change. Or that someone with a spinal cord injury could live... for twenty, thirty or even forty years. 

The founders could not imagine this. And it is hard to know how they would have approached the social issues that these advance raise. At a time when the solution to an economic downturn was to follow the calvary west and claim newly depopulated lands, shoot a quadriped and put up the meat and wild vegetables for winter, when people like my daughter would have died young due to bedsores, seizures, starvation... it is hard to know what they would have seen as solutions to our current dilemmas. 

How would they have resolved the sanctity of life versus the spirit of independence and individualism that we attribute to them? We have a few clues. One clue is that when social issues were too hard to resolve, they left them to the states and future generations to solve. Like slavery. And women's voting rights. And the states and private charities took some of these issues on. And created great institutions like orphanages and insane "assylums." I guess they really did not want to deal with it either. 

I think we will have to think for ourselves. Be the grown ups in our own time. I am fully in favor of drawing on the wisdom of our ancestors-- but also recognize their short comings. How can we use the checks and balances, the evolved powers of the administrative and legislative branches of government to solve the deeply challenging problem of caring for the vast numbers of children and adults with disabilities? How can we do better than they did?

One thing I am sure of-- one of our great adaptations as a species is our ability to cooperate, form social networks, divide labor and work together to build societies. Animals solve some of these problems by eating their young and banishing adults. Humans build hospitals and fund Medicare.

Now we need to think carefully and talk together-- as if we really wanted to hear each other-- about what kind of society we can make. 

Because my family can't move any further west in search of game and a place to live. We are already in rough seas, nearly over our heads. And we need a social network worthy of our daughter.




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