Socialism, Fascism and Health Care

I have a child who is uninsurable. As with so many millions of Americans, she has a "pre-existing condition." Simply translated: "known to actually use medical services and therefore predictably too expensive." Recently I learned my job is in jeopardy, and like millions of parents with children with disabilities, did the only thing I could. I panicked. 

Socialism is flung about as a dirty word by those opposed to changes in the flow of money through the healthcare industry. According to the Encyclopedia Britannica, socialism is based on the ideals of democratic, “non-coercive communities working non-competitively for the spiritual and physical well-being of all.” That does not sound so bad. Almost like church. 

On the other hand, Fascism includes a “…militaristic nationalism, contempt for political and cultural liberalism, a belief in natural social hierarch and the rule of elites and a desire to create… a community in which individual interests would be subordinated to the good of the nation.” That sounds familiar in a not-so-nice way. 

Competition has its place. In a well functioning market we see contained costs, customer driven prices, availability, and productivity. But competition implies losers. Who wants to lose in the health care race? Who wants to even chose who should lose?

The thing is, insurance is not the same thing as medical care. Medical Insurance is a profit driven, competitive business that makes money by charging more for medical services than they actually cost. Insurance companies would have us believe that we Americans have the best medical services in the world. That is a half truth. Some Americans have excellent medical care. But millions of Americans have none at all. Most Americans who have medical insurance are healthy, able-bodied and inexpensive to insure. 

Here are case studies from my family (where everyone is actually insured):

My permanently disabled eight-year-old daughter waited three years for a commode (that is a grown up potty seat). For three years she was unable to use the toilet and had to soil herself. Five years to get a speech generating device (still not approved) and six months for a wheelchair. Physical therapy? Denied for the third year in a row. Her illness is progressive, but she is likely to survive for decades. As hard as it is to say as a mother, she probably will not get better. Her disease is being studied by private foundations and a small grant through the orphan diseases project recently begun at NIH. Insurance companies and government agencies all have layers of bureaucracy to screen her expenses and deny what they can. 

By way of contrast, my father developed small cell lung cancer at age 65 (he was a smoker). He received top of the line cancer care. The research for this disease was initiated by Nixon, who started the "war on cancer" that continues today through private and public funding. That prolonged his life several months at a cost of $75,000 per chemo treatment (dozens) and several ICU stays. Following his treatment, he received emergency surgery for an aortic aneurism, a surgery that has fifty percent chance of leaving healthy patients gravely disabled. If they survive. The average survival rate is 6 months and the average cost is 2.5 million dollars. Typically, he faired poorly and spent the remaining several months in ICU. Thankfully, he had excellent care and never wanted for anything. While on the floor he had 24 hour nursing care, a respiratory and physical therapist, cardiologist, pulmonologist and intensivist a commode a wheelchair and a walker. The most likely outcome from the beginning (as hard as it is to say as a daughter) was that he would not survive more than five years from his first diagnosis.  

Why was it so easy to get top of the line care for my father, but not my daughter? Even when they had the same insurance companies, it was always harder to get care for her. Layers of bureaucracy  lay between her and the simplest of procedures while he had a liaison in hospital who provided case management. In essence, they both needed similar care: physical therapy, feeding, changing and medication management. 

The answer is simple, but cynical. He was profitable. She is not. Insurance companies are not there to provide care, they are there to make money. In a free market system, his care made money, her care continues to lose money. He needed that level of care for a couple years after needing little for a long time. She will need a lot of care for a long time. 

In the real America, Main Street America, you get medical care if, on balance, you don't cost too much. That is fascism. It used to be a dirty word.

I think, on balance, I may prefer a single payer system. Call it socialism if you want. I will call it providing for the physical and emotional and spiritual well-being of the nation. I will call it family values. You might too, if someone you love actually needs medical care, not just insurance. 

Autism and epilepsy

According to National Institutes for health, nearly one third of people with autism have epilepsy. This is the case with my daughter, and some of her friends as well. 

Epilepsy is a poorly understood phenomenon among the general public, and for many people, witnessing seizures is frightening. We have had enormous difficulty finding day care for our child because most sitters and agencies are fearful-- not unprepared-- to handle a child with epilepsy.

The current policy in California's education code, which requires a licensed nurse to administer Diastat during a seizure and prohibits non-licensed persons (including first responders) from giving it, increases the stigma around epilepsy and creates legal barriers to community activities (like field trips) and settings (like recreation programs) for children with epilepsy.

Diastat is valium suspended in a gel and administered rectally (uh, blush, blush, in the bottom). Nurses apparently do not object to Ativan delivered sublingually (given under the tongue)-- same drug, different route. Ativan given under the tongue during a seizure increases the chances of choking, aspiration and secondary pneumonia. It simply is not safe. Our doctor reacted by saying "are they trying to KILL her?" when we explained the situation to him. Diastat is the most effective, safest emergency medication. It just has to be delivered through the rectum and that is, well, embarrassing, perhaps. The nursing position statement is quite clear that student privacy is an important issue to nurses. 

Personally I don't care how many people see my kid's bottom if it means she won't choke to death. Maybe I am just insensitive. 

Parents have confided in me that they do not tell providers that their child has epilepsy until the last possible moment (walking out the door) because they would never be able to hire anyone. Parents also have chosen to use less safe emergency medication (Ativan) in place of Diastat, in order to get around the nursing requirement in the Ed Code.

This policy is also looked to by Regional Centers and daycare centers. It means that children with epilepsy are often barred from participation in community settings unless they are attended by a nurse-- an unnecessary financial burden and barrier. 

Please join us in contacting you local school boards and legislators to have this policy changed. 

Family seeks a great nation

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.