There’s an interesting article in the Rocky Mountain News this morning about a family with two severely disabled teenage boys, Mark and Eric Stahlman. They were born 3 months prematurely 16 years ago–something that could happen to any pregnant woman. Their mother, Kelly Stahlman, calls her life since their birth a long and difficult lesson in “‘the business of disability,’ and it’s more than a full-time job.”
There are piles of paperwork: years of documentation of the more than 20 surgeries each of the boys has had to release rigid muscles and fuse bones, records of their condition, back-and-forths with insurers over who would pay what.
At one point, her husband Bruce’s company called to say that the family had already used $400,000 of their $500,000 lifetime benefit.
“What are you going to do next month?” they asked.
Mark and Eric were just a year old.
This family, which has two apparently well-educated middle-class parents in the home, managed to get their children on Medicaid, which pays for much of their care:
15 medications a day, nine different doctors for physical and occupational therapy, speech therapy, vision problems and neurological and orthopedic issues. They both use wheelchairs and are fed through tubes. They require around- the-clock care. Their room is a mini-hospital, with special beds, breathing machines, oxygen tanks, a power lift to get them from bed to bath.
“I never dreamed I’d be a Medicaid mom,” Stahlman said.
No–no one does. People go on Medicaid because they need to. The Stahlman family’s middle-class status and their cultural capital undoubtedly help them work the system in ways that are likely impossible for people with less education, less time, and fewer skills. That’s not to say it was easy for the Stahlmans–far, far from it. That’s merely to highlight how difficult it must be to navigate these shoals without their advantages. The Stahlmans have done a remarkable job with their boys, both of whom attend high school now, and who want to live productive lives as adults. Kelly Stahlman’s experience with caring for her sons has effected a policial conversion:
She had always been a conservative Republican who thought of taxes as a four-letter word. That was before Mark and Eric, before the reality of caring for two children with severe disabilities hit home.
Now, she supports Amendment 51, which would increase a sales tax of a fraction of a percent to raise $186 million for services for the disabled. Colorado’s spending is one of the nation’s lowest, and more than 8,000 are on waiting lists for immediate services.
“It’s not a free ride,” Stahlman said. “Everybody that I know is doing good work and hard work and trying to take care of their own. But everybody sometimes needs a little bit of help.”
Health care in this country–where people (or their employers) are expected to purchase private health insurance from for-profit companies–is based on two flawed assumptions: 1) that health care is a private responsibility rather than a civil right, and 2) that human bodies are essentially healthy, and that disease and illness are exceptional rather than typical. But, if health is not a right but rather a privilege for those who can pay for it, why do we have the FDA to ensure the purity of our drug and food supply, the EPA to protect our air and water, and consumer protection laws? (Please note these three things are also things that right-wing Republicans have targeted for attack in the past twenty-eight years.) We’re already “socializing” a lot of programs and agencies that work to protect public health–why draw artificial lines around health care for individuals?
This question brings us to objection #2: many people are resistant to national health care plans because they believe that their money will go to pay for someone else’s sins against good health–sloth, gluttony, and smoking being the three unforgivable Deadly Sins according to even secular people in our society. And, yeah, they’re right: your money will pay to provide health care for some people who haven’t always made the “correct” decisions (according to you!) about how to treat their bodies. Teetotaling Mormons and Muslims will pay for other people’s alcohol-induced diseases. Non-smokers will pay for smokers’ diseases. Thin people will pay for obesity-related conditions suffered by others. Zero-population growth people will pay to subsidize other people’s prenatal care and childbirth expenses. Democrats will have to pay for Republicans’ health problems, and vice-versa. But, given the choice: would you really trade places with a sick person in the name of getting what you paid for?
And in any case, who among us is free of sins against the body? Think about it: you’ve also had more alcohol than you should have, you’ve also forgotten or refused to use a condom on occasion, and you also smoked in college. Maybe you’re more than a little out of shape or overweight, or you tried illegal drugs once or twice…and the reason that you’re still healthy, and someone else is not, is because of dumb luck, not because of your superior judgment and virtue. You also can’t take credit for having selected ancestors who don’t have histories of cancer or heart disease, nor can you take credit for the random good luck you and your family had if you were born with all of your chromosomes in the right places.
Even if you exercised superior judgment and flawless virtue in taking care of the healthy body you were lucky to be born with, there’s a little something down the road that you may be denying. Everyone runs out of time. Everyone’s body breaks down, decays, and doesn’t work the way it did sixty, or seventy, or eighty years ago. Guess what? If nothing else kills you sooner, nearly all men get prostate cancer at advanced ages, and nearly all women get breast cancer. I guess we could blame you for being so fit, staying sober, and eating so well that you avoided death by surer, quicker ways like drunken car accidents or massive coronaries that we now have to look after your prostrate or breast cancer treatments in your 80s and 90s. (See how that works? It can always be your fault! Always!)
Memento mori, friends. Death is democratic. Work for single-payer health care. (I’ll catch you later–I gotta get my morning run in!)
Historiann 
I’m not generally a big fan of government ownership, but I’m thoroughly in favor of completely socialized medicine.
We’re overall healthy, plus have health insurance. But even a healthy pregnancy and delivery is expensive. (I nearly died when I got the bill for the epidural, even though I was only co-paying 10%, and vowed I’d suck it up and live through the pain next time.) At 2, my daughter needed exploratory surgery to determine whether she was allergic to gluten. Those are really the only major expenses we’ve ever encountered, thankfully, and the price doesn’t compare to something far more serious. It’s easy to balk when it’s not your problem, without realizing it’s simply not your problem yet.
I once was chatting with a fiscal conservative friend, who was adamant that a socialized medicine system would never work. It wasn’t so much that she didn’t want to pay for other people’s problems. She supported her elderly mother, who had osteoperosis, diabetes, was nearly blind and very deaf, and various heart conditions; she was very familiar with the expenses involved with that, and grateful for Medicare. Rather, her stance against socialized medicine was rooted in a belief that it wouldn’t work well (long lines at doctors, bad administration), definitely influenced by conservative talk radio but also reinforced by her experiences with Medicare’s red tape.
Good health isn’t a privilege. Making it a right — socializing health care — won’t really be simple for a number of reasons. Regardless, I think it needs to happen, the sooner the better. (I also just re-read The Jungle, which tends to make me slightly communist for a few weeks. Go Socialized Medicine!)
(And, skull-wing gravestones are awesome!)
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God damn, H-Ann. The bit about dumb luck — that’s some good stuff there.
I’d only add to that: are we really prepared, as a society, to continue down the road of separating the “deserving” from the “undeserving”? This is what’s always bothered me about some parts of the abortion debate, for example: that there are blameless victims who deserve to have a choice, and nasty sluts who don’t. I guess this applies to health care: there are virtuous nonsmoking, exercising teetotalers who deserve help when something inexplicably breaks down, and undeserving folk who deserve whatever’s coming to them. (actually this is the logic of transplant lists)
(H-Ann makes you seem like an H-net group — sorry!)
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Amen, sister!
Who the hell am I to judge how or why anyone else got fat, developed cancer, or had a heart attack?
And I could not agree with you more that healthcare should be a right, not a privilege.. I found it disturbing that not just McCain, but also Obama, clearly dodged that question in one of the debates. I think Hillary was on a better path with heathcare reform, alas..
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I guess you can tell that I’ve dodged my share of bad luck, mostly when I was young and reckless but certainly knew better. But I recognize that it was only great good luck that I never had an unplanned pregnancy, I never caught any “social diseases,” and was never attacked or raped when I was a drunken college (or grad school!) student. Luck, not better behavior or judgement, is why I dodged those bullets.
And, H-net discussion lists are what we had before blogs! I wonder why they don’t just turn all of those discussion lists into blogs, which are more fun and visually more interesting. (I suppose that one can post anonymously or pseudonymously on blogs–that’s about the only major difference I see, but H-net could require people to post or comment under their own names.)
Nice to hear from you SIL in Maine–yes, HRC was the only major candidate who was talking complete sense about health care reform. Ensuring that people will get heath care regardless of their employment status, and ensuring that health care will not bankrupt individuals, would be something that would increase people’s confidence in our economy in these perilous times. I’ll remain hopeful that Obama will seize his moment to effect change, but all we have is “Hope,” and hope is not a health care reform plan…
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That preemie baby of mine that I mentioned in my earlier comment was in the hospital for almost 6 weeks. A single visit from the NICU doc cost $2400. Luckily, I didn’t have to pay a dime. But when I expressed my horror to my OBGYN father in law, he said those costs were inflated-doctors bill more because they know most insurance companies will only pay a portion of the bill. Unfortunately, the uninsured get a bill for the full amount, and there’s no one to negotiate it down on their behalf.
The notion that universal health care would result in less expensive health care for everyone is so logical, I really don’t understand how anyone can object. Except those people who are convinced they will never, ever get sick, I guess.
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@e.j. — that’s a very good point. When I had my second child, it was at the same hospital. In the few years in between, I was still covered by Blue Cross Blue Shield, but the plan and account number specifics had changed. The hospital sent the insurance company a bill under my old account number since that was what was in their system (why I’d had to fill out pages of paperwork while in labor if they were going to ignore it, who knows). This resulted in the insurance company paying nothing, but the hospital still only charged me the “insurance company” rate. Multiple frustrating phone calls later, we got all the appropriate co-pay stuff sorted out; however, I now know that if I’m ever without health insurance, I just need to lie and pretend I *do* have insurance so that I can at least get insurance company rates.
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Amen, sister. I am so with you. This afternoon I was talking to my brother, who had just visited my father in Canada. He has all the multiple problems that are common in those in their mid-80s, and his care has been terrific. They went in for an ultrasound, and he didn’t have to wait more than 5 minutes when he got there. We say prayers of gratitude with great regularity that he lives in Canada and has Canadian health insurance. And for the record, yes, he had to wait for elective knee surgery, but anything important has happened really quickly. He’s even being monitored by a geriatric consultant.
As for the bills here — it’s just incredible. Watching bills for David’s cancer is just terrifying — easily $10,000 a month on chemo; his first surgery — with 6 days in the ICU — was about $200,000. We paid about $10.48 or something ridiculous like that.
One of the best things Obama has said is that if you were starting from scratch you’d go single payer. My hunch is that we’ll get there slowly: once you open the government system to small businesses and individuals, it will begin to cover more and more, and it will become the national system. It may take 10-15 years, but it will happen.
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Susan, it’s interesting for me to note that the people I know who have direct experience with the Canadian system have only good stories to tell. It’s always someone’s sister-in-laws best friend or someone’s brother’s childhood best friend’s stepfather who had a terrible experience–no one that the story teller knows personally. I have no doubt that the Canadian system needs vigilant monitoring and that there is room for improvement, but I’ve never heard Canadians or their immediate family members complain about the structure of the system or the delivery of care.
Think of the economic security such a system gives people. Think of how it opens the door to a real free market job market, where no one stays in a job because they need the health care plan. Erin was lucky that her insurance covered her baby’s needs. Until we have a saner system, I fear we’ll have to take Erica’s advice about gaming the current system: fake it that you have insurance. (Of course, that’s easier to do if in fact you’ve had insurance recently…some people may be in dire enough straits that their claims to being insured will not be believed.)
But, I guess that feeling of security is only important for Wall Street banks and insurance companies…
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This is a really great post which should be published as an op ed in the Sunday Washington Post.
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Pingback: I Can’t Help Myself « Professor Zero
Hey–thanks Prof. Z! And it never will be…
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I have had several experiences with the Canadian health care system.With two very elderly parents in BC neither they nor I was ever worried about how much things would cost.Worry about cost can certainly have an adverse effect on recovery.
A very close friend had symptoms of bowel/GYN disease.She saw her primary care MD in early December, was scheduled for an MRI in March.Fortunately she was working in a medically related field and was able to have strings pulled and had a cancerous growth removed in late December.No chemo, no radiation, no bill.This was also in BC.
I make reference to which province since I believe that all is not equal across Canada. I do know there are difficulties in finding a family practioner in both BC and NS.
I truly believe that if HRC had tried to get a programme for children rather than the entire population we would now have a form of universal health care .As an ex-pat I have observed that you can more easily nibble at the American public than ram programmes down their throats.
Susan, I am glad you are pleased with your father’s care…one less thing to worry about.
As a woman of a certain age, medical care becomes of prime importance when thinking of moving north if McCain /Palin wins, that and persuading three other families to move there too!
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I’m glad you, too, Ex-pat, had good experiences with the Canadian system re: your parents. As for the difficulty in finding GPs in BC and NS have to do with the urban/rural divide in doctor availability that plagues this nation too. (Doctors don’t want to live outside of major metro areas, which is why sometimes docs who move off the grid, as it were, get educational loan repayments and other financial incentives…) I would imagine that it’s pretty easy to find docs if you live anywhere from Toronto to Quebec City, and maybe in Vancouver, but outside of those cities, it’s probably harder.
You make a good point about the Clintons’ abortive health care reform of 1994. Both the plan and the process were very flawed, and the Clintons didn’t understand that congressional Dems wouldn’t necessarily throw themselves on their swords to get the thing passed. The CHiP programs, passed in the late 1990s, did a really great job of providing children with health coverage–that suggests that you’re right, that’s where she should have started.
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As a Canadian, one of the most eye-opening experiences I’ve had since introducing myself to the blogosphere back in April has been learning about the impact of ill-health on Americans. One more thing that has to do with luck is which health care system you get born into. I have learned to be even more grateful for mine than I was before. Every now and then a Canadian complains about smokers and others who cost taxpayers money by mistreating themselves. It’s rare, in my experience. I think that most of us realize that if we fall into victim-blaming, we’ll end up disentitling lots of people in those cases where blame can conceivably be laid and I don’t think anyone wants that.
I will say that I have plenty of criticisms of my health care system and I think they’re deserved. We don’t have enough family doctors and that’s the government’s fault, at least in part. It does take a long time to see a specialist but often that’s because many of them have gone to the US to make the really big bucks – not that they experience poverty here! Our system is under-resourced because of government belt-tightening under pressure from people who don’t want higher taxes. And it’s under threat from people who think that universal health care can somehow exist alongside a private system for those who can afford it. It can’t. But most Canadians would defend the health care system even at some cost to themselves. Several years ago, the man who founded the “socialized” universal health care system in this country, Tommy Douglas, was named the greatest Canadian in our history. That’s greater than Wayne Gretzky even! And that’s something.
There have been many serious illnesses in my family, including my brother’s death from leukemia when he was six years old, in 1968. If my parents had been forced to pay for his care, none of us would be where we are now. They didn’t have to pay a cent, not even for clinical trial drugs. Thank you Tommy Douglas and I hope his spirit is out there somewhere, inspiring Americans.
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This thoughtful post is greatly appreciated–especially in this season of decision. It was great to have this in the disability blog carnival.
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Thanks, terri, for stopping by to comment!
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