Jeneva, a brilliant writer and mother to a child with multiple disabilities, has written such an excellent and eloquent blog post, that I asked her permission to cut and paste it onto my own blog. I didn't want to run the risk of anyone NOT clicking over to it. She posts regularly at Busily Seeking...Continual Change.
Thank you, Jeneva, for articulating what is so very difficult.
A few months ago, I answered a fundraising call from the DNC (Democratic National Committee). This was during a period when Majority Leader Reid seemed to be looking for any excuse to bury healthcare reform. The DNC representative urged me to give money so that the Democrats could "fight" for me. I pointed out that the Democrats were doing no such thing at the moment, that my husband and I paid out close to $15,000 every year, despite what is considered to be top of the line insurance, to care for our severely disabled son. When they did something about insurance coverage, I said, perhaps I might have money to give.
The man from the DNC and I got into a heated argument, during which my position was, I'll give you money when you prove to me you're serious, and his position was, we can't do anything unless we have your money. In the end, he hung up on me, mid-sentence.
And, despite some encouraging rhetoric from the President in the SOTU address, that about sums up healthcare reform for me: initiated by a party that keeps raising the bar on what it might take to give them permission to govern such that I expect them to argue soon that only the second coming of Jesus himself will give them the authority to act.
And, most importantly, a party that is content to exclude the sick and disabled and their caregivers (mostly women) from having a voice in the formulation of healthcare policy. Even in SOTU, the President emphasized the need for wellness and preventative care, without really addressing what it means to be living at the other end of the spectrum in Non-Covered-Medically-Necessary-Item Land. Every year. For us, it will be 17 years total in the end (Robert will quality for Medicare at 18)--unless states get more Medicaid funding--the waiting list in Maryland for various services for disabled kids is close to 2,000 people.
All others have been brought to the table: health insurers, big pharma, labor unions, economists, business leaders, and the like. Time has been wasted on Republican Senators like Olympia Snowe, who is content to fiddle while her own state burns at the mercy of big insurers (the State of Maine is suing Blue Cross, which has a monopoly in Maine, to prevent them from raising premiums). Joe Lieberman, who is no longer a member of the Democratic Party, is suddenly the most powerful person in the party. Max Baucus and Ben Nelson, who seem to care only about their futures sitting on the boards of insurance companies and collecting the big bucks, have wrung the justice and human compassion out of what could have been real reform. Economists shrug that only a small number of people will have negative outcomes under the Senate bill, glossing over the fact that it is the sick and disabled who will suffer under "reform" compromised further each day.
And yet we stick with 'insurance' rather than moving to 'healthcare.' What I have seen over the years is a health insurance industry that is dying because it cannot deliver what insurance really is, coverage in the event of catastrophic loss, and sits content to gut catastrophic care in favor of $10 office visits and free generic antibiotics. Essentially, these companies are, to some degree, culpable for the economic decline of the last five years, as culpable as banks that made irresponsible loans. Making people pay for a policy that will not adequately cover their expenses in the event of major illness is as craven as encouraging people who cannot possibly cover a mortgage to undertake that debt. But both industries survive, despite irresponsible behavior, because they are propped up by Congress, lobbyists, and big investors will to run up short term profits at the expense of long term sustainability--in other words, to make a quick killing (literally) on the stock market.
But the message to those of us who care for sick and disabled family members is to shoulder more personal responsibility--this is the message of the "Cadillac" plan tax, and, often, these plans are the only remaining comprehensive insurance plans on the market today. There are people in the U.S. who've taken jobs for lower pay or are afraid to leave their jobs and develop their careers because they've managed to land a job with a company that offers stellar health benefits. The difference between leaving such a job and pursuing your own dreams is in the form of personal bankruptcy.
Or, we're told that the rising costs of health insurance are the fault of people who need 'frills' covered, like medical supplies (as Harry Reid is alleged to have said), or who aren't making good choices about costs to begin with. Listen, when your employer chooses your benefits, you can't shop around. And when your child needs to go to certain specialists, especially if they're critically ill, you rely on the advice of the doctors already treating them. Taking care of a sick kid isn't like reading Consumer Reports to buy a car or a blender. And when your insurance company only includes one in-network medical supplier and you call the benefits people and they don't understand what enteral feeding supplies are and, therefore, don't have a clue about what other companies might provide those supplies--um, you really can't shop around.
On top of that, people like former Obama campaign manager, David Plouffe and various Senate aides have been stirring up fear by implying that it would be a jolly compromise to restrict lifting the pre-existing condition issue to children only. Which begs the question--how on earth are you supposed to care for your kid when both of you have pre-existing conditions, and you're the adult, and you're supposed to maintain your health so you can keep a job?
The bottom line is, the Democrats (like their Republican counterparts) who are formulating policy have little feel for or interest in how social policy really affects people. It's all a numbers game; it's all super-jock economics. Really. In a policy world in which the foreign affairs people are the BMOC, the equivalent of the star football players, and 'domestic' policy makes many male legislators cringe as though they were being asked to handle a used tampon, how can people count? In a world where David Brooks is still trying to pound his gender-based theories about mommy parties and daddy parties? Please. Can't we stop dividing the policy world into little buckets of gender-phobia? Aren't we all just 'parental' one way or another, 'parental' in that we all assume some responsibility for the working of society?
But, yes, my point, personal responsibility. For over 10 years, my husband and I have put aside our own needs to chase down ever-receding 'good' health insurance policies, switch jobs to avoid hitting life-time limits, and argue with unscrupulous companies like Cigna and Kaiser. Readers of this blog may remember that Cigna assigned us a case manager who verbally abused Robert's physical and speech therapists, trying to bully them into denying Robert care--the case manager who said, oh, Robert doesn't need to learn to eat because he has a g-tube. Kaiser denied coverage for the tube-feeding 'button' that acts as a port for food and water--without which Robert would be dead--it wasn't in our contract. When I pointed out how medically necessary this was (what is more medically necessary than the line between life and death?), the representative said not everything medically necessary was covered. He expressed regret for the possible outcome of Robert's death, but said that, on the bright side, the extension tubes for the button were covered.
And yet the talking heads, the legislators (Republican & Democrat alike), the president, his advisors, and the economists continue to talk as though insurance premium price increase can be solved if we just give people incentives to move to lower-cost plans--which are, as I know only too well, lower-benefit plans. Cover the healthy, abandon the sick.
You know, I worked hard all of my life to attend a good college, get good grades, earn scholarships for grad school, develop a positive and responsible work ethic, and I am, in the end, a highly-skilled individual. But this country's 'domestic' policies are designed to minimize my ability to support and care for my son, minimize the contribution I can make in the work force, and minimize my ability to keep my own independence. 'Go broke,' was the advice of one of my friends, a friend who worked on Capitol Hill for a long time, 'that's what most people have to do.'
Personal responsibility matters not a whit if that's the policy answer. Hey, I'm here, I'm working, I'm contributing, but the costs that I'm faced with, both social and economic, are beyond the scope of normal human endeavor. And that's the case with so many of us who struggle with educating and medically treating our disabled children.
When faced with the worst crisis of our lives, our son's sudden descent into life-long disability and illness, my husband and I did not shirk our duties. We stood up and fought. And we keep fighting, even though it feels like a losing battle at times.
And I want to know when the President I helped elect, and the congresspersons I voted for are going to do what's right, with no compromises to the insurance industry. I want to know when they're going to take their responsibilities seriously. SOTU is a start, but it's still just rhetoric.
