Last night, Nashville's NewsChannel 5 covered another story about TennCare and disabled kids. The Hamby family's story is very much like ours (except that their son has had 21! surgeries, making Becca's 5 look pretty measly). Little James will be losing his TennCare coverage as of January 1st. (I'm not sure why had got to keep his so long when most of us were kicked off early this year.) His mom stays home to take care of him and to shuttle him to doctors' and therapy appointments, and his dad works 4 jobs, one of which is as a public school teacher. Even with their private insurance, the co-pays and excluded items will cost a great deal of money, and they are afraid that even with dad's 4 jobs, they won't be able to cover it all.
These are not irresponsible people who have made poor decisions. They are (or at least appear to be -- I don't actually know them) hard-working people who had the misfortune of having a son born very early. (In the piece, the reporter says that he was born 5 months early, but I'm guessing what she really meant was that he was born AT 5 months - 23-24 weeks, as opposed to 20 weeks gestation. I could be wrong, and people have assumed that Becca's birthweight is a typo before, but I think I most likely would have heard about a surviving 20-weeker born in the mid-state area.) They didn't choose this path, and they are doing everything they can to give their son the best shot at living up to his potential. But then, due to "budget cuts," the state pulls the rug out from under them, and they will likely have to begin choosing from among the many therapies, appointments, and/or procedures, all of which are contribute to giving little James the best shot at a normal life - and, if you have to think about it in economic terms, the best shot at becoming a contributing member of society, functionally and financially. Sure, in the article you hear that a local business collected $1,400 for the family, and that's GREAT, but let me tell you that $1,400 will not go far. $1,400 won't even pay for 2 weeks of Becca's co-pays and excluded expenses.
I don't mention Becca's expenses and the community contribution to the Hambys to ask for pity or contributions. I mention it because it's evidence that we need a systemic, societal approach to caring the members of our community that cannot care for themselves. I don't want to get into a debate about people who other people think could or should care for themselves; I'm talking about people who flat-out can't do so. Good Lord, if we, as the wealthiest society in the world, can't care for disabled kids, what in the world is wrong with us? What's next, shooting golden retriever puppies for the fun of it? To me, this is one of the basic functions of government: to serve as a safety net for those members of society who can't meet their basic needs. And I'm also not talking about having the state pay to send Becca to Disney World or, oh, Harpeth Hall (though, HH folks, if you are reading and want to send a full scholarship our way, I'll be happy to share Becca with you in, oh, 7 years ;) ). I just want to keep my baby from being cut off from her health care.
Our private insurance does not cover any of Becca's feeding supplies (about $700/month) or her special formula (also about $700/month) or her growth hormone shots (about $1,000/month, but that will go up as her dosage increases), and it leaves us with 20% of nearly all covered expenses. 20% of her therapy costs is $822 a month (yes, that's the 20%, not 100%), leaving us with a grand total of about $3200 a month. Add in a pediatrician appointment, a visit with one of our nine specialists and a lab test of some sort (which would be a pretty slow month doctor-wise), and we're easily up to $3500. Multiply that by 12, and you've got $42,000 a year. What "normal" family can afford that kind of cash? Even if I do (crossing my fingers) find a job, we'll have to pay to put Becca in daycare full-time (and only certain daycares would accept her, mind you), which would run somewhere around $10,000 a year in these parts, which quickly tops out above the top range of my earning potential- and I have a master's degree. We have been very, very, very fortunate to be able to keep our TennCare coverage this year (for Becca - John and I don't qualify, and that's fine with us) because of our modest income, but next week I have our recertification interview. We could quite possibly lose our coverage in January, too.
Makes you think, doesn't it? Especially in a week in which Congress voted to extend tax cuts to the wealthiest Americans, essentially giving them $36,000,000,000 back in their overstuffed pockets, and to exempt the first $5,000,000 of an inheritance from estate taxes. Perhaps unfortunately for me, I don't know anyone who will benefit greatly from these breaks, as they are reserved for the wealthiest 0.1% of Americans.
I count among my readers some very conservative, very compassionate, very faithful and very generous people, whom I know interpret the role of government differently than I. Many of them would say that it's best to let people keep their own money so that they can distribute it to charitable causes as they see fit. And many of you actually put your money behind your words. But I guess I'm a realist (some of you will no doubt see me as a pessimist): I think that when left to our own devices, we hoard more than we need and we, the collected members of society, fall short in helping others meet their basic human needs. Often charitable giving is heartfelt and helpful, like the $1400 given to the Hamby family...but it's still a drop in the bucket for this family, and there are many more families like them. I have a dear friend who has long been a political and theological conservative, but lately she has tended to vote more Democratic because, in her words, she "had to stop voting based on how [she thinks] the world should be," with folks, churches, etc. giving enough to help everyone who truly needs it, "and start voting based on how the world is."
I would love to be proven wrong. If you count yourself among the super-wealthy (or if the IRS does), adopt James. Or Dax. Or Bella. Or Mary Farris. Or Becca. Cover their expenses. Go for it. I dare you. But I'm not holding my breath for you.
To the rest of you, who may not be plotting the best way to pass on your $20,000,000 estate to your kids, all I ask is that you keep these issues in mind as you ponder your political inclinations, as you vote, as you talk with friends. And if you're in Tennessee, maybe you could contact your incoming state legislators to encourage them to reinstate TennCare coverage for disabled children. Because, really, if we can't agree to help these kids, I'm afraid there is very little hope for any of us.