Some of you may know that my daughter, Virginia Grace, is losing her health insurance, most likely on Tuesday. We have been through so many hoops with TN Care, SSI, TN Cover Kids, and tried everything we know to do to help insure that she's insured.
A little background on Virginia Grace: she was born with a cranio-facial disorder called Pierre Robin sequence, and has been diagnosed since then with many many disorders that have required and will require more than a dozen surgeries, a tracheostomy, a gastronomy tube, through which she gets 100% of her nutrition (medical nutrition), speech therapy, occupational therapy, and so on. It was discovered last week that she also has a very very rare genetic mutation, one that we (and her geneticists) are just beginning to learn about. She will require surgery within the next few months to repair a fistula in her neck. She is one big pre-existing condition. (To read more of our story, click here.)
We are losing her health coverage because the state of Tennessee recently won a 20+ year court battle which allows them to push Medicaid-eligible people off of the TN Care rolls. Because we adopted Virginia Grace (instead of permanently leaving her in the foster care system, a situation which would have had the state paying at least double what they're paying now), she no longer receives an SSI check, though she is medically qualified as disabled. Because she does not receive an SSI check, Tennessee is no longer required to cover her.
We have appealed both the TN Care and the SSI, and are waiting for the appeals to go through. The TN Care appeal is on Tuesday, though the SSI determination may be months coming; the former is dependent upon the latter. Between the time that TN Care terminates her insurance (she was actually terminated on February 25, after only two weeks notice), and SSI does or does not deny her SSI, we are in a lurch. Because we elected to keep her coverage during the appeal process (with the caveat that we will have to pay back all of the many expenses accrued in the interim), we were denied by Cover Kids, the organization which is supposed to be the next step for her (with significantly decreased coverage and SIGNIFICANTLY increased out of pocket). Our private insurance would cost us almost $1000/month to add her. We simply cannot afford that.
Why am I telling you all this? I know that many of my friends come from disparate political positions, and I know that there are no easy answers to this problem, for anyone affected. But what I do believe is that this isn't just about "pushing through tort reform," and "allowing businesses to reward workers who have a healthy lifestyle," or "being able to purchase health insurance across state lines." I also believe that small businesses cannot bear the burden of the costs. I frankly don't know what the answer is. But what I'm asking, or hoping, is that people talk about it, think about it, and when people talk about it they think of Virginia Grace.
Please feel free to share our story . . . because we're not the only ones.
Click HERE to tell YOUR congressperson who you're inspired by.