Tuesday, December 8, 2009

Freaking out a little... Okay, a lot.

It's 2 AM and I'm sitting here awake. We got a nice little letter in the mail today that is turning our little house upside down, and I'm freaking out.

Yes, I shouldn't worry. Yes, it's in God's hands. Yes, I get all that.

But when your son's quality medical care, equipment, therapies, and medications are all supplied by an insurance you've been promised he'll have until he's 21, and then that company says, "Ha ha just kidding," it freaks you out a little.

And that's what has happened.

When Daxton was born he automatically qualified for SSI and TennCare. We knew the SSI would go away once he was out of the hospital, and that's fine. TennCare, however, has been there all along to pick up whatever our private insurance does not pay for. Come to find out, our private insurance doesn't pay for a lot.

Things TennCare has picked up include home health nursing, medicines such as Synagis which are key in keeping him out of the hospital, speech and swallow therapy and physical therapy, equipment, such as his oxygen and feeding tube supplies, and all of our co-pays along the way. It's helped out tremendously in ways that you can't even put a price tag on... If TennCare had not paid for nursing, Daxton would have gone to daycare. How many times would he have been hospitalized if he had been around other children? How sick would he have gotten?

And the bottom line is, we don't want Daxton to be on the system forever. It's getting him healthy, and getting him caught up now that are important, so that one day he won't need any extra help. And he won't, God help him, if he's able to get the services now that he needs.

But, thanks to a federal court ruling in 2008, all the children who were placed on TennCare due to their diagnosed disability and long-term care in the hospital, but whose parents make too much money and pay too much in taxes and social security to actually receive social security, will be kicked cold-turkey out of the Tenncare system. And apparently very soon.

What does this mean for us? It means come January 4, 2010, my son will no longer be eligible. We will likely lose our nursing care, therapies, and will possibly be paying for all Daxton's equipment out of pocket unless we're able to get our primary insurance to pick up. Meanwhile, a baby down the street may still get all of those things because mom or dad choose not to work. That kid can get WIC, SSI, and TennCare. Mine cannot because we both have college degrees and choose to work and pay our mortgage and our bills.

How's that for a broken system?

So, needless to say, I'm taking the day off work tomorrow, err, today, and I plan on burning up every phone I can find until someone gives me some answers. For now, hopefully now that I've vented I'll be able to get a little sleep and be rested for the attack. In the meantime, please pray for us, and for the thousands of families just like us, who are going to be fighting this battle to keep our children healthy and taken care of... Because in the end, it's not about the mom or the dad, it's about the kids and their futures, and EVERY CHILD deserves the chance to thrive.


melbhaber said...

Oh, NO, NO, NO. I want to scream for you. You are not supposed to have to worry about bureaucracy and broken systems. I am wishing you strength today, and hope that you can get it worked out. I didn't realize how different the system is in every state. We were able to secure Medicaid for D because she automatically qualified for SSI, and the social worker at our NICU was really pushy and got me to get all the paperwork together before it was too late. I am fortunate that my private insurance has been OK, though nothing covers full-time nursing care and over half of my salary goes to our wonderful nanny who happens to be a nurse tech.

4 on the go said...

How crazy is that!

I am so sorry that you guys have had this blow and it makes me mad just thinking about it.
I hope you get some answers.
Doesn't it make you wonder about the system when in the UK ( and majority of other countries) you don't pay a thing. My boys were completely covered.

We will be praying that you get some help with things

Daxton's Personal Assistant said...

I've been on the phone since 7:30 this morning and still don't know anything. We're contacting the involved agencies as well as everyone who might know someone who knows someone... I don't know if I'll end up having to quit my job? If I don't and Dax goes to daycare I'll be off half the time with him sick anyway? Ugh. Yet our pediatrician says a lower-income family can get SSI and tenncare for their child if he has something as minor as ADD. The system sucks!

Christin said...

I am so sorry, please keep us updated. I can't not believe things we get punished for working and paying taxes and those who don't get free rides.

Laura (speaking for everyone!) said...

I got the same lovely papers to fill out- sometimes, it benefits just to love off the system.... go to school free and have people (like us) pay your bills). I hope they figure something out for you. It won't be as big a deal to us for us to lose it- but, you need it!!!!

Drayke's Mom said...

OMG. That is such BS. So basically they want you unemployed and single to be able to keep your TennCare? I too was told my son would have TennCare Select until he was 21. This was due to his being born under 1100 grams. I am so angry for you and angry at the system that has caused this. I would give you a hug if I was there. I will call our congressman as well to try to get this worked out.

Jennifer said...

Mollie, This is gonna sound SOOO bad, and please don't take it that way... but at least your state has given you something all this time! I sincerely mean that in a good way. I hope you don't lose what you've been given. And I hope you can find a way to keep it. God knows, I wish our state offered something for my college educated family who pays it's mortgage when I'd rather spend every dime I had for therapy for my son. And because I live in a poor state, my son has slipped through a system that says he doesn't deserve anything because he isn't disabled enough. Can you believe that? How I wish we would have gotten the time you've had to have bills, therapies, and meds paid for. What a dream. If anyone can make a change for Tennessee, it's you!! Call the attorney generals office. That would be a good place to start I think. And yes, God's in control, but a lot of times we have to get off our butts to make things happen. =)

Anonymous said...

I almost cared.. until you wrote "mom or dad *choose* not to work.
How very presumptuous and condescending of you.
Would you like a side order of socioeconomic disadvantage with your "benefits"? How about incest? Child neglect?
--Don't judge people you don't know.
As for "free ride" are you people honestly saying that very poor people who qualify for help for their profoundly disabled kids aren't working? Is that what you call a "free ride"? Typical degenerate americans.

Anonymous said...

By the way, American degenerates, people don't CHOOSE to be single parents or poor. these are terrible situations to be in. Just in case you were too blindsighted by your extreme privilege to be able to consider those truths. Being in a partnership with disabled kids is an ADVANTAGE, having a job is a PRIVILEGE. wake up to your spoiled selves.