Every day, she needs Qvar, Miralax, and specially compounded Prevacid.
Most days, she also needs Albuterol and Benadryl.
Some days, she needs Zofran for vomiting, Triamcinalone for granulation tissue, Vusion for her g-button site, too.
We never leave the house without her EpiPens, Benadryl, Zofran, Albuterol and spacer mask, in case of allergic reaction, asthma attack, or neurological episode.
She has a feeding tube and receives 3-4 daily feeds on average. This requires shipments of Pediasure and tube attachments on a regular basis.
She sees 9 physicians for a variety of issues that are without overall diagnosis; our pediatrician for regular medical issues, a neurologist for her episodes and underlying neurological problems, a geneticist, an ENT for her profound unilateral hearing loss, a GI/feeding disorders specialist for her constipation and feeding problems, an ophthalmologist for her minor sight impairment, a pediatric surgeon for her g-button placement and subsequent checks, an orthopedist for her joint ad muscle problems, and an allergist for her curious food allergy.
She needs weekly therapies, occupational to help her overcome her food aversions and physical to help her strengthen her muscles and improve her balance.
She is also uninsurable according to the for-profit insurance sector.
She has been uninsured twice in the past year, through no fault of ours, and while we are incredibly thankful for the CHIP plan she is currently covered by, to get her enrolled my husband has had to take a pay cut and we've had to pay for unnecessary childcare to lower our income sufficiently for qualification. There are currently no other options for her and without insurance, we could not provide for her basic medical needs.
This year I've worked with some wonderful people and organizations attempting to rectify this situation in our state by creating a CHIP buy-in program for children who have no other insurance options, but are above the 200% FPL cut-off guideline. I've shared our story several times, at the Texas Capitol, at the United States Capitol, in a magazine, in newspapers across our state, on television, and at a few other speaking engagements. I've done what small part I could to raise awareness on this issue, because before it happened to our family, we simply did not know it happened. We did not know that there were good, hardworking men and women who wanted and needed insurance for themselves or for their kids and it simply was not available to them. The bill that was created to cover these kids was a solid, bipartisan supported bill and we felt that it had a great chance of being passed. Unfortunately for the children in our state, the legislative body allowed another issue, namely Voter ID, to crowd out this CHIP bill and last night the House of Representatives closed session without ever voting on it.
We, as a family, were counting on this. 80,000 other Texas families were counting on this. The uninsured children in our state were counting on this. And in the end, despite rallying over 1,000 calls to the Speaker's office, the issue was treated as if it were unimportant, left to die without even a vote. In spite of the Voter ID clogging, this bill could have survived if action was taken. Our state Senate passed it out THREE times, but the House dropped the ball repeatedly. Though, even if the House had voted it through, our governor had already expressed his disapproval and likely would have vetoed it. This is why Texas is the national leader in number of uninsured children, because they simply are not a priority when it comes time for action, and I find that inexcusable.
Instead of breathing that long awaited sigh of relief, last night my husband and I discussed what to do next. In a few months, he's due to receive another raise and the following month we will have an income check. He's going to have to request that he not receive a raise this year, to prevent our children from being dropped from the program. And next year? And the next? We will continue to do this for as long as necessary to provide KayTar access to the medical care she needs, but it should not be this way. Every child deserves access to affordable comprehensive medical care, regardless of their health status or income. Healthy or sick. Rich or poor. Yours or mine. Every child.
Cross posted at Hopeful Parents.
Reading this made me so very, very upset. Why is it NOT TOTALLY OBVIOUS to everyone that having a medical and insurance system structured around profit is a bad idea, that it will inevitably lead to vulnerable people being denied insurance?
Sigh. I'm so sorry.
you said it. and so well. hope things change SOON.
I hate this about our country. HATE it. :( Hope the bill gets revived and PASSED!
I don't understand why she is not insurable...is it because of her many different needs? And why does that make Bubtar uninsurable? I feel guilty that I don't know these things - and have to admit I am quite naive b/c I have never dealt with it. I have read your blog for a while now - but have never understood the whole uninsurable thing? I will continue praying that things change.
Tami: KayTar is uninsurable because of her level of medical need. She is too much of a financial risk for insurance companies to accept.
As far as BubTar, because of the steps we have to take to keep KayTar insured, paycuts and income lowering, we can't afford to pay for a separate plan for him and so he is also covered by CHIP...as long as we keep ourselves eligible.
KayTar was insured previously, before all of the medical stuff came to light, but that plan closed and when it did, no one else would cover her. We have ALWAYS intended to pay for our kids coverage...we just no longer have an option to do so. This CHIP bill would have allowed us to buy-in to the system and pay for the kids' coverage, but unfortunately, it did not pass.
You are right, there is no excuse. It makes me ill to read this Kyla.
That really stinks. We have private insurance and it is GOOD. But once my job goes away (Probably next year) I don't know what our options will be.
TC has asthma, allergies, autism, eczema...lots of medical needs.
I can only hope that change is coming for your family and so many others...
So upsetting. I am so sorry this wasn't even considered this session. I hope it changes soon. :(
This is terrible. I feel so bad. and so lucky I'm in an income bracket where I qualify for SSI. Because my son get's SSI, he automatically has Medicaid to pay for copays (he is insured - he's a very healthy boy with only minor health issues and severe autism)
Have you ever tried to apply for SSI? With your daughter's disabilities, she may qualify and the income limits are higher than most services, plus SSI automatically qualifies you for a lot of services you wouldn't normally qualify for. SSI would put her on medicaid for as long as she had SSI.
You did more than a "small part", you went all out and advocated as much as anyone probably could on this issue. I'm so mad that it went down the way it did! Our country has lots of work to do and many priorities to rearrange. It's shameful, really.
I still can't believe that everyone doesn't understand that health care should be a right, not a privilege. Especially in the richest country in the world.
I hope things change for Texas' children soon.
You're so right Kyla. All of this is just inexcusable...the fact that the bill didn't get voted on, the fact that the governor likely would have vetoed it and the fact that it ever got to this point in the first place. I am so sorry for your family and for the tens of thousands of other families. You have worked so hard and even though part of you might feel like it was all for nothing, I hope you know it wasn't. You've inspired so many people and I know you'll continue to fight for your daughter and for what is right. ((HUGS))
This makes me want to scream, and makes me want to cry. I hope this turns around - because it's so WRONG.
Yes, with a caveat.
yes, yes, yes
you speak so eloquently about this, Kyla. Thank you for being such a strong voice for this.
This is just so wrong. So wrong.
If I may, the only (dare I say) good thing to come of this is the incredible job you are doing to educate the rest of us. You really are. Even though I rarely comment, I absolutely associate your name with awareness regarding the health care system. Everywhere I see your name, I think about it.
I know it's not much, but I hope it's something. Keep speaking.
It's criminal to deny people the right to healthcare. Criminal.
Keep advoacting, Kyla. Your voice rings out strong and persuasive.
i am so sorry, Kyla.
does the fact that the bill died on the table because the House closed mean that it will still be on the table when government goes back to session? (forgive me, i'm Canadian, i'm vague on the ins and outs of all of this)
in my mind, as Beck said, it's just obvious that the priorities of a profit system will inevitably lead to this. and it makes me terribly, terribly sad.
It all makes me spitting angry on your behalf and on the behalf of all the other kids who were shut out by the House's negligence.
What's even worse is when you add a custody nightmare to the insurance issue. Here in PA, my partner lost his job, he has 50% custody of his kids, but still had to pay child support because he made more than his ex-wife. He loses his job, is court ordered to provide insurance, but can't afford COBRA that would be more than 50% of his take home pay (especially since he actually lives in another state and keeps a home in the kids resident state JUST so he CAN have custody, so we are paying for two homes PLUS child support), he files for a modification of child support since his ex-wife will now owe him support. Well, he calls CHIP to get them enrolled, and guess what? Because he has a child support order in his name, he can't even apply!
It doesn't matter that he shouldn't be paying child support at all, or that he pays it ON TIME, just because the order is there, and we can't get a hearing for 4 months to have it changed, he can't apply at all. Way to help the children huh? Meanwhile I'm going without healthcare again because I work for myself and we simply can't afford to cover me now that he is bringing in $500 a month after child support and COBRA. I had no idea these things happened, and I even went through a divorce. Keep getting the word out, and our thoughts and prayers are with you.
I found your blog through a feed from "Okay, Fine, Dammit" and I have to say, as a fellow Texan, I am appalled at this story. We have a girl at work going through the same issue right now. She can't afford the over-priced, crappy insurance our employer offers, but she makes too much for CHIPs. Our boss offered her a pay cut, but she can't afford that either.
Shame on our people in Austin for allowing this to fall through the cracks and shame on Rick Perry. As a state, we should be outraged.
You totally need to send your story to Texas Monthly.
I want to throw up. Completely throw up. I'm so sorry, Kyla. How is it possible that the officials we ELECT don't hear the cries of the people? Is our gov't system that confused? Is our system that power hungry that the needs of the people are not the priority?
Oh, Kyla. I am so upset and sorry and sad for you and yet so proud of you at the same time.
You are right. They do. And I am sorry the people that need to see it, don't.
You are amazing. Eloquent, passionate. This will happen and it will be because of you.
oh, Kyla, I'm sorry. I was praying the bill would pass. Here in CT our Husky Plan (S Chip) does have a buy in option. It helps so many people (and us more than once as our income fluxed up and down!) Pulling for TX to make the changes so many families need!
Shocking. Shocking, shocking, shocking.
Your voice is powerful and eloquent, and needs to be heard.
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