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.