Watching Your Health Care Float Away

It’s going to be a squeaker, this Supreme Court heath care decision.

It doesn’t matter if you support health care reform or vehemently curse it’s existence. There are going to be consequences if it’s repealed.  Consequences that will be felt especially among some of the weakest in our midst:  medically fragile kids with special needs.

Once health care reform ends  our private insurance will kick Parker’s teeny tiny designer hiney off our plan without even dreaming of giving a damn.


That’s because Parker has almost reached his million dollar limit.  He’s only still on our plan because of health care reform.

What’s the big deal, Parker is on the Travis C. Waiver.  We’ll be fine, right?


Yeah.  Tell that to the state of Illinois as parents fight to keep their kids breathing and the Medically Fragile Technology Dependent waiver alive

There are people in Utah that even if the control of Medicaid was pushed down to a state level, would then push even harder for it to be rescinded all together.  I should know.  I talked to a few who are running for local office at our last caucus meeting.

Without a certain little clause in the health care reform bill, Parker will never, ever be able to be covered by private insurance again.

Knowing your kid’s life depends on a waiver that could be ended at any moment by those who lean so right they fall off the charts isn’t well…..comforting.


Newsflash boys and girls, the Travis C. Waiver doesn’t pay for everything the way some would like to claim.  When Parker was first prescribed Tracleer, our cardiologist told us not to even bother trying to jump through the hoops to get this medication if we only had Medicaid,  because Medicaid didn’t cover it.  It does now, a few years later.  But at first it was our private insurance that covered this medication.

Where would we have been during the gap that Medicaid didn’t cover Tracleer?  Up the proverbial health care creek, without the medication to prevent Parker’s veins from hardening before we could find out how to address his PH.

We could not have paid for this medication out of pocket.  We couldn’t even afford the co-pays for Parker’s meds out of pocket.  Hence the credit cards we have,  lousy with medical debt.

There are other medications for Pulmonary Hypertension that we’ve been saving in case we need to more aggressively treat Parker’s disease down the road.  You can bet I’ll be checking to see if Medicaid covers these meds yet.

Don’t think that thousands of other families, just like ours, don’t share these exact same fears.  Read Violet’s story.     And the stories of the families trying to save their waiver in Illinois.

I’ve been  hesitant to advocate for Parker lately.  One reason is because I live in a state where so many look at Parker’s waiver as theft.  Others  call you a fraud if you try to fund raise to keep your kid alive.

I made the mistake of allowing an exceptionally bitter soul  make me feel as though somehow I needed to defend my actions, even when I knew I had done nothing wrong.


Here’s the deal.  Parker was put in my stewardship by a Father in Heaven who trusted me to take the best care I possibly can of him.  It’s my job to keep Parker alive and provide for his needs.  Seriously.  It’s my full time job.  I have the gray hairs, elevated blood pressure, and nightmares to prove it.

I’m going to advocate for Parker.  And if that means lacing on my Army boots…..well, there may be some people who want to get the hell out of my way.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.


  1. While not on the same degree as Parker, if they revoked this reform I’m beyond screwed for lack of better terminology. I am still able to be on my mom’s insurance while in college, but otherwise I would have been kicked off at 23. Also, without this reform I would NEVER qualify for ANY kind of insurance when I do attempt to get my own insurance when I’ve graduated. I can’t get the treatment from the specialists that I have under Medicaid. I am sick thinking about what will happen if they decide to mess with this. While medical care has a LONG way to go in this government, it was a step in the right direction. I’m praying for your family and that those in Washington do what’s right!

    • Tammy and Parker says:


      This is truly the thing that nightmares are made of. I’ve been told everything from ‘we all have to die sometime’, to ‘you’re robbing me’……and my favorite….you’re a fraud, you don’t really have any medical debt, and your husband makes to much for Parker to be getting the waiver anyway. My husband is an elementary administrator. Yeah. We’re rolling in the bucks. Not to mention that a WAIVER is based on what Parker makes and not what Reed does.

      I’ve hitched Parker’s future to the wagons of a few good people in this state who believe in social safety nets for the weakest amongst us. Safety NETS not elite plans. Just the basics that would still allow Parker’s body and soul to remain as one. But whether they get elected or not is a totally different story. On this issue my husband is so nervous that I’m not even sure he’d be willing to vote Republican.

      Thanks for sharing your story!

  2. There is so much about what is going on w/health care right now that I so do not understand at a 40,000 foot level let alone an individual level… but I know this, I appreciate seeing the stories of the people behind the decisions (like Parker’s story) and living in DC I realize how FEW of the people making the decisions on Capitol Hill have heard these stories…

    If they had, how could they vote to repeal a waiver or leave so many people without insurance?

    Thanks for sharing your story – I know it takes courage – keep sharing because you have an important voice.
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  3. My Ashley’s million dollar limit has already been reached. She is totatlly dependent on the Medicaid waiver and you’re absolutely right, you don’t know from year to year whether the waivers will exist. It is truly the stuff of nightmares…
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  4. In PA, they have been trying to change the eligibility rules to stop giving Medical Assistance to kids with disabilities, but have been unsuccessful so far.

    So what they have done now is pass a bill that allows the dept of public welfare to change the policies and procedures without any state or federal approval, and they are going to start charging us copays for everything in September. Although they haven’t figured out how much they will be or what they will be on. Not sure what that means about having a behavioral support person with Michael 40 hours per week so he can go to a regular classroom at school, let alone anything else that he needs.

    It’s not life or death in our particular situation, but I know there are kids who will be harmed by this who are in much more precarious situations.
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  5. Carole says:

    I am completely shocked at how so many people want to do away completely with the health control reform that was passed. How do we turn our back on so many in this country? How is having a public option that is affordable and available to those that need it a bad thing? Our daughter was born early and although we haven’t had to endure even a small percentage of the medical bills your family has we were still so thankful to have the help when we needed it with her bills from the NICU. I’m hoping those that are making the decisions will think about all of us who don’t get federal medical packages and what our families need to literally survive.

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