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 There are going to be consequences if it’s repealed.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in Utah that even if the control of Medicaid was pushed down to a state level, would then push even harder for it to be rescinded all together.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.


  1. Laura M Ptacek Mar 28, 12
    • Tammy and Parker Mar 28, 12
  2. Jenny Mar 28, 12
  3. Deborah Mar 28, 12
  4. Trish
    Mar 28, 12
  5. Carole Apr 9, 12
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