Who needs Medicaid…….just host a BBQ to keep your kid alive.

Go HERE for a chance to win a Scentsy Jack O’ Lantern Warmer during Parker’s

Scentsy Raffle!

Our local Legislative Representative is convinced that Parker’s Medicaid Waiver could be replaced with the charity of neighbors and friends if we just hosted a BBQ (or a Scentsy raffle!) letting everyone know what it takes to keep our Brave Hero alive.

This Representative accuses me of making fun of the charity of others.

Nothing could be further from the truth.

I’m trying to point out how unrealistic this idea is.

A few things we would need to pay for out of pocket if Parker loses his place on the Medicaid waiver:

  • An LTV vent along with all the monthly tubes, the heater, etc. ($21,000)
  • A compressor for Parker’s trach mask set up.  This also requires a heater.
  • A suction machine.
  • Oxygen bottles, plus the money to have them refilled on a regular basis.
  • Trachs, trach ties, suction catheters, g-tubes, trach masks  BTW, one trach.  ONE trach.  $200.00, thankyouverymuch.
  • several thousand dollars a  month in medications.
  • Payments of hospital visits, etc.

Government isn’t charity, exclaims our local Representative.  Okay.  I get that.  However government without social infrastructure is chaos.  I don’t care how many guns you, as a Patriot, fight for the right to weld.


And what kind of a government watches as it’s weakest die while pointing to THEIR translation of the Constitution as an excuse to do nothing.

Then there was UDOT who paid THIRTEEN MILLION to the company who LOST the bid for a $1.1 Billion construction project.

Aw, poor guys.  Sorry your bid lost.  Here.  Maybe this THIRTEEN MILLION will make you feel better.

You may be thinking, with the new HCR taking place, your private insurance won’t be able to kick kids off your plan.

Think again.

McDonald’s just announced that they may no longer provide heath insurance to it’s workers.

Several insurance plans are no longer covering  kids, healthy or not since parts of this HCR recently went into play.

I asked our local Legislative Representative to put his theories in action by being Parker’s head fund raising leader.

Still waiting to see any results on that one.

Lucky for us, we have sweet friends such as Katie and our Local Nemesis softball team who realize that  our Legislator’s theory, while sounding really patriotic and all that……simply isn’t realistic.

We know we have a year left on Parker’s waiver.

But after that?  Who knows.  Especially with the cuts to the waiver being made.

Our goal?

Providing Parker with at least the durable medical equipment listed above.

That, at least, would be a start.

PS: Those of you who live in Utah need to make your voices heard.  LOUD and CLEAR and OFTEN.  Because you simply don’t know when YOU could be next.


About Tammy and Parker

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

Comments

  1. Jean P says:

    Wow, now lets visit a neighborhood that has two medically fragile (or more). You better hope you live in a neighborhood with deep pockets. That’s my way of saying what a foolish idea.

  2. I’ve enjoyed following your posts. We also have a son with DS. As I’ve read the posts that talk about the expenses related to having a child with so many medical complications, I have to ask if you’ve ever thought about moving. We currently live out of state. Our son’s medical bills are paid 100% through a program called Terfra. Only 27 states have a TEFRA program, and only the state I currently reside in pays everything in full. Therapies, surgeries, doctor visits, hospital stays, diapers, orhto devices, etc. The list goes on. Maybe it would be worth looking into? Best of luck with your fundraiser. Thanks for the many hours you spend advocating for and loving Parker and my little Ben.

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