Preface: Our family is one of the lucky ones.Â We’ve been blessed with so much support in our commitment to keeping Parker alive.Â But for every lucky one there are THOUSANDS who are not so lucky.Â What I share below is to also bring awareness to their everyday reality as well as ours.
Have you noticed?
In the newspaper.
The coolest side to be on is the side against entitlements.
ThisÂ is the new, politically correct way of saying you are against services such as Medicare and Medicaid.
Because nobody wants to stand up and say that they are actually against services that keep people alive.
There are those who sit on their so far right they by passed reality years ago high horses, citingÂ the Constitution in their defense of taking away the supports that keep our country’s most vulnerable citizens breathing.
Oh, this modern day army of self righteous patriots point to the theory that if corporations were taxed less, they then would be more likely to give to charity, thus effectively replacing the needs for services such as Medicaid in the first place.
As someone who has spent the last 5 years on this side of the situation, I canÂ tell you that this is simply unrealistic.
For Parker alone, it takes over $75,000 dollars a year to keep him going.
That’s AFTER our private insurance has paid out.
And does not include hospital visits, hospital stays or surgeries.
I’m not sure how to fund raise for that much on a yearly basis.Â And as far has increased corporate charity, well….
There is no evidenceÂ that the dream of increased corporate charity or a new citizen based view of philanthropy will ever materialize to a level that could support the families of children with special needs, medically fragile children and the elderly.
It just makes for really good sound bites from ultra conservatives; giving them a carpet under which to sweep the real life effects of their vote to end any and all entitlements.
(If the truth be known, betting Parker’s life on such a big MAYBE scares the hell out of me.)
I understand that federal Medicaid monies come with federal rules,Â such as requirements to cover those in our country illegally.
(But then again, how could I turn away ANY kid that needed help to stay alive?)
I understandÂ the theory that by rejecting federal funding a state could then set it’s own Medicaid guidelines using state taxes.
To be fair, there are many who would support a state funded and operated Medicaid system.Â It’s the federally funded program they take issue with.
I could actually stand behind this theory.
I also believe in attacking any and all waste and abuse found within Medicaid.
But what if a state chooses NOT to fund ANY entitlement programs?
Would these same people be willing to watch THEIR child die to prove a constitutional point?
Let’s face it.Â Some of these patriots have a few rather unsettling ideas.
Like if our family was just more self sufficient we could do without the evil entitlement known as Medicaid.
Because they went an entire year feeding their family for $10.00 a week.
But, have they ever paid out of pocket for a script of Tobi, or Revatio, or Tracleer each month?Â Or how about all THREE while still trying to feed their families and keep a roof over their heads?
We still have our donation button up because even with private insurance and Medicaid there are many months in which our out of pocket expenses for Parker are financially overwhelming.Â Our recent experience trying to obtain Parker a script of Tobi is just one example.
What would families of medically fragile children do if Medicaid were totally ripped out from underneath them?
There may be families for whom a community could rally around.Â A child looking at a one time major surgery.Â Or a child who only requires a few medications a month.
But for a kid like Parker, and the thousands of others like him, especially when our private insurance caps out, I’m not sure a community with even the biggest hearts could keep them alive.
And ask a parent of a kid who has a rare or orphan disease how hard it is to find a corporation who’s guidelines for charitable giving cover THEIR kid.
In my opinion, these self proclaimed defenders of THEIR take on the Constitution stand to do more damage and make more headway in bringing down our great Republic than all other threats combined.
Because what kind of a society are we if we vote to remove any and all supports for it’s weakest citizens?
Chauvinism is alive and well……and taking aim at those who with the least ability to fight back: the elderly and those with special needs.