Preface: Our family is one of the lucky ones. We’ve been blessed with so much support in our commitment to keeping Parker alive. But for every lucky one there are THOUSANDS who are not so lucky. What I share below is to also bring awareness to their everyday reality as well as ours.
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Have you noticed?
On television.
In the newspaper.
The coolest side to be on is the side against entitlements.
This 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, citing 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 can 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. And as far has increased corporate charity, well….
There is no evidence 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, 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 understand 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. 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. 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? 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. 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. A child looking at a one time major surgery. 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.
“Would these same people be willing to watch THEIR child die to prove a constitutional point?”
Answer: Hell no. Of course not. Who would? The problem is that these people don’t ever have to deal with the day to day of keeping a fragile child alive, and therefore find it easy to be against entitlements. No doubt a huge about face if they ever found themselves in our position.
I sometimes think about how much Dakin costs the state of Texas. And I am beyond grateful that they are willing to keep my sweet boy here, despite the 100,000.00 or so he racks up a year (as you said, that’s after insurance!). I’m grateful that, to them and at least for now, he’s acutally a person and not just a disease.
As Steph said, amen to everything!!!
Tammy, this is so well said! I used to be one of “those” people who thought entitelments were only about the lazy and indigent. Now, I know better.
I can truly attest to the fact that, were it not for medicaid my son wouldn’t be alive today, wouldn’t be an active, rascally 6 year old about to enter school (sure, with an IEP and tons of support, but…ALIVE!! HEALTHY!) His first year of life was spent mostly in the NICU, enduring surgeries of nearly every kind, meds, oxygen…you know the routine. Without the support of medicaid to supplement our insurance, our son would’ve become another very sad statistic.
Wishing the nay-sayers and politicians would walk a mile in our shoes before throwing out the baby with the bath water.
Amen, Amen, Amen!!!! Right now, if we don’t sell our house before the end of the month we are losing it. We are going to HAVE to file bankruptcy here in a few months as well. People have NO CLUE what it takes to raise a child with multiple medical issues.
These lawmakers go on about “we never target children, special needs, etc” Right now, our state is without a budget. The Gov. is announcing what budget cuts are being made today. So far this year, our health department has closed, most of our doctors are in the millions of dollars waiting for reimburcements from the state, schools are not being given their money forcing layoffs – which translates to therapists, nurses, aids being the first to go. We have a good friend who is a speech therapist for Early Intervention. She hasn’t had a paycheck since last July! But STILL has to fee her family AND pay taxes on that money because on paper, it has been issued.
The thing that REALLY cracks me up is that many of these people who are espousing all of this Consitutionality crap are the same ones who oppsoe things like teaching Evolution in schools. Ummm, aren’t they putting it into practice? Without help, isn’t it just survival of the fittest?
Steph
Steph,
I read your comment earlier this morning but had to walk away and come back before I could reply because I know your pain. We were sooo close.
I have to admit that our family has been fortunate. So many people have fallen in love with Parker and have been willing to support him. But I know this isn’t the case for everyone.
I was worried because our fridge is about to go out. But your comment today reminded me of how much so many more families are losing as they try to keep their kid alive.
Our family will keep you guys in our prayers that you get that house SOLD!
MUCH love!
Twitter: therextras
says:
I don’t live in Utah. “The coolest side to be on is the side against entitlements.” Glad that I don’t live in Utah. I don’t hear this message where I live. Medicaid does save lives and some abuse the system. But I don’t hear cries to eliminate the system coupled with patriotism. I am so sorry you are. Such a wrong and politically motivated message in that coupling.
I know you cannot ignore these messages, Tammy. But, seriously, can you continue to fight the world and keep Parker alive, too? Look at what the stress has done to your health – previous post. Is there someone whom you can confidently rely-on to take-on the political battle?
You might think that a post like this is cathartic (talk with your therapist about this), but the work-up also fills your body with destructive cortisol. I’m going out on a limb here, but want you to know I care about you and Parker.
If we don’t fight the world, who would be there for our kids when we’re gone? It’s worth fighting, even if we lose. Even if we change one person’s mind. That makes the world that much a better place for our kids.
That said, federal dollars do not require coverage of illegals. It’s a flat out lie to distract people with. The only place that’s required to do anything for illegals is a hospital emergency room. And that’s because they’re required to treat anyone who needs it, regardless of ability to pay, or insurance.
Twitter: nehimomma
says:
Yup you have summed up my thoughts exactly…what I find ironic. Is that the very same people who spout that there should be an end to medicaid…spout that our leaders or our country is going the way of Nazi Germany.
Funny thing is…
What Hitler did…was convince people that the “unworthy” the disabled, poor, other ethnicites, mentally ill ect…were “feeders” and that the government didn’t have the money to feed those disabled people (since they were “unproductive members of society”)…so they should be euthanized instead.
Is it really any different for the government or the people to actively kill someone because they are disabled or are a “feeder” vs refuse to pay for there medical care…and since they are disabled and depend on that medical care to live…they die.
IMO there is no different. Either your gonna pay for them…or they die…period.
I’m not one to quote scriptures much…but this one sums it up for me “Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”
Funny how people never include public schools or public libraries or public transportation when they talk about entitlement. Why? Because they’re probably taking advantage of those particular entitlements.
Tammy – you mentioned when your private insurance caps out… Have you checked out the new regulations from Healthcare Reform? The lifetime limits is prohibited in all health plans and insurance policies issued or renewed after September 23, 2010. It’s part of the Bill Of Rights regulations. There will also be restrictions on annual limits on coverage, but that will be phased in over the next 3 years. Check with your private insurance to see what changes may be coming. I hope some of it helps. I certainly wish there were even more changes. Hugs.
Twitter: mamikaze
says:
there hasn’t been any definition on what “no lifetime cap” means. just because the lifetime total benefits cap could be removed, many of us have caps on specific types of coverage. My daughter will run out of medical equipment coverage by then end of this year. No lawmaker will tell me if this type of cap will be eliminated.
Our WA State attorney general signed us up on the lawsuit against reform. Our medicaid system is so effed up now and he ants to take away federal funding. Steam comes out of my ears thinking about it.
Bonnie,
That is a really a good question. I have no idea about how the new health care reform, our insurance, and lifetime limits.
I do know that Utah is one of the leading states in rejecting all healthcare reform.
I guess I need to make some calls. It would be wonderful if at least the cap thing could be repealed here in Utah.