Friday, October 19, 2012

Reformation

I was asked to write a bit about health care reform and how it will affect Kelly and others like him.

Health care reform is essential for Kelly to live a full, healthy, prosperous life.   Simply put, we are just one complication away from total bankruptcy as a family.  As an adult, he would, most likely, be doomed to Medicaid, public assistance, and poverty should the reforms be repealed.

Take for example, pre-existing conditions.  Down syndrome is a pre-existing condition.  If Mike were to lose his job or become unable to work and we lose our insurance, we would not be able to find another carrier to accept him on our plan.  Blue Cross Blue Shield, our insurance company, has always been very plain in telling people that they will not take someone with Down syndrome back on their plan once they've left.

That was before Obamacare.  Obama's health care reform law no longer allows insurance companies to deny people coverage based on pre-existing conditions.  Obama's health care reform protects Kelly from being rejected for being who he is.

Romney has said that he doesn't agree with discriminating against people because of their pre-existing conditions, but will repeal Obamacare and leave that provision up to the states.  In other words, he will once again make it legal for insurance companies to deny my son coverage.

After I finished typing the above, Mike and I talked about this.  If Mike were to retire before Kelly turned 18, he'd be ineligible for Medicaid in Illinois as it is income based and unable to be on our private plan due to his diagnosis.  I guess, then, Kelly would become one of those uninsured that must use the ER as routine medical care.  I don't even know.

Wow.  That's pretty fucked up.  

Obamacare also eliminated lifetime caps.  Lifetime caps are just what they sound like -- a cap on how much you can cost in medical expenses for your lifetime.  Most of the time caps are set pretty high, above $1 million, closer to $2 million. But when you have a child with Down syndrome who perhaps had heart surgery and then infantile seizures, that adds up pretty quickly.  The medication for the seizures alone is $100,000 per shot.  Yes, you read that right.  That many zeros.

Now, I suck at math, so correct me if I'm wrong, but at $100,000 a shot, one could easily hit the $1 million mark before an 18th birthday.

Even on policies that don't have caps, if a simple accident turns into a major disability, premiums can skyrocket so high that keeping the insurance just isn't possible.  And then, once again, even if you get on your feet, you now have a pre-existing condition preventing you from getting insurance.

This is just an inkling of what's at stake this election with health care reform.  And, in my opinion, Obamacare hardly scratches the surface.   

We're blessed.  Kelly is healthy and requires only a slight bit more than my other children.  But I just talked to the therapists' office today and we are looking at about $300 in co-pays per month, plus 20% of the total bill as so-called co-insurance.  I'm certain that his therapies alone will cost us about $500 a month out of pocket.  Couple that with bimonthly ENT and pulmonologist visits, geneticist visits, CBC blood draws, weight checks, vitamins, supplements, and prescriptions and you get the feeling that the financial weight of a healthy child with a disability can be crushing.

It is cost prohibitive to have a child with a disability.  That's the plain truth of it.  That is why we have a 94% termination rate in this country.  Think about that number.  94%.  That's a whole lot of pro-lifers out there exercising their right to choice because they are terrified of going bankrupt caring for a disabled child.  Where's the much ballyhooed culture of life?

Until we recognize that health care as a fundamental right, we cannot even contemplate a culture of life.   And it pisses me off to hear the right talk about it.

My son is a valuable member of society and he deserves better.  Hell, we all deserve better.



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