Wednesday, March 15, 2017

Dear Republicans....

I don't want to be judged. This means I spend a lot of time preventing myself from judging, as I grew up with the whole "judge not lest ye be..." mentality. Well, eventually.

But I have to ask, and I'm going to do this in letter form, and it's CRAZY judgy...

Dear Congressional Republicans,
Why do you want to eviscerate and undermine Medicaid? Perhaps you are lucky. Perhaps you've never truly known a person or a family with deep, long-term special needs or disabilities. If that's the case, I am happy for you. I do know what that is like. My husband and I are both solidly middle-class in upbringing. We both attended strong universities, received our Bachelor's degrees in the originally-intended 4 years, and we got to work. Became contributing members of our great society. I made less money than him (still do...but this isn't about gender pay parity). We are LUCKY. We worked hard. We had money when we were growing up, and truly wanted for nothing necessary. Sure, I wore hand-me-downs. But my parents also paid for a private-school primary and secondary education for me, so I'd be a leg up when I attended college. I went to a top 20-ranked University, thanks to that primary and secondary education, and I graduated with a 3.4 GPA at that competitive level. None of which was paid for by student loans, Pell grants, or other funds sourced from outside my family.

We bought a house. We started a family. Then the record screeching happened. Our son was born with an ideopathic seizure disorder that rendered him incapable of caring for himself ever in any way. We signed him up for insurance under both our companies. That meant our healthcare costs were doubled to begin with. And to add insult to injury, we discovered that we, as the parents and legal guardians of our son, did not have the right to pick which insurance would be "primary"...a decision we wanted to make because one plan was clearly superior to the other. Sadly, the insurance companies picked for us, or rather, against us. But we persevered, because it wasn't our son's fault that health care was so messed up.

Then, when he was about 5, we came off the EDCD Waiver list, and he had waiver funds through the state and was signed up for Medicaid. Now he had three insurance providers. Even more complicated, but we applied our combined brain power to navigating it. Moreover, it took more than 6 months to get off that list, and months of paperwork that we had to be mentored and guided through because it's complexity was staggering. We both speak English as a first language. We shouldn't need documents in English to be interpreted for us.

Medicaid made sure our son had diapers. They don't make diapers commercially for children larger than 30 pounds -- then you move to pull-up diapers, which he could not use. The next size up commercially available was for adults. Our son, who never made it to adulthood, would have been up shit's creek (kind of literally) had Medicaid not supplied this basic necessity.

When our son needed a specialized wheelchair for transport to and from school, the cost that was quoted to us exceeded $6000.00. And of course, we could have dipped into savings to buy it, but the three insurance carriers sorted it out and covered it together. We are lucky that a $6000.00 cost wasn't going to break us. But we know this community, and not everyone came from affluence, or lives in affluence now.

These are just a few areas where Medicaid supported my son, and as a result, the rest of our family. We are eternally indebted for this support.

If you think for a SECOND that there were "'death panels" in the Affordable Care Act (and I know some of you do) then you can be damn sure that thousands of Americans will die because their Medicaid will evaporate with your new plan to push that back to the states which cannot afford to make up the lost funding, and they won't have BASIC CARE.

So, how do you feel about that? Do you feel that consigning a disabled person to death because you don't feel that it's fair to be covering them at "your expense" is reasonable? I expect if the answer is yes, that you have never truly known someone disabled, or who is a family member in direct care of a disabled person. That makes you lucky. But it doesn't make you knowledgeable about how difficult every day is for those individuals (many of whom were born into their disability) or their families and caregivers. And it doesn't make you right. The community of the disabled and their families see you...the providers of healthcare in American see you...the world sees you. They see you grubbing after money and abandoning those who cannot provide for abandonment of our society.  So then I need to know...

How dare you?

A former Special Needs parent, and a human first