I Don’t Understand…

The American Health Care Act (AHCA) apparently passed in the House today. I don’t understand.

There are a lot of things I don’t understand, but this one maybe most of all.

I don’t understand how—regardless of what party you belong to—you can hear how tremendously negatively the AHCA will affect huge populations of people, and yet still vote for it.

I understand that many who support AHCA hate the Affordable Care Act (ACA; also known as Obamacare). I understand that some people weren’t served particularly well under ACA—I understand that premiums for some went up. And that stinks, I admit. That tells me ACA needs some work. I don’t think anyone, in either party, will disagree that ACA has areas that could be improved.

But what I don’t understand is why the answer is to blow up ACA and put in its place something that will be so harmful to so many people. I don’t understand how we in the disability community can reach out to the GOP and say, “Please look at my child—or my sibling, or my parent—and understand exactly how this could devastate his or her life,” and those Republicans can say, “Thank you for your feedback” and go about their life, turning their back on their vulnerable constituents.

Health care is so incredibly complicated that I couldn’t begin to parse through all the finer details of what AHCA as it is currently written would mean and make total sense of it, but I can think about the people I know who could be devastated by this.

Let’s see: How about my adult friend with Down syndrome, who lives independently in his own apartment thanks to the supports he receives under Medicaid? In Washington DC last month, he spoke to members of Congress and said, “I don’t want to move back in with my parents, so please do not pass a bill that would cut Medicaid!” This is about more than him moving back in with his parents—do those who support the AHCA understand how remarkable it is for a person with Down syndrome to be able to live independently, holding down two jobs and living in his own apartment, as my friend does? Let’s not forget that up until about the 1980s, many people like my friend lived in institutions—and the outcome was not good. As parents, we raise our children to be as independent as possible, and my friend’s parents did that—him living on his own is a testament to his ability and to his parents’ work raising him to be independent. It’s quite an achievement for him—and that will likely disappear if Medicaid is cut, because his supports, which he needs to be able to live on his own, are funded through Medicaid.

I’d like to think that someday our Sam will live independently, happily, as our friend is. But if the GOP has their way with Medicaid cuts, that isn’t likely to happen.

Oh, and our friend? He is an only child. Sure, he can move back in with his parents now, but what about when they pass away? Without Medicaid-provided supports, is his only choice going to be an institution? What a damn shame.

I don’t understand how the GOP can turn a blind eye to that, because my friend is certainly not the only one who would face such a future under the AHCA.

How about all of my many, many friends whose children have had life-threatening illnesses or conditions? Leukemia, heart conditions, major gastrointestinal issues… If AHCA doesn’t protect caps on out-of-pocket expenses for major medical events, their families could be utterly devastated, financially. Maybe you saw Jimmy Kimmel’s emotional monologue about his newborn baby boy, who needed emergency heart surgery and who will need at least two more such surgeries. Maybe you were touched by his story. Can I tell you how many people I know who’ve gone through very similar situations with their own children? Literally dozens…if not hundreds. The difference is, most of my friends are ordinary working folks who wouldn’t have the financial resources to pay if the caps were removed on out-of-pocket costs.

Let’s bring it a little closer to home: my own family. Right now, we’re in an okay spot. Chris has excellent insurance coverage through his job. But if out-of-pocket caps are removed, we could potentially be destroyed financially. Sam has been healthy so far, but the chances of him needing expensive medical care at some point aren’t insignificant.

And, god forbid, what if Chris loses his job for some reason? I don’t anticipate this happening, but one never knows what the future holds, right?

Let me tell you what the future would hold: incredible stress on the insurance front. Because guess what? All four of us have preexisting conditions. Theo and Chris share a genetic issue that would undoubtedly destroy their chances at getting affordable coverage—and Theo’s got a nice dose of autism and ADHD on top of it. Sam has Down syndrome—a giant black stain on his insurance record right there. And me? I’ve got enough to fill up an entire hand of finger-counting. Minor heart condition, history of depression…and now apparently postpartum depression may also count as a preexisting condition, as well as C-sections. Two more checks against me! I was recently diagnosed with PTSD, which is also a preexisting condition. Super—one more to add to the list.

Word on the streets is that although the AHCA claims to protect individuals with preexisting conditions, it is a Swiss cheese of loopholes. Most notably, individuals with preexisting conditions could become part of the high-risk pool and could be forced to pay premiums so high that they would be unaffordable for a family like ours that doesn’t have a lot of disposable income.

And while we haven’t used Medicaid up until now, we are just now in the process of applying for it for Sam—for a number of reasons related to his disability. If we are denied due to Medicaid cuts…well, we’ll survive. We have retirement savings we can dig into if we have to. We have a house we could sell if it really came down to it (though that would certainly be a last resort!). But our life would certainly be easier if we were able to access Medicaid for Sam. If we can’t, we’ll survive—but how many people in circumstances less fortunate than ours won’t?

I understand that the GOP hates the ACA. I really do. But I don’t understand when “winning” became more important than the greater human good. From what I see as a citizen, the GOP is so determined to dismantle the ACA that they’re willing to put through a plan that is not well thought out and that has the potential to devastate millions—just so they can claim victory over the ACA.

I have no particular attachment to the ACA—what I do have an attachment to is the ability for people with disabilities to access health care and the services needed for them to live healthy, productive, happy lives. If the ACA isn’t working, then let’s fix it. But please, for the love of all that is good, don’t destroy it for the sake of “winning.” Not when so many lives are at stake.

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