Medicaid, the AHCA, and the Small Fam

There’s a saying that everyone becomes a Republican when they get older. I have to say, the opposite is true for me. The exact opposite. I find myself struggling to control my frustration with the GOP lately, largely because of what I view as their reckless attempts to overhaul the healthcare system.

The Senate version of the American Health Care Act came out today, and it’s no improvement over the House version (which many of us thought was pretty darn awful already). In fact, the Senate version is worse than expected—at least for people with disabilities.

I don’t know that I’ve fully explained on here why I’m so opposed to this legislation, although I know I’ve stated that I am. So if you’re curious why, I’ll explain. And if you’re not curious…well, then, just click the Close button on your browser window and go about your day. No harm, no foul.

I’m not going to detail everything that frightens me about the AHCA. Not only would that take forever, you can go online and read any of dozens of news articles detailing what exactly the AHCA proposes. I worry about things like waiving essential health benefits, but many of the news sites can tell you a whole lot more about that. Just be sure to read a variety of trustworthy news sources! If you’re wondering which those are, according to a Pew Research study people on both sides of the liberal/conservative coin seem to agree that BBC is pretty accurate, as is the Wall Street Journal. NPR and the Economist are generally well regarded, too, as is the Associated Press. Breitbart, on the other hand…not so much. Occupy Democrats…also not so much. The Daily Kos…not so much. BuzzFeed…definitely not.

I think we can all agree that on the liberal and conservative sides, there are some very, very poor news sources. It may be the one thing I agree with President Trump on: that there is indeed “fake news” out there. I just don’t necessarily agree with him on which sources are fake and which aren’t!

It might surprise you to know that I, an avowed liberal (becoming more so by the day, thanks to some of the GOP’s latest moves), read conservative news. I do! I do because when I studied rhetoric, I learned that in the art of discourse and argumentation, you must understand your opponent’s reasoning. And I do because I don’t want to get sucked into a liberal vacuum where I’m not thinking for myself and making my own decisions. I am a liberal, I admit it. But I’m a liberal because I think about issues, examine them from all sides, and come to a decision—and nearly always, that decision falls on the liberal side of the spectrum. (Usually somewhat close to center, but edging over to the left. Edging further over these days, it seems.

So my usual tactic is to read the least biased news sources I can find, and then read some of the relatively trustworthy conservative news sources on the topic. I usually don’t read the far-left sources because I already know what the far left thinks. I don’t need to rehash what I already know—that’s just entering an echo chamber.

In all of this research, I keep coming back to the fact that the AHCA has pieces of it that will be disastrous for people with disabilities. And I’m growing increasingly frustrated when I see party take precedence over logic. I get frustrated when I see the GOP so determined to dismantle Obamacare that they’re willing to rush through the AHCA without truly considering the effect it will have on people.

Let me tell you about the effect it will have on people with Down syndrome, since that’s the group nearest and dearest to my heart where healthcare is concerned.

The cuts and per capita caps on Medicaid the AHCA proposes means that programs and services funded by Medicaid will be drastically slashed. This includes home- and community-based services (HCBS, as they’re known). What does HCBS do? They’re the reason why people with Down syndrome are no longer in institutions and are able to live in their own homes or in community-based housing. One of my adult friends with Down syndrome, Sean, lives independently in an apartment and holds down two jobs—and it’s largely because of HCBS. HCBS provides the supports he needs to live on his own (someone to check in on him and assist him with certain household tasks), as well as a job coach that helps him successfully work at his two jobs. Sean will tell you outright, “Don’t cut Medicaid—I don’t want to move back in with my parents!”

Medicaid also funds programs that will help another adult with DS that I know, Rachel, go to college, which is her dream. And someday, Rachel wants to live in a little pink house—which she won’t be able to do without the living supports provided by Medicaid.

Maybe you think the public shouldn’t be funding the lives of people like Sean and Rachel. After all, their parents should be responsible for them, right? If you feel that way, we’ll have to agree to disagree. I do agree that parents should help their children as much as possible when it’s needed. But as a solidly middle-class person who is likely to never break the middle-class barrier, I am well aware that Chris and I won’t be able to provide private services to assist Sam for his entire life. And my son shouldn’t be forced to live in an institution simply because his parents have chosen low-paying careers. Chris and I work hard and do the best we can for our children, but when your child has extraordinary needs, sometimes you need some help. I am happy to help others—happy for my taxes to go to help people who truly need it. And I hope that, in turn, the public will come together to help people like Sam achieve an independent, productive life. Chris and I will do as much as we can…but as much as we can do is still going to require a bit of help.

You might be thinking, “Sam’s only five! Why are you worried about his adult life? That’s years away! Surely something will be put in place to replace the Medicaid supports by then.”

That’s easy to say, but can we really trust that? It’s like that old saying “I’ll gladly pay you on Tuesday for a hamburger today.” Will we really get paid on Tuesday? Maybe…but maybe not. And when it comes to my son’s future, maybe just isn’t good enough for me. Medicaid may not be perfect, but it’s there, and it works. 

And there’s a second factor at play here. Sam may not need adult services yet, but we are currently in need of Medicaid-provided services for his kindergarten year of school. Summed up somewhat succinctly: I have to work; we cannot survive on one income. But I don’t make enough to pay for daycare, and kindergarten is only a half day. (That whole business of choosing a low-paying career again rearing its ugly head…) And so, for the first time in five years, we are attempting to use Medicaid services to help us bridge this one difficult year. But the program is one that will likely be cut if the AHCA goes through with Medicaid cuts as planned…and in that case, we’re a bit up a creek without a paddle.

Not entirely, though. Our situation is the least dire of many that I know who will be affected by Medicaid cuts. We have retirement accounts, and we can dig into them to make it through this next year. (We could also cancel our vacation next year, but given that our entire family has looked forward to it for six years, I’d rather dig into our retirement.) If we are turned down for Medicaid (well, it’s MediCal here in California…), we will survive. No one in our family will go without medical care. We will still have our house. We will still have food on the table. We’ll simply have less in our retirement savings, and we’ll work until we’re 75 instead of 70. (Those are arbitrary numbers. I have no idea how long we’ll work. Just throwing it out there to make a point.)

So when I lobby against the AHCA and Medicaid cuts and caps, it’s more about the future. The immediate future is going to be okay for us either way. It’ll be easier if we can make use of MediCal-provided HCBS for the next year, but it’ll still be livable even if we can’t. It’s more the distant future that troubles me: the loss of things like living supports and job coaches, which could help Sam live independently and productively. And I’m troubled for the people I know whose lives will be far, far more affected than ours by the loss of Medicaid-funded supports. Do you know that 1 in 2 disabled persons in California relies on MediCal-funded supports? And that 51 percent of the Regional Center budget comes from a Medicaid entitlement?

You’ve heard me talk about the Regional Center, yes? It’s the entity that helps Sam and Theo get any services they need. (Which, granted, aren’t all that many yet…but for Sam will someday be many more.) If the AHCA passes with the Medicaid cuts, entitlements like California’s Lanterman Act will likely be slashed—and once they’re gone, they don’t come back. And there goes more than half of the Regional Center’s budget.

So call me a snowflake, call me a liberal, call me whatever you want. But please, at least understand why I’m so frustrated by the AHCA and the damage it stands to do to Medicaid. And hey, if you agree with me, contact your senators and tell them. We only need a few Republican senators to flip to turn this thing around.

I’ve said it before and will say it again: Obamacare isn’t perfect. But the AHCA as currently written is not the answer. It’s downright reckless, to my way of thinking.


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