This is What Medicaid Looks Like
When I started writing on Substack last year, I never imagined that I’d be sharing this many politically-related posts. But as a disabled woman, politics has always been personal for me. And right now, with cuts to Medicaid being threatened, politics feel more personal than ever for me. Because I rely on Medicaid to live, and with the cuts being threatened at the federal level, I’m scared what my future could look like.
I’ve shared quite a bit - here, on my blog, and on my Instagram - that I rely on paid caregivers to do most of the basic things that people take for granted every day. Getting out of bed, using the bathroom, taking a shower, brushing my hair… these are all things that I can’t do by myself. Ever since college, I’ve relied on paid personal care attendants (PCAs) to help me with these super basic, everyday tasks.
But what you might not realize is that those PCAs are paid for by Medicaid. That’s right - I’m enrolled in Medicaid! Not only does Medicaid allow millions of people who couldn’t otherwise afford it have access to healthcare, it also covers people like me. Currently in the US, no private insurance covers long-term support services like PCAs and nursing care for long-term needs like mine. So while I do have insurance through my work (and actually, am also still covered by my parents’ insurance!), it doesn’t matter, because PCAs are just not covered at all. So my options are to enroll in Medicaid or pay out-of-pocket.
Truthfully, neither option is ideal. Medicaid doesn’t come without stipulations and strings attached - I have to keep my income under a certain level, I can’t have much money saved at all - but it is, by far, better than paying out-of-pocket. It’s a bit of a misnomer to even call them both options, because paying out-of-pocket is not an option for me, financially. Based on the number of hours I need, I’d run out of money in a month or two, easy. And then I would be eligible for Medicaid, because without my PCAs, I would lose my ability to do my job and then I wouldn’t have any income at all to worry about! This is a simplistic explainer of the system - the regulations and requirements are incredibly complicated - but the broad outline is the important part to keep in mind right now. Medicaid is what keeps me living every day.
I bring this up now because, like I mentioned at the beginning of this post, Medicaid is currently being threatened with major cuts. Cuts could mean less money in the budget for Medicaid overall, or the cuts could be camouflaged under the guise of “block grants” instead, where each state gets a set amount of money, and when it runs out, it runs out. Whichever form it takes, less money means less paid PCA coverage for me. It’s a terrifying prospect.
Medicare and Social Security are safer from the cut of threats, because they have a large voting bloc of people who will call and lobby and do whatever it takes to keep them safe. Medicaid, unfortunately, doesn’t have a unified group with that voting power behind it. We need people like you to speak up for us. So I hope that after you read this post, every time you see me, you remember that I’m one example of what Medicaid looks like. And my life shouldn’t be the sacrifice for a balanced budget.
This week on the blog
What I’m reading and watching
I had a very good reading week - definitely a little bit of escapism happening, but the heathy kind. I sped through Out on a Limb by Hannah Bonam-Young, a romance between two disabled characters (the female main character shares the author’s disability) who find out they’re having a baby together after a one night stand. That’s normally not my favorite trope, but it really worked for this story and didn’t annoy me. The disability authenticity was so real and so well done - the perfect mix of humor and seriousness. If you’re at all into romance, I definitely recommend this one.
I also read Not Another Love Song by Julie Soto in about two days. It’s also a romance, this time between two professional musicians at the Manhattan Pops. It’s a little bit of adversaries to lovers, and I thought the chemistry was just so good. It was also so clearly a love story to music, and I really love that. This was such a fun read.
I finished my audiobook, which was James by Percival Everett. It’s definitely very different than my other two reads - it’s a serious litfic - but it was incredible. It’s a retelling of Huck Finn from the slave Jim’s point-of-view, and really makes the story his own. It makes you think, it’s funny, it’s heartbreaking - just all-around very, very powerful.
I’m still making my way through the Oscar Best Picture nominess, and this week I watched The Substance. It’s a horror movie, but also commentary on aging and beauty and the stigmas around them in society. I think movies like this always have another layer for me, as someone whose body isn’t considered beautiful by society’s standards! This was so thought-provoking and shot beautifully, too.
What I’m eying and buying
AYR makes some of my favorite t-shirts, and they had a 20% off sitewide sale ending today. I think I’m going to pick up a striped version of this short-sleeved t-shirt, though this long-sleeved version looks so great, too.
My friend Sophia collaborated to create this super cute coversation heart inspired charm that says “I Slay.” I love the little reminder about self-confidence and self-love, especially around Valentine’s Day!
I came across the brand Tilt Beauty on Instagram - they’re a new company that’s making accessible beauty products! Obviously, I had to try them out, so I picked up a mascara, tinted lip balm, and clear lip balm. Once they’re in I’ll let you know what I think!
May I ask, why would you not be on Medicare with Social Security- Disability? With a full time care requirement to get out of bed or use the restroom, it would seem like you should easily qualify for those programs.
I'm so mad when people just broadly say to cut things like Medicaid because the scope of what they cover is so far beyond what people think. It gives you a quality of life that just isn't obtainable without it. Even the very wealthy would become poor if they had to pay out of pocket for what your expenses would be without it for as long as you need it!
Thank you for speaking up!