a (not so) quick note about insurance and the government and being super-disabled

I don’t like to discuss politics online for a bunch of reasons. Examples include: because it is bad, because people who dip their toe into discussing politics all seem to slowly morph into gasbag caricatures of everything they claim to despise, and because I would rather discuss movies about Vin Diesel stealing top secret government devices using only the powers of family and supercharged fluorescent Hondas. The real world is big and scary enough. Online is strictly for goofs. These are the pillars of my personal philosophy.

But I do reserve the right to break this policy as I see fit. Which I do, now, because I would like to explain some things about health care and being super-disabled (medical term). So let’s do that.

Back in March 2005, while I was a 23-year-old junior in college (“23-year-old junior in college” is one of those phrases that kind of explains itself), I broke the C4 vertebrae in my neck and ended up mostly paralyzed from the neck down. (I have limited use of my right arm, very limited use of my left, and… that’s about it.) At the time, I was on my parents’ health insurance. This was good. Not the neck thing. That could have worked out better. I mean the insurance thing. Between surgeries and hospitals and months of physical therapy in fancy rehabilitation units, I rang up somewhere in the neighborhood of $1 million in medical bills. That is, mathematically speaking, a lot of money. But I was alive and did not feel like cashing in my chips and watching daytime TV in some sad facility for the rest of my life, so I pressed on.

CUT TO: 2008

I am now 26, off of my parents’ insurance, and back in school. Law school, to be specific, at Temple University in Philly, because I had already returned to Temple and gotten my undergrad degree, and had no idea what to do with my life, and the economy had yet to crater when I applied, and spending three years in law school seemed like as good a way to burn $100k as anything else. (In hindsight, I should have used the $100k to live in a five-star hotel in Monte Carlo until it ran out. I think about this a lot. So many linen suits.) To replace the lost insurance coverage, which I need, obviously, I rely on Medicare (because I am officially, permanently disabled) and Medicaid (because I am handicapped and making no money as a student, so I satisfy the financial requirements). This is also good, because it was pre-Obamacare and I have what some policy experts would refer to as THE MOST pre-existing condition. Medicare and Medicaid enable me to stay in school and get a degree, as opposed to being dumped in a nursing home in my mid-20s.

Also: Do you know about Medicaid waiver programs? Maybe you don’t. I kind of hope you don’t, actually, because you don’t really know about them unless you need them, and if you need them something has gone very wrong for you. The short version goes like this: In states like Pennsylvania, as long as you stay under the Medicaid income limits and you are, like me, very disabled, you can apply for the state to use Medicaid money to help pay for your home health aides. (Here’s a good/scary article about waivers.) This is good, because I need — again, official policy term coming — a buttload of hours of aide service every week, for things like getting into and out of bed, getting dressed, etc. etc. etc. If I have to pay for this out of pocket, even if I’m hiring and scheduling aides myself and cutting things real close hours-wise, I’m looking at a cost somewhere in the neighborhood of $30k/yr. If I want to go through a staffing agency that actually has, like, backups and trained staff to help with scheduling, you can double that figure. This would be less good, and would also result in me being dumped in a nursing home, because I did/do not have $60k a year in disposable income to throw at that, or anything else for that matter. So it is with zero hyperbole that I say I would not have been able to live at home and return to college and get a law degree without these programs.

CUT TO: 2011

I am done with law school. I have passed the bar exam. I am not working as a lawyer.

Part of this is because being a lawyer became less and less appealing to me as I moved through law school. (I actually enjoyed the school part. The practice of law itself, not so much.) A bigger part is because the programs I mentioned above come with very strict financial requirements. Again, the short version: If I earn above about $2k/month, I become ineligible for the waiver programs and the cost of the health aides is, again, all out of pocket. Lawyer jobs pay pretty well, but $60k is $60k, and it becomes pretty clear pretty fast that I am not landing a gig that would offset that figure.

So, we blog. I turn a freelance, pseudonymous per-post gig at Uproxx into a contract situation, where I make a set amount every month that keeps me under my benefits limits but allows me to pay my student loans. I would point out here that I also save money by living at home, but I assume that was implied by “we blog.” I am literally firing off posts from my parents’ basement, often while unshaven and wearing sweatpants. Everything you’ve ever heard about anything is true.

One other thing that will come up later: While I was in law school, Pennsylvania froze a program called Act 150 due to various spending cuts. Act 150 is a program that allows people with disabilities to return to work and keep their home health aides regardless of income, provided they contribute some small percentage that is calculated on a sliding scale. (The more you make, the more you pay, and so on.) This program is good, both on a micro level (I like money and feeling like a contributing, tax-paying member of society) and on a more macro level (if I’m employed, then I’m paying into the program, and paying taxes, and on a private insurance plan through my employer instead of one funded by the government). Unfortunately, with it frozen, people are only being added to the program as others come off of it (read as: dying), so blogging part-time it is. Still, I am living at home and not in a facility. I’ll call that a win. A squeaker, but still a win. Not ideal, though.

CUT TO: 2015

A new governor takes office in Pennsylvania and a boatload of Obamacare dollars flood through the state via Medicaid expansions. Act 150 reopens. These two things develop separately, as I understand it, maybe a few months apart, although I imagine an influx of money in one area might free up some money in another. Either way, I pounce. I contact the bigwigs at Uproxx — who were great about all of this from Day 1 — and ask about going full-time. They say yes. By March 2016, after sorting through some paperwork, I am gainfully employed and on an insurance plan through my employer (saving the government a chunk of Medicare/Medicaid money), with my aides covered by this wonderful, now-thawed program (which I pay into). I abandon the pseudonym I had been using and everything, to give it an honest go. This is good. Weird at first (I still panic sometimes when people in the real world say “I read a thing you wrote”), but still, good. People who knew me back when I was injured literally cry happy tears when I tell them I have a full-time job now. I do not know how to handle this, so I just shout “STOP CRYING” at them.

CUT TO: June 2017

I am not informed enough yet to understand all the ins and outs of the new Republican health plan, nor am I stupid enough to sit here and read the whole thing and give myself a panic attack over something I might be misinterpreting. Here’s what I do know: There will be pretty drastic cuts to Medicaid, and I’m not sure how that will weasel its way into my life. It might not at all, in the short term, depending on how and where the cuts start. But if the cuts suck up money from one place, other cuts might have to come from somewhere else, and my fear is that Act 150 will go poof again, which would basically force me to quit my job (because otherwise I’d be back to the “pay for aides out of pocket” situation we discussed earlier), and, ironically, try to get back on Medicaid once I lose my work insurance, assuming the old programs I was on are still funded. This would be bad.

It is also, I admit, wild, anxiety-riddled speculation, because we are a little bit away from finding out how all this shakes down, or if it will shake down at all. I could very well be fine for the immediate future. I also might hit the Powerball next week or get an eight-figure book deal off of this fire discussion of government red tape, in which case, disregard all this personal history and lose my contact info. I’m rich now and will need fancy new rich friends. Beyoncé, possibly. I will win her over with all those Vin Diesel opinions I have.

The point here is not for you to start worrying about me. Please don’t do that. I hate it. The point here is this: Let’s say you consider what I’ve done so far “a success story.” Guy gets paralyzed, returns to school, gets a law degree, becomes a writer, gets a full-time job, gets followed on Twitter by both Ghostface Killah and Raekwon (this is 100 percent true and hilarious, for the record), etc. Not trying to toot my own horn here, but that’s not too bad, all things considered. And it all would have been impossible without the programs I mentioned throughout this post, most of which are funded with money from Medicaid and other public welfare sources. So even if I end up being okay because — fingers crossed, and yes, I can cross my fingers — I squeaked through when things were good and I get grandfathered into the programs I’m on now, things might look a lot different for another 23-year-old who just broke his neck, say, while you’re reading this sentence. He might be facing a much tougher road. He might not be able to return to college. He might not be able to live at home and earn a livable wage. He might get stuck in a financial hell because being handicapped is just stupid expensive, all the time. He might end up getting dumped in a nursing home by age 25 because there are no other workable options available to him.

That would be bad. That would be beyond bad. That would be heartbreaking. Especially because it doesn’t have to happen.