Guest post: The hell of seeking paid medical leave
Nothing is simple, even giving up
Today, I’m republishing a post from last year by Samantha Grasso from Discourse Blog, the wonderful site that grew out of the ashes of my former employer, Splinter. If you read the Discontents newsletter, you’ll know about them already (and if you don’t, Discontents is a great way to keep up with some of the best Substacks out there).
This story is about one of the many holes in America’s safety net: Paid medical leave. Samantha’s partner is a Type 1 diabetic who suffered lingering symptoms from a fight with the Epstein-Barr virus, including breathing problems, which were worsened by anxiety. When those problems flared up last year, he needed to take time off work. He qualified for unpaid FMLA leave, which meant he could at least keep his health insurance and his job while on leave. As Sam notes, that insurance coverage was vital to ensure he could keep getting his insulin.
But even with the support of his managers at work—already far from a given—his quest for a few weeks off to recover hit a major hurdle: He was denied the short-term disability coverage that would have paid him 60 percent of his salary while he was out.
The rules that govern even unpaid Family and Medical Leave Act leave are below the bare minimum. 44 percent of American workers don’t qualify for it, by the US government’s own estimates. You don’t qualify for FMLA if you’ve been at a company less than a year, or work at a company with fewer than 50 employees “at that location or within 75 miles of it.” You must have worked 1250 hours during the previous year, about 24 hours a week. All of these things have nothing to do with whether a person becomes sick or disabled; they have to do with whether the government will stop your employer replacing you while you do. Even if you do qualify, if you want wage replacement via disability insurance, you’re subject to the assessment of a private company—and, as Samantha’s partner found, their criteria can be bafflingly strict. That’s how they make money, after all.
I applied for short-term disability insurance twice when I was at my previous job; first to cover a period of intense near-daily migraines in January 2020, and second to replace paid sick leave when I ran out of it by August. The first time I didn’t qualify because I hadn’t worked there a year (but got a month’s leave at full pay anyway, because they figured this out too late, which was very funny); the second, because the company had less than 50 employees. I have no idea how that would have worked, to replace paid sick leave for migraines that happened in random episodes on a weekly-or-so basis, unpredictably and without warning. After the second time, and with my request for more paid sick leave still denied, I quit and started this newsletter.
Most people can’t do that. They can’t take risks with their insurance coverage, like Samantha’s partner, or they can’t be sure they’ll get another job, or afford groceries while they’re unemployed. You could try your luck with unemployment insurance, but there’s no guarantee you’ll qualify; you have to be “able and available” to work some sort of job to qualify, and if you are too sick to work your current job, you are likely not that.
America famously has no mandatory paid sick leave or parental leave; the rules we do have requiring employers to help out are laughably weak. They are premised on protecting the employer from having to subsidize their employees’ wellbeing in as many situations as possible, although we have no problem making (large) employers pay thousands of dollars per employee for bloated, profiteering private health insurance. Just like health insurance, it is stupid to pretend employers can be trusted to adequately provide for their employees’ continued health with fair access to paid leave; why would they, when they’re only incentivized to do so as long as it secures their productivity and profits? (Plus, we know employers can’t even make rational decisions about that; that’s how you get stories like this.)
But the structure of the leave system isn’t the only problem. Samantha relates how her partner had to enlist his doctor’s help in this—what if a chronically ill or disabled person can’t afford those copays, or has a huge deductible? Even on my Gold insurance, I pay $50 to see a specialist, and the practice charges a fee for these letters. Or what if their overloaded providers don’t have the time or resources to fill out the endless forms, and the patient doesn’t have the time to pester them about it?
The decision not to provide healthcare to everyone as a right leeches poison into every aspect of American society, from fighting a pandemic, to work, to family. Once a country has made that decision, to say it’s acceptable if a person dies because their cancer or heart disease or diabetes wasn’t treated, why would it bother to provide sick leave? They already said it’s okay for people to die. Everything else is just icing on the cake.
Please enjoy Samantha’s post, and go check out the rest of Discourse blog.
Trying to help my husband get paid medical leave from work was a lesson in the nightmares this country puts people through.
I spent a not-insignificant amount of time this summer trying to find out how someone could take time off work for mental health and still get some kind of financial support even if their employer didn’t offer paid medical leave. There were few, if any, actually helpful pieces of information — at most, I found a Wall Street Journal piece about young people taking mental health leaves during the pandemic. But it wasn’t a blueprint by any means.
I was doing this research for my husband, Christian. Now, amid the news that Democrats have left paid family and sick leave out of the framework for his Build Back Better bill (there’s a slim chance that a very reduced version of family leave might crawl back into the final text), I kept returning to that experience from earlier this year: feeling lost and unprepared, and unable to get the person I care about the most the things that he needed to prevent another mental break.
Christian, a long-time Discourse Blog subscriber and supporter of both me and socialized medicine, encouraged me to write about what we went through. So I am. I’ll preface this by saying that Christian is doing better, and that we have been fortunate to have enough resources and family help to get through this—something I am very aware that not everyone can count on.
One night last summer, while getting ready for bed, Christian realized he was having trouble breathing. His chest felt tight, and as much as he tried, he couldn’t take a full breath. He had felt this tightness before, when he contracted Epstein-Barr virus at the end of 2018, but this was the first time it felt unrelated to the long-term symptoms of the virus.
We tried a lot of things — an inhaler, guided breathing meditations, moving his workstation from our bedroom to my office, walking outside more often. But he continued to have a hard time breathing.
As the months of the pandemic and the endless hum of working from home droned on, his shallow breaths turned into something worse. He’d get winded while working late hours, or talking about things that stressed him out, or during arguments, even our pointless ones. His breathing problems would also flare up when he was stressed, especially around people who didn’t follow COVID protocols and weren’t taking the pandemic as seriously as we were.
Between work and the pandemic, Christian had plenty of reason to be stressed. The residual symptoms of the Epstein-Barr virus would make him extremely tired at random times, or make his lymph nodes swell to uncomfortable, noticeable sizes. But he also has Type 1 diabetes, which meant that a COVID-19 infection would likely make him severely ill. So when the pandemic hit, we didn’t pod with other people. We stayed outdoors when we saw family. We worked from home, a norm for me but an adjustment for him.
The longer the pandemic went on, and the more inescapable work became, especially while employed by an “essential business” that never shut down, the worse his anxiety got. In July 2020, he had a panic attack, after an unexpectedly late night at work. His breathing got worse around the holidays, dealing with family, and in December his doctor prescribed mediation. In May, his job asked everyone to go back to the office. Even though there were COVID precautions, he started having breathing issues again, with things getting worse as the day went on. He made it less than a week before he needed to work from home again. And then came another week of closing books, and returning to his desk at home at night, staying up past midnight to get them done, bringing on another series of panic attacks.
One of those nights, he cracked. This panic attack was far more frightening than the one in July. It terrified me to watch him be worn down by a stressful, thankless job. It scared me more because, no matter what he told me, I feared that if we didn’t get him help, I would lose him, through physical health complications or otherwise. I knew he knew he couldn’t go on like this, but I don’t think he saw a way out. So at that moment, I told him we were making an executive decision right then and there, that things could not stay as they were. As he calmed down, we made him a plan.
He was going to have to figure out how to take time off from his job, regardless if it was paid, and still stay employed in order to keep his health insurance. During that time he was going to take a break, and figure out what he needed to do for his future, for his mental health, and potentially for his work, too.
We knew the process was going to be difficult, but this seemed to be the only way through it — maybe, in different circumstances, he could have done the simpler thing and just quit and taken a sabbatical from work while finding another job, but given that he needs insulin to live, there was no way he could go any significant period of time without health insurance coverage. Even quitting his job and getting marketplace insurance would be extremely cumbersome on top of being a financial burden, with Christian having to switch his medications and prescriptions no longer covered under his new plan. (This, incidentally, is also why we so desperately need Medicare for All, but that’s for another blog.)
Christian’s parents supported his decision to take the leave, and his managers were also extremely supportive when he asked them for their help in taking the leave. His HR person was supportive too. Then we got into the specifics. Under the Family and Medical Leave Act, Christian was entitled to up to 12 weeks of unpaid leave, which would start with him using up his remaining 10 days of paid time off. FMLA guaranteed that his health insurance would remain intact and that he could then come back to work once his leave was over. But that was still unpaid—better than nothing, but not enough for someone who pays hundreds of dollars more in copay with each insulin and test strip refill.
However, Christian could still get paid up to 60% of his bi-weekly salary for the 12 weeks if he was approved for short-term disability insurance, which he has as part of his employer’s benefits plan. So we tried it.
It was a horrible process. Even though he needed to start his leave very, very urgently, Christian waited for weeks for a response from the insurance company in charge of his disability claim. He had to go to a doctor and describe everything that was happening to him: the physical symptoms, the medication that wasn’t working very well, the severe mental stress the pandemic and his job were putting him through. He’d also get calls from his case manager, asking him to clarify parts of his claim — there were issues with him saying the stress was work-induced in addition to being pandemic-induced. Then his doctor needed to fill out another form, and it had to be submitted in this specific way, and then there was another form, and another call from the insurers asking for more information. It was this never-ending cycle of “will I get 60% of my salary paid out to be while I take a break from this suffering,” and it lasted about a month before he eventually took his leave. All the while, Christian’s anxiety continued growing. He was clearly desperate to stop working but unable to take off without knowing his income situation.
This is the part where his family took care of him, and us, something that we were immensely lucky and privileged to have. In the situation that his short-term disability claim were to be denied, his dad offered to cover him. Eventually, the wait got too long, and Christian had to accept the help. It wasn’t until a month after that—around two months since he filed the short-term disability claim—that he was told by the insurance provider that his claim was denied. The case manager couldn’t verify that Christian was stressed because of the pandemic, and told him that his work-related stress didn’t count because it was caused by the job itself. It was an “on-the-job accident” to file under workers compensation, though mental health issues don’t typically count for such things. (Let me just repeat that: his job was providing the insurance, but the terms of the insurance rendered work-related mental health problems ineligible for financial assistance. This is life in America.) We didn’t bother with the appeals process because we were tired, and now, we didn’t have to.
And herein lies the reality of what the paid family and medical leave process looks like for people who don’t have the kind of support we did. If it weren’t for his parents’ support, Christian would have kept working until the denial notice, and probably would have pursued an appeal on the short-term disability insurance, all while continuing to work through that process, too. If it weren’t for that support, I can’t imagine that taking 12 weeks off for his health would have done him much good with the additional stress of being unpaid. It scares me to think about what either of those situations would have looked like.
I’m glad Christian was able to take that time off because I saw how much it helped him to be able to leave work and take care of himself and not worry about anything else. It makes me all the angrier to think of the other millions of people who can’t afford to take family and medical leave, who went through all the trouble Christian went through just to also be told by their insurance company, sorry, you’re on your own. I get depressed thinking about how difficult that process was when Christian was in so much pain. I would not wish this on anyone else.
In a different country, this would not be an issue, because the U.S. is the only country of its kind with no guaranteed paid family and medical leave. And it looks like it will stay that way. We could have simply ensured that anyone who needs it can take the time they need to heal, or take care of themselves, or their families, without worrying about where their next paycheck will come from. Instead, the Democratic Party crafted a lousy paid leave plan, then gutted it, then ditched it altogether. And so we remain stuck being a country that supports this false notion of personal responsibility over solidarity, that is run by people who think that going through all this red tape for a chance to take time to recover from a pregnancy or a mental break means the system is working. We are stuck with a Democratic Party which, under Biden’s leadership, would rather be polite and bargain away its power than use it to improve these intolerable systems for the people it claims to have the best interests of. Christian is doing better. He was lucky. But it shouldn’t take luck for you to able to get the help you need.