By VIRGINIA JEFFRIES and JEANNE PINDER
After two weeks out sick with Covid, an executive in Oregon returned to work. While she still had a cough, she and her doctor both believed the worst was behind her.
“There wasn’t a conversation about Covid lingering or continuing,” she said, speaking on condition of anonymity. “It was just like either you were asymptomatic or had a mild case that you got over at home in two weeks. Or you were on a ventilator and probably going to die, right? Those were your only options.”
Her return to work would not last long. Today, nearly six months later, she is still not recovered from her bout with Covid and has even developed new symptoms after the virus itself cleared up. She spends her days stuck at home with debilitating fatigue and cognitive impairment, struggling to make the case to her insurance company that she is too disabled to properly function at her job.
The executive, who had no underlying health conditions before contracting Covid in March, was eventually diagnosed with post-viral fatigue syndrome, a long-term condition with a broad range of symptoms that afflicts people after an acute viral infection.
By July her cognitive problems were so severe that she required the help of her partner to manage basic tasks and she knew she had to apply for disability. Fortunately, her employer was encouraging.
“They support me to have as much time as I need to actually get better,” she said. “They want me back at my full capacity.”
In the end, her bosses’ support didn’t matter to the insurer. Her claim was denied.
“It was honestly one of my worst days of the whole Covid experience,” she said. “To be on the phone in a condition where I can’t function and can’t do basic life tasks and to have someone tell you, there is no evidence of impairment.”
She is currently in the process of appealing the decision.
What is disability anyway?
Disability is always a complicated topic, and it’s more complicated now with the murky course of Covid, said Gary Phelan, a partner at Mitchell & Sheahan, P.C., an employment and labor law firm based in Stratford, Conn.
The word means different things in different contexts, said Phelan, who teaches disability law at Quinnipiac University School of Law and who co-authored a book called “Disability Discrimination in the Workplace.”
When most people hear the word disability, they think of the Americans With Disabilities Act, which protects people with a substantial impairment of a life activity like seeing, hearing or breathing, Phelan said, focusing on whether a person needs an accommodation to perform a job.
The other kind of disability, short-term or long-term disability, he said, “in many ways, it’s the opposite. It’s where you, due to your medical condition, are not able to do your job. What often happens is where confusion arises, they can be intertwined.” And short- or long-term disability can carry financial benefits: An insurer under contract to provide disability via your employer’s policy can vet you to see if you qualify, and approve or deny your claim. Some states like New York, also require employers to provide disability for off-the-job injuries or illnesses, providing weekly payments.
Many long-term Covid patients say they are unable to work, but they report difficulty in getting disability benefits, which generally come from their employer’s disability policy. If they are unable to work, shouldn’t they get the same benefits as someone disabled in a car crash or by cancer?
Illness with an uncertain course
Phelan said one problem is that Covid has a course of illness that is uncertain.
“It’s not like ‘I have cancer’ — it’s somewhat amorphous,” he said. “It affects people in a variety of ways, everything from fatigue, to shortness of breath. With respect to long- and short-term disability, often they go by charts — the more concrete the better. And Covid-19 doesn’t lend itself to concrete: ‘you have this condition and this is how you treat it. This is about how long it’s going to take to recover.’
“Anytime you have something where there’s uncertainty, it creates skepticism. I read an article about long-haulers in The Boston Globe. There were people commenting ‘it’s all in their heads, this is not a real thing, it’s hypochondriacs, it’s psychosomatic.’ That’s what I think is contributing to it.
“Also, it’s new. And the medical community isn’t providing a whole lot of clarity. When I’m representing someone with a disability, I always tell people we need to have some estimate of when you’ll be able to return to work. A lot of times, for long-haulers, the answer is ‘I have no idea.’ And that is doctors being honest.
“So it’s all that — the combination of things, that there’s no concrete diagnosis, and it manifests itself in uncertain ways, I think that’s what’s leading to a lot of denials.”
Part of the confusion seems to be baked into the narrative about Covid that was spread widely in the early going in the United States — either it kills you, or you have a two-week flu, sometimes more or less serious, but about two weeks. That is not true, as we now know, but it’s governing a lot of policy and legislation.
Long-term Covid patients applying for disability have reported that often healthcare providers don’t believe they are sick. That’s what happened to Candace Taylor, who has suffered with difficulty breathing, chronic chest pain and fatigue since being diagnosed with Covid in March.
“I didn’t have a good experience with my pulmonologist,” said Taylor, 37. “She refused to fill out my disability paperwork because my CT scan was normal.”
Taylor’s disability claim was denied after that. She is in the process of appealing the decision.
Absent or inaccurate tests
Another factor is the dearth and unreliability of the tests. Many people who believe they are in the active infection stage could not or cannot get a test. Beyond that, the tests for active infection have a false negative rate as high as 30 percent — meaning that 30 percent of those tested are negative but actually do have the illness.
In addition, the tests for the presence of antibodies, supposedly reflecting a previous exposure, are themselves unreliable. They have been intermittently hard to get too — for some people they have been free, though increasingly we are hearing reports that insurers and providers are charging for these tests.
So if you couldn’t get a test, or the test results were unreliable, the upshot may be that a doctor looks at your chart and says “not Covid.”
All these obstacles also apply to Social Security Disability Insurance and Supplemental Security Income, federal programs that supply cash for basic needs for disabled people. The rules for qualifying for federal aid are complicated and are open only to people with long-term disabilities; most Covid patients have not been sick for long enough to meet these requirements, experts say.
Because regulations and benefits can vary by state, or by employer there is no one-size-fits-all type way to go about applying for disability.
“I’ve been encouraging people to seek out their local independent living center, which is government-funded,” said Alison Sbrana, a Denver-based disability specialist.
Local disability advocates and independent living centers are uniquely able to help people find resources in their own communities, Sbrana said.
“Beyond that, usually there are other social workers and case managers that exist in the community, whether they work for nonprofit services, or maybe they work for the larger health system, Sbrana said. “But that’s really why you kind of need to go to your independent living center first and find out what is available near you.”
Families and Medical Leave Act leave
Sometimes people with Covid who can’t get disability are advised to take a leave under the Families and Medical Leave Act. This is unpaid leave, of a maximum of 12 weeks per year, under certain conditions. F.M.L.A. is not paid, unlike short- and long-term disability. This can be useful in some cases.
In F.M.L.A. leave, Phelan said, the term is “a serious illness” because of which you are unable to work. That could be intermittent — say, chemotherapy for cancer every Thursday, on which day an employee cannot work and might qualify for intermittent leave under the F.M.L.A. It’s also possible that someone would be caring for a family member with a serious illness — say a teacher with a spouse who has a serious illness putting him or her at high risk in case of Covid exposure. “The school doesn’t have to accommodate the teacher because of that” by granting disability leave, he said. “But at the same time, they may be entitled to F.M.L.A.”
Some teachers are citing F.M.L.A. in the return to the classroom debate — saying that an immunocompromised child cannot be exposed to a parent who has been in the classroom all day, and therefore cannot work without endangering that child. But that leave is unpaid.
The patchwork social safety net
In the long run, Covid may lay even more clear the threadbare, patchwork nature of the nation’s social safety net — unemployment insurance, short- and long-term disability, workers compensation for those who contracted Covid on the job and are still unable to work, and other employee protections seem to be falling short for many Americans.
For the executive in Oregon, appealing her insurer’s decision has not been easy, especially with her post-Covid cognitive troubles.
“We are trying to figure out what else to submit and I’ve been trying to, but cognitively I can only do so much,” she said. “The insult to injury is that I can’t do something in order to appeal this, but they’re telling me there’s no evidence of me being impaired. It’s like the great irony.”
What you can do
For a broad how-to, Sbrana did a question-and-answer session with us that we posted on the blog. Find it here.
Trying to get a leave of absence from work or make a workers comp claim? It depends on the circumstances, but “I do think it’s important to seek legal advice,” Phelan said. He added that some lawyers might be focused on unemployment, where others specialize in disability law.
The National Employment Lawyers Association has about 3,000 lawyers nationally, Phelan said. He often refers people to N.E.L.A. members in another state.
Support groups for Covid patients can be a great first stop, Phelan said, “based on the individuals I’m representing, because that’s where they can get ideas. And that’s where people know what they’re going through.” In addition to concrete knowledge, he said, it’s clear to people comparing notes there that “particularly because this has become so politicized, people are going to be negative, and this can help them get them through each day and try to navigate.”
Survivor Corps, founded by Diana Berrent, one of the first people in the New York area to test positive for Covid, works to connect survivors with medical research. Their Facebook group has over 100,000 members as of September 2020.
The Body Politic Covid slack support group has about 8,500 members as of late September 2020. Body Politic started the COVID-19 support group after two members became sick with coronavirus in early March and realized they needed a community of people like themselves.
The Covid Long-Haulers discussion group on Facebook is very active, with about 8,500 members as of late September 2020.
The Covid Long-Hauler advocacy project on Facebook, with about 800 members as of late September 2020, was founded by Karyn Bishof, a firefighter and paramedic in Florida.
There are numerous other support groups on Facebook — Ladies Fighting Covid, Long Haul Covid Fighters (Round 2), Florida Coronavirus Updates and Information, for example.
Reddit also has a number of coronavirus forums, many with a geographic bent: r/covid19positive, r/coronavirusNY, r/coronavirusNYC, r/coronavirusTX, r/coronavirusTN, for example.
On the Body Politic Slack group, patients have begun a crowdsourced list of doctors that they recommend. Many are in the New York area, and there are others elsewhere in the United States and overseas. At the top of the document, it says: “This list is maintained by the Body Politic Covid-19 support group — recommendations are from fellow patients in the group. Body Politic does not endorse any providers. Please keep in mind that each patient can have different experiences. This is a living document so we encourage group members to submit new recommendations or updates for providers who are knowledgeable and helpful in managing symptoms after Covid-19. If you see an issue listed on the spreadsheet, please contact an admin in slack.” Here’s the list.