As we face a new reality where more than half of Americans have had COVID [1] , a new Policygenius survey indicates many people are underestimating the potential for long COVID to disable and deprive them of the ability to work.
According to the 2022 Policygenius Long COVID Survey, well over half the adult population (61%) underestimates the prevalence of long COVID, while 44% either don't know how they'd cover expenses if they were out of work for three or more months, or know for sure that they couldn't. Meanwhile, only 14% of Americans have disability insurance to help provide income if long COVID prevents them from working, according to data from LIMRA. [2]
“Every single person in this country is at risk for long COVID,” says Alison Sbrana, a board member of the Body Politic COVID-19 Support Group. “You do not know if you will get it or not. If there was a 30% chance that if I got in my car today I would be disabled on the way to the grocery store, would I get into my car? That is the risk.”
People with long haul COVID have lingering symptoms and health problems for weeks or months after recovering from the acute phase of COVID, which usually lasts about two weeks. Some people infected early in the pandemic have now been sick for two years.
The most commonly reported symptoms of long COVID are fatigue and memory issues, [3] though symptoms can vary widely, including difficulty concentrating, cough, headache, heart palpitations, sleep problems, lightheadedness, joint and muscle pain, and more. [4]
A “mass disabling event” in the making
Solve M.E., a nonprofit focused on research and advocacy for chronic fatigue syndrome, estimates that about 10% of people with long haul COVID — or potentially 7 to 14 million people in the U.S. — will develop “disabling” long COVID, making them unable to work full-time or at their pre-illness working level. [5]
“Even our lowest projection, seven million affected by [disabling long COVID], is a big number,” says Phillippa Dunne, co-editor at TLRAnalytics and co-author of Solve M.E.’s analysis. “That’s 2% of the adult population. Even in the context of our very large labor force, seven million is a significant number. For example, the shattering job losses of the Great Recession amounted to about eight million. And we know COVID cases are underreported, so these numbers may well be too low, and with infections continuing, they will continue to rise.”
While all long haul COVID cases have the potential to be life-altering, “people with [disabling long COVID] may face lifelong health problems and tough financial straits,” says Dunne.
Rachel Bean is one of the 7 to 14 million people who are experiencing disabling long COVID. The former social worker tested positive for COVID in May 2020, but did not experience any symptoms. Over the next few months, though, she didn’t feel right. “I’d walk the dog and then I'd miss a day or two of work because I thought I was getting the flu, I was so tired,” she says. She started missing four to five days of work every month. In January 2021, she took medical leave for three months, and then in August 2021, she left her job. She has not been able to work since.
In fact, she hasn’t been able to do much of anything since: she mainly stays in bed. She’s even had to stop reading recently; it exhausts her too much. “I don't leave the house more than once a week,” she says. “I literally have no money, no income. My parents are like, ‘can you work from home?’ But I cannot fathom working. I cannot imagine working. My body is so in control of me, it just refuses.”
No safety net in sight
For people like Bean who cannot work, paying bills and buying groceries quickly becomes difficult, if not impossible.
“The safety net in this country is lacking,” says Andrew Wylam, co-founder of Pandemic Patients, a resource and advocacy organization for people with COVID and long haul COVID. “After becoming newly disabled, people's lives can quickly get turned upside down as they struggle to make ends meet.”
While applying for Social Security Disability Insurance (SSDI) is an option for some people, the prerequisites to even apply are steep: You have to have earned enough “work credits” (for people 31-42, that means working at least 5 of the last 10 years, with younger people needing to have worked less and older people needing to have worked more), you have to be unable to do “any substantial work” due to your medical condition, and your condition needs to either have lasted or be expected to last one year, or to be terminal. [6] After you submit your application, it usually takes three to five months to get a decision. [7] If approved, the average average payment is just over $1,300 a month. [8]
Sbrana, who has been living with a non-COVID post-viral illness for eight years, gets $1,100 a month from SSDI. “It’s certainly not enough to live off of,” she says. “You cannot rely on SSDI to be a full income replacement. You have to use it in conjunction with other government assistance. We’re on SNAP, and I’ve been on Medicaid for years. And I have family support. There's just no way I could do it without them.”
Bean reached her one-year mark after first taking medical leave in January of this year; only then was she able to submit her application for SSDI. Since her symptoms started, no doctors could definitively say she would be unable to work for 12 months, so she had to wait until that was true to apply. She’s still waiting to hear back. “I don't feel optimistic about getting [SSDI] in a few months,” she says. “The stats are not in my favor for a first-time applicant.” More than half (53%) of initial SSDI claims are denied. [9]
Disability insurance can help — if you have it
Outside of SSDI, private disability insurance is another income option for people who can’t work — but very few Americans have it.
LIMRA, the insurance trade organization, reports that in 2021, only 14% of Americans had disability insurance either privately or through work, which marked a 10-year low for disability insurance ownership. The rate peaked in 2012 at 31%, and held steady at 20% between 2017 and 2019. [10]
Even before COVID and long COVID, Americans' chances of becoming disabled were already high: 25% of Americans will be out of work for a year due to disability during their working life (age 20 to 65). [11] But it’s not something people like to think about, or plan for.
What Noah Damsky of Marina Wealth Advisors says clients rarely bring up planning for a disability, and that the pandemic hasn’t really changed that. “We had one client recently ask about it, but [it’s not] top-of-mind for clients,” he says. As a financial planner, though, it’s top-of-mind for him. “[People who] depend on their income to survive — most! — should consider disability insurance. And for people with dependents, disability insurance becomes even more important so the financial wellbeing of the family is not at risk.”
Patrick Hanzel, CFP®, is a certified financial planner and advanced planning team lead at Policygenius. “I’ve had far too many conversations with people who don't start their search for the right coverage until after they’ve been diagnosed with something, or have started missing work without pay,” he says. “And then it’s too late — disability insurance is not able to cover those pre-existing conditions. It’s important to make sure you get disability insurance while you’re healthy and still working.”
Even If you’ve had COVID, you can still get disability insurance — but there may be exclusions. “If you are experiencing any effects from long COVID symptoms, you won’t be able to take out a new disability policy to cover it, since it’s considered a pre-existing condition,” says Mark Friedlander, director of corporate communications at the Insurance Information Institute. “However, if you were already covered by a disability plan, and contracted the coronavirus which led to long COVID symptoms, you would have coverage under your existing plan.”
Getting a claim approved for long COVID, however, could be another hurdle. Bean had both short-term and long-term disability through her work, but both claims were denied. “Because I’d had all this testing that was pretty normal, they said you have no clinical evidence that you’re not able to work,” she says. “With symptoms like brain fog, difficulty concentrating, and fatigue, people may be having a hard time satisfying their policy's definition of disability,” says Wylam. “It's hard to quantify these symptoms and their impact on a person's ability to work.”
Sbrana says unfortunately this is not uncommon with claims for chronic illnesses without biomarkers, like long COVID. She says that if you can afford it, disability insurance is a good option, though she is adamant that people applying for disability benefits for a post-viral condition like long COVID should hire a lawyer to help file their claims. “I think particularly with long COVID you need a lawyer who is experienced with M.E./C.F.S. and illnesses with no clear biomarkers,” she says. “You need a lawyer who knows what to do with these claims.”
Planning for disability is possible
“I would advise a client who was worried about [long COVID] to obtain long-term disability insurance,” says Erik Baskin, founder of Baskin Financial Planning. “It is not cheap, but if this is a big concern then it will be the best way to protect yourself.”
Private disability insurance policies cost about 1% to 3% of a person’s salary, depending on their coverage and their health profile, including age. For some people, that cost is prohibitively expensive. For others with certain health conditions or pre-existing conditions, they may be unable to get policies at all or have policy exclusions for the very conditions they are worrying about disabling them.
If you cannot get a private policy and don’t have coverage through work, another option would be to find a job that gives you the coverage you need; approximately one-third of employers offer long-term disability to their employees. [12] “If a client is concerned about the risks of long COVID and does not have access to disability insurance coverage, I recommend considering a new job,” says Katy Cook, principal at Abacus Financial Planning. “Look at the major employers in your area, check out their benefits online, and ask friends about their benefits. With the current job market, it’s a great time to look for a new position.”
Of course, not everyone will end up with coverage. “People with a workplace disability policy [or private disability policy] are probably in the best position [if they get long COVID], as long as they can become eligible for benefits,” says Wylam. Otherwise, “it’s a person's own savings and ability to financially plan for situations like this.”
According to the 2022 Policygenius Long COVID Survey, many Americans still have some planning to do: nearly half (44%) of them— and 54% making under $40,000 — either don’t know how they would, or know they couldn’t, meet expenses after any insurance payouts if they were out of work for three or more months. The remaining 56% say they’d turn to a mix of personal savings (39%), family assistance (18%), credit cards (20%), and/or retirement savings (15%).
People who can live off personal savings or rely on family assistance are likely in the best position. Damsky was surprised — pleasantly — that the rate of people turning to retirement funds was so low. “I think it speaks to the increased savings rate over the last several years that enables folks to not have to dip into retirement to fund non-retirement emergencies,” he says.
Whether those personal savings are enough is another story. “The alternative [to disability insurance] is to self-insure through saving up cash,” Baskin says. “This may be difficult to do for those with lower incomes and little current assets, but can be an option for some people. This would require potentially a year or more of living expenses to insure a long term disability.”
If a year of expenses seems absolutely daunting, remember that it doesn’t necessarily have to be a year of expenses at your current lifestyle.
“Play out the situation in your head as to what would happen if you become seriously disabled for a long period of time,” he says. “Are there friends or family that have money that would potentially be of assistance in a worst-case scenario? Could you cut living expenses down to the bare minimum and move to an area with a lower cost of living? Could you work from home doing something in the new age of telework?”
For Bean, one option available to her after she had to stop working was her experience as a gifted fundraiser. Before she was ill, she organized mutual aid cash fundraisers for strangers — $20,000 for a someone’s house downpayment, $500 for someone’s back rent — and she’s used her experience in running these “barnraisers,” as she calls them, to support herself. “I don't think it would have worked if I hadn't been facilitating a network before I started fundraising for myself,” she says. Her initial fundraiser raised $12,000, and another one for her birthday raised $3,000. She’s currently running a new one, posting periodically on Twitter and Instagram and emailing contacts who aren’t on social media. The hook for this fundraiser: the two-year anniversary of her COVID diagnosis. “I’m ‘celebrating’ by raising money to pay for my existence,” she says.
Methodology
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1241 adults. Fieldwork was undertaken between 7th - 8th April 2022. The survey was carried out online. The figures have been weighted and are representative of all US adults (aged 18+).
Additional reporting by Amanda Shih.
