Have long COVID? Here’s what to know about disability insurance

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Since early in the pandemic, people with long COVID have faced challenges in applying for disability benefits, including from their employers, insurance providers and the U.S. Social Security Administration. Applications often take a long time and are denied even for people who clearly have debilitating symptoms, leading to years-long, arduous appeals processes. The same has been true decades prior to 2020 for people with other infection-associated chronic diseases.

To learn more about the disability insurance system, Betsy Ladyzhets spoke to Barbara Comerford, a longtime disability lawyer based in New Jersey who specializes in these cases. Comerford has represented people with myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or CFS) for more than 30 years, including high-profile cases like that of journalist Brian Vastag.

Comerford discussed how the process works, her advice for putting together applications and appeals, how long COVID has impacted her practice, and more. This interview has been lightly edited and condensed for clarity.

Barbara Comerford: Should we focus on disability insurance, or do you want to focus on Social Security disability, or both?

Betsy Ladyzhets: Both, because people (with long COVID) are applying for both.

BC:  Right. And often, people think they should only apply for one, (but they should apply for both.)

Most of the disability plans that people have are often through their employer. Those plans are known as ERISA plans, referring to Employee Retirement Income Security Act. It was created in the 1970s. … Congress created this regulatory scheme and then immediately created a zillion loopholes that corporations can drive a truck through. Later, ERISA covered all employee benefits in general.

Insurance companies wound up selling policies to corporations saying, “You can get the best people if you offer incentives.” And what’s a better incentive than, if someone gets sick, they can collect a substantial percentage of their salary until full retirement age? These are the sorts of perks that … People think, “If something happens to me, I’ll be protected.” The promise of these policies is that they will give people, usually, between 50% and 80% of their pre-disability income if they satisfy the requirements. Well, that’s a big if.

I’ve been doing this for 38 years. And I can tell you that 38 years ago, these (disability claims) were not problem cases. I used to do them for free for my litigation clients … But over the years, and really starting after 2001 with Sept. 11, all hell broke loose. They (insurance companies) began to get very aggressive. Every time there is an economic downfall, whatever it is, they get extremely aggressive. So you can imagine, with the onset of the pandemic, they knew what was coming.

I did, for many years, advocacy for ME/CFS cases. I represented thousands of people … A lot of my colleagues say, “Long COVID Social Security cases are almost impossible” because they don’t know what to do with them. My office hasn’t found that to be the case. I think the difference is, you have to document these cases with as much objective documentation of symptoms that people have … Get neuropsych testing, cardiopulmonary exercise testing and other tests.

I started doing webinars and seminars (about disability benefit applications) in 2020 because I knew this was coming. At that point, they weren’t calling it long COVID, they were just saying, some people with COVID weren’t getting better. But I knew it was going to turn into another ME/CFS disaster.

Click here for tips for applying for disability benefits

• Barbara Comerford, a longtime disability lawyer, recommends that people applying for benefits extensively document their symptoms.

• Medical tests such as neuropsychiatric testing and cardiopulmonary exercise testing are her recommended method for documentation, though such tests can be expensive.

• Comerford says applicants should be careful to find lawyers and medical providers who have experience with these cases and won’t dismiss their symptoms.

• During the appeals process, Comerford recommends requesting a company’s administrative record and combing through it for any evidence that they abused judgment, cherry-picked evidence or made other errors in assessing the case.

• Make sure to follow deadlines for filing appeals, as cases are closed if documents are not submitted on time.

BL: How have you found the rise of long COVID has impacted your practice? Do you find you’re more in demand now?

BC: We’ve always had a high volume of cases. Quite a few of them were ME/CFS cases. We did a case, Vastag v. Prudential, in 2018. Brian Vastag, who was a science writer for The Washington Post, was my client, and I could not get over how aggressively Prudential was just dismissing him because it was an ME/CFS case.

And the same is happening with long COVID. We do cases all over the country on long COVID and ME/CFS. It’s my livelihood, so it’s important for me, but it also makes me a little crazy that people get treated the way they do and that they have to hire people like me.

One of the things that people get upset about is that they have to spend money to medically document their symptoms. And worse than that … I see these long COVID clinics, with doctors who are completely ignorant on long COVID, who surreptitiously write notes in the chart that they think it’s a psychiatric case. I don’t know how familiar you are with this.

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BL: Unfortunately, I’m very familiar.

BC: It’s awful. Not only is it really hard on my clients …  it triggers them to read things that might not be what they said or might not be pleasant. And the number of times that I have seen that and it has sabotaged cases! I have to reconstruct the cases and have the clients contact the clinic (and get them to make corrections).

Mental/nervous limitations exist in all of these (insurance) policies … They can limit someone’s payments to two years if the case is a psychiatric case or mental/nervous limitation with a DSM diagnosis. 

BL: I wanted to ask also — there’s been a lot of research on long COVID at this point, and there was a report this summer from the National Academies specifically in response to a request from the Social Security Administration about long COVID as a disability, in which they found that this disease can result in inability to work, poor quality of life, all that stuff. Have you seen that report, or other research, like the growing body of research on these diseases, have an impact?

BC: I was asked to comment on that (report). Part of the problem with Social Security’s initiatives in this regard is that every Social Security case goes through what they call “sequential evaluation process.” You have to go through five steps to determine whether or not someone’s disabled. And among those steps is (matching people to a “medical listing of impairments,” but the list doesn’t include major symptoms for ME/CFS and similar diseases).

Years ago, there was an ME/CFS ruling called 99-2p. It offered guidelines (for ME/CFS cases that don’t fit the typical Social Security process). After that, I was asked to present to the national association of Social Security judges, there were 500 judges in the audience. And I asked, “By show of hands, how many of you are familiar with 99-2p?” Two hands went up.

Despite the guidelines, in practice, (the judges aren’t familiar with these diseases). Until there is a time when we can come up with a firm diagnostic criteria for long COVID, and we can say, “This is what you have to document for this illness.” … And it can’t just be a positive COVID test because many people got sick before testing was prevalent or they got sick after people stopped documenting that they were positive.

The other problem for long COVID cases is it’s not like cancer or a broken leg or herniated disc or something that people are accustomed to. Those people are not told they’re crazy. Those people are not told they’re imagining it. Those people are not told, “Well, we just don’t buy it.” This is what happens with (long COVID) and ME/CFS. The psych component that they try to pigeonhole these cases into is really a master stroke by the insurance industry that spends billions of dollars trying to persuade people that anyone who files for these benefits is a crook or fraud.

BL: It’s infuriating, especially when you see how deeply people’s quality of life is impacted by these diseases.

BC: Yes, every part of their life is impacted.

BL: I see what you’re saying about needing diagnostic criteria. In this time where we don’t have that yet, what would you want to see the Social Security Administration or other government agencies do to make it easier for all these people who are applying for benefits with long COVID and ME/CFS?

BC: They should (reevaluate) the sequential evaluation process, which has been there forever, and look at medically determinable impairment in the context of long COVID and ME/CFS. These diseases can be documented by things like neuropsych testing.

I’ll quickly go through the five-step sequential evaluation process. The first step is, “Is the person engaged in substantial gainful activity?” That is something you can do predictably, something that will last at least 12 months, and something that leads to gainful work, where you get paid and you can report for a job either part-time or full-time. In long COVID cases … you have to document that this person is not engaged in substantial gainful activity because they don’t know tomorrow if they’re going to be able to get up and get out of bed and take a shower, never mind report for work.

If you satisfy step one, they go to step two. There, they ask, “Do you have the ability, in light of your disability, to perform basic work-related activity?” Sitting, standing, reaching, pushing, pulling, reading, concentrating, things of that nature. And, “Does the disability negatively impact your ability to do these things?” (You need medical evidence, which can come from) a physician’s evaluation from a long COVID clinic, for example.

‘Medical documentation of limitations is crucial. I can’t emphasize that enough.’

Barbara Comerford

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If you have that, you go to step three, which is where that horrible “medically determinable impairment” crap comes in. There isn’t (a specific listing) yet for long COVID, although they’re talking about it. Frankly, we’re still waiting for them to do one for ME/CFS, so I’m not holding my breath. That’s the only step in the process where, if they don’t satisfy it, you can still move on to the next step.

The fourth step is, “Is this person capable of performing the work that they performed for the last five years?” Until June of this year, it was the last 15 years … So we go through each job they had, all their symptoms and limitations and why they can’t do (the job anymore). If we document successfully that they can’t perform their past relevant work for the last five years as a result of their disability, we can then go to step five.

Step five, the burden shifts to the Social Security Administration. Social Security has to document that, in light of a person’s age, education and work experience, that there is no work in the national economy that they could perform. (To do this), Social Security has a big graph called the “medical vocational guidelines.” And essentially, the younger you are, the more skills you have, the more education you have, and the more skills that are transferable, generally you are found not disabled. But the graph is not supposed to be used for cases that involve what we call non-exertional and exertional complaints together. Pain, fatigue, things of that nature are all part of the non-exertional limitation.

That is how we lift ME/CFS and long COVID cases out of that graph. Despite the fact that many of our clients are very young, many of them are highly educated, many of them have developed skills that are not only transferable, but are also in high demand in the national economy — (we say that) because they can’t predictably perform sustained work of any kind, the grid should not be used to find them not disabled. But with all of this, every one of these cases, medical documentation of limitations is crucial. I can’t emphasize that enough.

BL: I know a lot of people in the long COVID community, they’ve already sent in their applications, and then it gets denied, and then they have to appeal. What is that process like, and how would you suggest people go about finding someone like you?

BC: It’s really important to do some research. You want to know if the doctor or attorney you’re dealing with has experience in these cases … I do (webinars and one-on-one education) for lawyers all the time because I’d rather them hear what has to be done and understand what happens if they don’t do it.

If I’m giving people advice on appeals … If it’s coming from a United States employer, you’re going to be governed by ERISA. That’s important because people might file a claim without knowing the exact company policy. Despite the fact that federal regulations require employers to give that information to employees, when someone gets sick and files a (short-term) disability claim, they are immediately cut off from the employee benefits portal (that has all the exact policy information). So then I’ve got to write a letter to the employers and fight to get that information.

You can’t even get discovery in these cases … Sometimes they will award benefits, and then six months in they’ll say, “We no longer believe you’re disabled.” Under ERISA, (employers and insurance companies) get all the advantages.

BL: It seems like people should know, if you’re filing against an employer, to save that policy information before you lose access to it. 

BC: When you get the notice of a denial, you can request a complete copy of the administrative record. You are entitled to see everything that the insurance company had on the case, and under federal regulations, they have 30 days to produce it.

And then you have 180 days to appeal that (denial). People say that’s a long time. It’s really not. Because you’ve got to go through thousands of pages of documents. You’ve got to document where they abuse their discretion. It’s not enough to have medical evidence … (The standard you have to push back on is that) the insurance company or the employer has a “reason” to deny the claim.

The lawyer’s job or the claimant’s job is to show all the examples they found in the administrative record that show (mistakes or poor judgment on the part of the insurance company or employer) … Sometimes, you will see reports of experts that they’ve retained to review the case, and the expert will say, “I think it’s a payable claim.” And then the next thing you find is them looking for another doctor who’s a little more receptive to their suggestions. If we see they’ve ignored the opinion of one of their experts, that’s an example of abuse of discretion and arbitrary, capricious conduct. Cherry-picking the evidence is another thing you often see in these cases.

BL: So it’s not just sending your own medical records, you have to show that the company has messed up.

BC: The insurance company or the employer, whoever is paying, you have to show that they abused their discretion.

BL: Is there anything else, any other advice or resources you would give people?

BC: This is really important. If it’s an ERISA case and they do not get that appeal in within 180 days, they’re foreclosed from pursuing it any further … (It’s a big mistake) if you blow those time deadlines.

This article was originally published by The Sick Times, a nonprofit newsroom that chronicles the long COVID crisis.