stethoscope and pen on chart

Meet Alison Sbrana, a 27-year-old moderator for the support group Body Politic and former care coordinator living in Colorado. Sbrana has myalgic encephalomyelitis/chronic fatigue syndrome, a chronic, disabling condition that often afflicts people after an acute viral infection. Last week, we talked to her via video conference about navigating Covid-19 and applying for disability. Our conversation has been edited for length and clarity.

Can you give us a big-picture view of applying for disability in the United States?

It’s really important to understand that there’s a difference between private disability — both short and long-term private disability — and Social Security disability. And then within Social Security disability, there are divisions within that.

Not everyone has access to all of these different benefits. For example, you only have access to private disability plans if that’s something you opted in for with your employer or if you bought it privately.

When it comes to Social Security, there’s Supplemental Security Income and Social Security Disability Insurance and not all people qualify for S.S.D.I., and so on.

We keep hearing that people who have been diagnosed with Covid are having a hard time getting disability.

Yes. I think it’s really important to understand that the only disability rejections we’ve seen so far are for short-term disability. That’s because when you apply for long-term disability, there’s a waiting period and it takes longer to process the applications. So it’s literally impossible for us to have seen many long-term disability rejections or approvals for Covid patients yet.

But it’s important to note that these short-term denials are very concerning for the post-Covid populations. We know from other post-viral fatigue syndromes that that initial period of rest is crucial to their long-term abilities. If they are not getting approved for short-term disability now – so they have enough money to pay rent, get groceries, go to the doctor – they are forcing themselves to push through and work so that they don’t become homeless and keep their employers’ insurance so they still have access to their doctors.

It’s like a terrible, ironic twist that forcing them to push through because they don’t get short-term disability could in turn cause them to become sicker and require long-term disability in the future, because they’re pushing through during this acute period. It could then lead to a more serious post-viral fatigue syndrome.

What else should someone applying for disability know right off the bat?

It’s really important to understand that your individual doctor is not the person who decides your case. It’s the people who are reviewing your case that are going to approve it or reject it. I mean, of course your doctor could support you and say, yeah, I think you should do this, or they could disagree and not say anything. Either way it doesn’t matter.

In my experience, the disability insurance system is not intended to work properly. Often insurers deny all the first claims that come in. If you don’t fit a specific set of criteria or don’t have ample documentation or even if providers didn’t collect ample documentation on your behalf, they’re just going to outright deny.

The specific stories I’ve seen have been basically the same. People had seen lots of doctors and were clearly very ill. They applied for disability and they were just denied outright their first time. And it seems to make no sense because their doctor supported them, they had the documentation. They should have been approved and they were not. I’ve lost count of the number of times I’ve seen that.

We’ve heard that some people who tried to get the right documentation from their doctors only to find that the doctors refused to provide it. Is this common?

Doctors are often scared to fill out disability paperwork. Many of them, even really great doctors, have flat out policies that they will not sign any disability paperwork. It may be on their website or it will be part of the intake paperwork that you sign when you become a patient with them. There’s nothing we can do about it on an individual basis. Of course, we need policy change on a larger basis.

And many doctors have the misconception that whether or not a patient gets disability is up to them. It’s not up to them. The documentation that we submit of our charts that they’ve documented can help build our case, but it is not up to them.

So sure your doctor doesn’t decide your case, but if you don’t have medical paperwork, then you can’t file a disability claim, right? What can patients do to help their cases?

I have never personally gone through the application process for short-term disability so I don’t know how it’s different from my Social Security process, but I collected all my records myself then shipped them all to Social Security.

I told my doctor I was applying for disability, and she was like, great, I’m glad you’re doing that but I’m not going to sign any paperwork. And I was like, cool. I’m already collecting all my documentation anyway. From my knowledge, a doctor’s signature is not a requirement.

It sounds like some of the long-haulers are unable to work and may be unable to work for a really long time. So what can they be doing about disability? What should they be doing?

I think they need to start assembling their cases for a long-term disability claim, with one caveat:

They need to check their eligibility for Social Security first to see which type they qualify for. They need to understand what the options are here. And if they can qualify for long-term private disability, then great, that’s an added bonus. But your private disability insurer will still likely force you to apply for Social Security.

To start building their cases they need to collect every piece of documentation they can. Make a list of all of their providers, all of their visits and all of the tests they have done: every single lab test, every single visit date, with the who and the why. Part of that is they need to be seeing providers regularly to create that paper trail, because a good paper trail is what helps get you approved. It’s really critical.

What are some obstacles people might run into when building their paper trail?

If you’re seeing a doctor only sporadically, maybe because you have an issue accessing health care for any number of reasons, you need to address that health care barrier. Maybe you are losing your private insurance and you need to enroll in Medicaid or something so that you can start seeing medical providers regularly. It does not have to be a doctor. It might be physical therapists, occupational therapists, counselors, whoever, but I would highly encourage regular appointments so that you have a paper trail. It’s still going to be an uphill battle, but that’s what I would do.

Are there resources that people should know about if they’re looking for disability? I know Body Politic has given a lot of advice. What else should people read?

A really good resource for long-term Covid patients applying for disability is online reading by the ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) patient community, in particular the site How to Get On.

Long Covid is not necessarily ME/CFS: There may be some overlap and there may not be. But people can learn from the ME/CFS community how to navigate disability claims when it’s really difficult to prove your illness. And that’s what How to Get On is about.

What else can people be doing to get help applying for disability? 

They should meet with local disability advocates and their local independent living centers, which are government-funded. Those people can refer them to local resources.

Because disability is so fragmented – so much seems to depend on your employer’s policy, state regulations – is there any central resource people should know about? Where people could go and see what this or that company offers?

Not that I’m aware of. That’s why I encourage people to go to their local disability advocates or independent living center because it does vary so much state by state, location by location.

We periodically see people saying you should go find a social worker to help you navigate these things. How would you go about finding a social worker?

In the U.S. you have a couple of options but it can vary by location. If you’re lucky, your primary care clinic might have a social worker or case manager on board.

I’m in Colorado, and with the Affordable Care Act expansion we adopted a program where if you are a Medicaid member, you are assigned a care coordinator through what’s called the Accountable Care Collaborative. For example, patients get referred to me up here in Larimer County, if they have Medicaid, that’s the first thing I always say: you need to call the A.C.C. and ask for a care coordinator. But that doesn’t exist everywhere. So I usually say start with your primary care practice, see if they have a social worker or case manager.

You should also see if your health insurance has a social worker or case manager. Sometimes people are leery to do that because they’re worried that the case manager from private insurance is going to try to maybe discourage them from seeking services. But I’ve never actually heard of that happening.

So we’ve talked a little bit about long-term disability – in general, there are two kinds, the kind that comes from your employer and then the kind that comes through the Social Security Administration. 

Yes, when you’re talking about long-term disability benefits, there are generally two umbrellas, private and Social Security. While some states do supplement Social Security, there are still really only two different programs with very different rules. It’s really important to understand which one you qualify for before you start applying.

S.S.D.I. stands for Social Security Disability Insurance and eligibility for this is extremely limited. In order to even apply for S.S.D.I., you have to have enough work credits based on your age. People who haven’t worked outside the home much or people who became disabled gradually might not have enough work credits from those years that they were working less than part-time. And there’s still a good chance you won’t get approved your first time applying.

Once you do get approved, your benefit amount is based on your previous income.

What about S.S.I.?

S.S.I. stands for Supplemental Security Income – not insurance. In order to apply for S.S.I., your income has to be so low that you need that supplemental income, and then you have to demonstrate disability. If you get approved, your benefit is a flat amount every month.

But unlike S.S.D.I. if your spouse is employed, or if you earn more than a small amount of money, that could reduce your benefit. With S.S.D.I. you can earn a little more, you can be married and still keep your benefits.

Why should people with private long-term disability still apply for Social Security?

In my experience, it’s extremely difficult to get private disability insurers to pay out, and in the end your private insurer will force you to apply for Social Security because they want to pay you less.

Those are for-profit companies and they do not want to pay. If they approve your case, they’re on the hook to pay for a long time. That’s expensive for them. I have heard horror stories about the lengths insurers go to deny people and to try to prove that they are not sick.

I always say if you think that having a long-term disability policy through your work protects you, don’t. They want Social Security to come in and pay you as much as they’ll pay you, and then they’ll just pay you whatever is left over.

Just throwing some numbers around, let’s say you’re supposed to get $1,500 a month through your private disability. They want Social Security to come in and pay you, say $1,000 a month if you qualify for S.S.D.I. Then they’ll pay you that extra $500 because that saves them $1,000 a month for as long as you’re sick.

It sounds great to have these private disability plans, but in actuality, the way it plays out, the tactics the private companies use tried to deny them are so dehumanizing.  People who have already lost their ability to work and function have already experienced enough trauma, and then what the long-term disability companies put them through is often more traumatizing than anything else that they’ve experienced. And then they’re still forced to go through the whole process with Social Security anyway.

And I encourage folks to seek out their local independent living centers to help them navigate these kinds of things.

We hear quite often that everyone gets turned down the first time they apply for Social Security disability. Should people assume that they’ll get turned down the first time?

It is possible to get approved the first time but it’s just more likely to get turned down. You don’t want patients thinking, oh, it’s just going to be a few months and then my disability will start. You want them to be prepared for that long fight, which is why we often tell them to be prepared to get denied the first time.

Obviously do everything in your power to build your case to avoid that. But do not be discouraged if you get denied the first time. You can either appeal or apply again.

What about people who collected unemployment during the acute phase back in the spring? Will they have a problem applying for disability benefits – given that by getting unemployment you must be “willing and able” to work?

I briefly talked with a disability advocate here in Colorado, who is really knowledgeable. On paper, disability programs and unemployment are at odds because in the paperwork for disability, you have to say you’re unable to work for substantial or gainful employment, and then in order to collect unemployment, you have to say you’re willing and able to work.

But as far as she knows, in almost every state, there’s nothing that prevents people from collecting both. That’s not to say that Social Security might not come after you. Maybe when they do a review or something people could get kicked off later – I have no idea how this is going to play out in the future.

Wisconsin already hit this obstacle. They had written into their state legislature that you could not collect unemployment while being on disability. And so there were people in Wisconsin who are on S.S.D.I. and working legally, and then they lost their jobs due to Covid. They tried to collect unemployment, and they couldn’t.

What happened is they got enough attention, and they changed the rule, which is great for those people with disabilities and hopefully it sets a precedent.

But I’m concerned that where we’re going to see this play out is in the applications that long-term Covid folks are going to submit. Are they going to try to use that as evidence against them? I don’t know. And nobody can tell me. I don’t think we’re going to know until it happens.

For Social Security, the definition of disability is that it is expected to last 12 months or more. How do people prove that with a novel virus?

I’ve thought about this one a lot. In my opinion, these long-term Covid folks should follow the wisdom that the ME/CFS community has in navigating long-term disability. Sure this is a novel virus, but post-viral fatigue or post-viral syndromes are not a new thing.

I’m not saying that all long-term Covid patients fit into an ME/CFS box or any other previously identified illnesses. What I’m saying is that a post-viral illness is not necessarily a new thing, and so we can look to established illnesses – SARS, MERS and other viruses –  to try to show longevity, but it’s going to be a challenge for sure.

Virginia Jeffries

Virginia Jeffries is a journalist in New York City. Since 2020, she has reported on long...