“Never let a good crisis go to waste.” Winston Churchill
The times they are a-changing. The pandemic has altered the way we work and live, given a huge boost to telemedicine, practically birthed a new research field (post-infectious diseases), underscored the huge threat that viruses still pose, underlined radical holes in medical research and treatment, given enormous exposure to ME/CFS, and on and on.
COVID and long COVID have tested our social support systems, our political systems, our medical testing, treatment, and drug delivery systems and found them mostly wanting. We weren’t even able to deliver enough personal protective gear to our medical providers. Our inability to produce enough vaccines has resulted in contagious variants running amok. Much of the world is still under dire threat. While we were able to produce vaccines in record time, we found out that we weren’t nearly ready to effectively deal with a pandemic.
Now the pandemic is beginning to test another vital part of our social safety net – disability – and exposing the holes in it as well. A superb Time article “How COVID-19 Long Haulers Could Change the U.S. Disability Benefits System” noted that millions of long COVID patients could conceivably apply for disability over the next year or so. That has many worried that an already overburdened system could implode. They’re also pressing for fundamental changes. This is no time to let a good crisis go to waste.
“COVID long haulers represent the largest influx of new entrants to the disability community in modern history. There have been a few key moments in history, and this is one of them, where we have not only the opportunity but the urgent imperative, to wake up and realize which policies are incredibly long overdue for change.” Rebecca Vallas, a senior fellow at The Century Foundation and a former disability lawyer (Time Interview).
One of the issues is time. As your disability case winds through the system your finances are likely draining. Some people have lost their homes waiting for a judgment. If you’re going the private route, insurance companies can add requests that can delay the process considerably. They know time is in their favor – that some people can’t stomach the long process and just give up, and that others may accept settlements they wouldn’t have otherwise.
The COVID-19 pandemic is giving us yet another opportunity to, as Winston Churchill – that most quotable of major figures – noted “not let a good crisis go to waste”.
“It’s wild – the amount of work somebody with disabilities needs to put into the application for disability.” A long-COVID disability claimant.
If you’re contemplating trying to get disability, just the thought of having to go through the process: finding a doctor and lawyer to support you, getting the tests done, having your veracity possibly questioned by doctors/lawyers, dealing with the seemingly almost inevitable initial rejection letter, dealing with the pressure and uncertainty – all the while suffering from cognitive problems, fatigue, and post-exertional problems… That’s more than a little daunting.
Stacy Cloyd, director of policy and administrative advocacy at the National Organization of Social Security Claimants’ Representatives told Time that this “is a tremendously difficult time for claimants”, and that the process puts a “tremendous amount of stress on disability claimants and on their families.”
We don’t know how the already resource-strapped Social Security Administration in the U.S. will deal with possibly millions of new disability applicants. If you have private disability insurance, we can guess that the insurance companies – already notably hostile to ME/CFS and fibromyalgia claims – are going to deal with long-COVID disability claims in a similar fashion.
If you’ve gotten to the place where you need disability, this is one process, though, where you don’t want to make a mistake. Unfortunately, it’s an easy place to mess up.
You’re basically a babe walking into a minefield. You may have the naïve and mistaken impression that because you’re sick you’re entitled to disability support. Unfortunately, that’s just hilarious.
It’s probably better to think of the disability application process as a high stakes battle – that you want to be as prepared for as possible. If you have private insurance, your insurance company has its bottom line and its shareholders to protect – and protect them they will. Lose this battle and they could be on the hook for decades of payouts. You, on the other hand, have your future financial security to worry about. You don’t want to bring a knife to this gunfight.
This is a fight that the insurance companies, in particular, have been preparing for – for years. They know the arguments that work. They know how to twist innocent statements into damming innuendos. They know how to use small mistakes in your doctors’ reports to torpedo your claims. They know how to outlast you.
Fortunately, not all is lost. The ME/CFS community, in particular, has been battling the disability system for decades. Advocates have won important concessions from the Social Security Administration. ME/CFS research studies have provided important ballast for disability seekers.
Many resources have been produced to support disability seekers, and resources have been developed specifically for long-COVID patients. Some law firms actually specialize in these diseases.
Documenting your case correctly, finding a good doctor to help you, getting the right tests done, and getting good legal support will help your case immeasurably.
Plus, ME/CFS and long COVID have an ace up their sleeve. Getting disability means proving that one lacks the functional capacity needed to engage in “substantial, gainful activity”. That might seem impossible given that we still don’t know what causes either long COVID or ME/CFS, but the truth is the disability system doesn’t give a hoot about what’s causing a disease. It will thumb its nose at the vast majority of tests you’ve spent so much money on. All it cares about is how functional you are, and luckily for us, a test has been developed that has the potential to knock that question out of the park.
It’s called the two-day cardiopulmonary exercise test (CPET). If it shows that exercising one day impairs your ability to generate energy the next day, you’ve got a pretty ironclad data point that indicates that your functionality is significantly impaired.
Long haulers might think of the two-day CPET as a gift from the ME/CFS community. This test was developed by exercise physiologists at the Workwell Foundation who’ve been associated with the ME/CFS community for decades. Years of effort have gone into validating the test in the research literature. Nobody, though, was using it to assess functionality in disability evaluations before Workwell. Now it’s probably the key element in many ME/CFS patients’ disability evaluations.
Ch, Ch, Changes?
Time will tell if long COVID will prompt changes in how the disability process – at least at the federal end – is run but long COVID is being addressed. An April, Senate Finance Committee hearing on the Social Security Administration’s (SSA) response during the pandemic concluded that a simpler application process is needed. Time reported that Democratic Sen. Sherrod Brown of Ohio is working on legislation that would make it easier for people to apply.
The Department of Health and Human Services and Justice Department recently produced a new guidance indicating the long COVID patients are eligible for disability under the Americans for Disability Act (ADA) and the Affordable Care Act. Last week President Biden used a commemoration of the ADA to emphasize that fact.
“Many Americans seemingly recovered from the virus still face lingering challenges like breathing problems, brain fog, chronic pain and fatigue… These conditions can sometimes rise to the level of a disability. So we’re bringing agencies together to make sure Americans with long covid, who have a disability, have access to the rights and resources that are due under the disability law, which includes accommodations and services.”
The White House Office of Public Engagement, in conjunction the Departments of Health and Human Services, Education, and Labor, has been doing Zoom calls to review the published guidance, to help people get support and answer questions. The next one is on Monday, August 2nd from 4:00 to 4:45pm EDT. (The Press is not included). Register for the Webinar here.
Next Steps for Disability Seekers
If you’re attempting to get disability, or if think you might have to in the future, resources are available. Note that even if you don’t know that you will have to attempt to get disability, there are things you can do now to protect yourself if you do have to go that route.
On August 3rd from 11 AM to 12 PM PST, two major figures in the ME/CFS/long-COVID disability world – the Workwell Foundation and Kantor & Kantor – will present a free Continuing Legal Education (CLE) webinar on disability insurance for people with ME/CFS and/or long COVID.
The Workwell Foundation has specialized in exercise testing for disability for people with ME/CFS for decades. Kantor & Kantor is the leading law firm adjudicating disability claims for people with ME/CFS, fibromyalgia and now long COVID in the U.S.
The webinar is for attorneys, and individuals and caregivers with ME/CFS and/or long COVID. It will provide information on the connection between ME/CFS and long COVID, the vital role cardiopulmonary exercise testing (CPET) can play in validating your claim, how the long-COVID disability claims are playing out thus far, an introduction to the ERISA Act which underlies disability claims, and the process claimants can expect to go through.
Disability Resources for long COVID and ME/CFS
“As someone with brain fog, if I didn’t have the connection with a social worker and the case manager to help me, I wouldn’t be able to complete the forms,” Long-COVID disability applicant
Many resources are available for ME/CFS and long COVID disability applicants.
- The Longhaulers-Legal-Resource-Center from Kantor and Kantor includes tips, articles, a guidebook and a recording of a webinar where the panel answered more than 100 questions about disability insurance
- 10 Tips for COVID-19 Long-Haulers Seeking Disability Benefits – Health Rising
- Federal Guidance for people with long COVID and Disability.
- Disability Resources for Chronic Fatigue Syndrome, Fibromyalgia and now Long Covid
- Cort Johnson’s four-part series on Disability and Chronic Fatigue Syndrome (ME/CFS): Disability I/ Getting the Diagnosis / Documenting Your Limitations /Resources
- From Scott Davis: Five Crucial Steps to Winning your Chronic Fatigue Syndrome (CFS) Disability Case (1999)/ Winning Your Disability Case with the Help of Co-Workers, Family Members and Friends [Affadavits are Important] (2001)
- The Disability Defenders: The Workwell Foundation, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
- CPET Tests – The Gold Standard for Getting Disability
- How to Navigate Disability Insurance – webinar‘
- COVID-19 and Disability Claims and Appeals – webinar
- Administration for Community Living’s Disability and Assistance Line (DIAL) – Federal agency that provides services for those living with or applying for disability. To use DIAL, call 888-677-1199 Monday-Friday from 9 a.m. to 8 p.m. (Eastern) or email DIAL@n4a.org.