Navigating the Choppy Waters of Long Covid Disability

UPDATE (February 2023.) Working with a law firm, I have been notified that I have been approved for Social Security Disability. My "Notice of Award" has not arrived but I received notice from my disability attorney and confirmed with my local Social Security office. Overall, this took 15 months with one rejection and WITHOUT a hearing--I hear that's quite uncommon. Not uncommon considering the breadth of my disabilities. 

Disclaimer: This is my experience and opinion; NOT professional employment or disability advise. Consult with your spouse, partner, family, and attorney before navigating these "choppy waters."

If you've read any of my blog posts, you know I draw quotes and analogies from film quite often. When talking or writing about Long Covid Disability, I'd quote Chief Brody (from Jaws, "You're gonna need a bigger boat" to navigate these waters.

It's hard to put my Long Covid life into perspective. It's not appropriate or fitting to use the word "fortunate" with the "cards in my hand," (in my case, an inside straight missing the inside card) but sometimes I do feel "more fortunate" than others when it comes to my healing journey and treatment for #LongCovid. 

I feel fortunate in the sense that (while under review AGAIN,) I'm on private insurance disability. A recent article from NPR estimates that there are 4M people out of work in the United States due to Long Covid. I think that number may be "light" in that most estimates vary between 20-30% (some lower and higher,) of those that get Covid will develop into Long Covid. Even if you called it 20%, that's 18.6M people with Long Covid in the United States (based on the CDC number of 93M people who've contracted Covid in the U.S.)

What's my point? That's a ton of people either out of work or people working through illness--like I did for awhile before I went on disability.

My non-scientific study based on feedback from Twitter and Instagram (totally not scientific) is that the vast majority of those struggling with work and Long Covid didn't think to file for FMLA (Family Medical Leave Act) or short-term disability (or long) while still employed. This is NOT legal advise as free legal advise is like buying a discount parachute. My "two cents" of legal advise is to immediately file for FMLA and if warranted, file for short-term disability. FMLA (usually filed with HR or your manager) provides protection against (fundamentally) being fired because you are sick. 

I've lost track of how many people I've heard from with Long Covid that tried to continue working yet management reprimanded or ultimately fired them because they couldn't perform their duties.

I dove into a twitter thread recently on the topic where someone struggling with Long Covid in the workplace said, "who wants to employ someone who may be able to work 5-10 hours a week but can't guarantee it?" To which I replied, "Add to that; can't guarantee what time I show up to work. Likely will call in sick the next day if I overdo the 1.5 hours I work that day and I'm highly prone to mistakes (due to brain fog.) What does brain fog look like? Paying bills twice or forgetting to pay them. Forgetting my kids birthdates, inability to read and retain, forgetting where I'm driving to, and sluggish responses to basic questions.

All that makes me super desirable as a potential employee. #sarcasm 

Add to that, I'll be going in for IV/IG infusions every three weeks for four days a week over the next six months. The first round of treatment landed me in the Emergency Room (future post on IV/IG treatment.)

Depending on your employer's benefit package, you typically have health, dental, 401K, flex spending which we all generally sign up for. Near the bottom of that benefit list is usually a modest life insurance policy and short-term and long-term disability. AGAIN...this is not universal and you should check your current employer benefits with your Human Resources. 

In my case, I initially filed for FMLA then eventually short-term then long-term disability while still employed. For the moment, I have long-term disability payments in place even though I haven't worked for my previous employer for over a year. My policy warrants that since the disability happened while employed, and I "filed" while employed then (in theory) I'd have disability benefits until retirement age.

That all sounds great but it's paying out (at least in my case) at roughly 50% of what I was making so it is quite a "haircut" in income. This explains why we rented out our home and have been living with family for most of 2022 to try and cover that income "gap" and pay for the exorbitantly expensive COBRA Insurance. COBRA is a Federally-supported program that allows you to pay "out-of-pocket" (#understatement) for continuation of health, dental and vision insurance when you're "let go" from an employer. Something most of us thought we'd never need.

Given the 170+ Dr. appointments I've had since getting sick in January '20, continuation of health insurance was not optional for our household, but it ain't cheap. We are paying nearly $1,700 a month for COBRA--combine that with a 50% reduction in income and AGAIN, you can "do the math." My healthcare is "north" of $100,000 and while insurance covers most of this; it doesn't cover all of it.

This brings us to private insurance versus Social Security Disability. Depending on income history, the former would likely pay more than the later but I can't state that as "universal" but would certainly love your comments at the end of this post on your experience. In my case, my disability insurance company is paying for a law firm to apply for Social Security Disability. Why would they do that? Math again.

Any benefits I'd potentially get from Social Security Disability would be deducted from what the insurance company would have to pay so you can see where they'd be motivated to go this route. IF approved (I've already been rejected on my initial application) they would pay in arrears to the time of disability. Don't get too excited. In my case, (if approved,) any "balloon payment for the above would be "clawed back" by the insurance company--again--this is why they're offering the legal service.

One more nuance to this whole SSDI formula is that (as I understood it,) you're also financially motivated to file as this fundamentally stops recording income history. In my case, I was in a lucrative industry as a software sales executive. Social Security continues to record year-to-year income so with drastic "drops" in income for me in the last two years would lower my eventual Social Security benefits (non-SSD) once I go on retirement Social Security.

Let's suppose in the above example, you made $60K a year for 15 years on average. If you'd dropped to zero or even half of that, your annual income average would drop over time as they average in those disability years.(In this example, suppose you didn't work two of those fifteen years, your average income would drop to $56K working the last two years at half pay and $52K without pay those last two years.) Fundamentally that drops your income average THUS lowers eventual Social Security payments.

All of the above is why I continue to push my Senator Hickenlooper for action (sorry this post is U.S. focused, but again would love to hear global nuances on twitter or in comments below) on Social Security Disability reform. Yes, Long Covid now has a diagnosis code and is now recognized as a Disability according to the Americans With Disability Act., but what reform is needed?

1) My initial disability claim was denied suggesting there are other jobs I could fulfill. Based on my twitter dialogue, I'm un-employable. We need a stronger acceptance for Long Covid as a Disability (despite it now being recognized,) in my case it certainly doesn't appear to be recognized as a limitation. Some (sub)diagnosis may qualify on their own such as neuropathy. A good starting point is to have a diagnosis from your doctor or Long Covid clinic such as RTHM for Long Covid. 

From Aetna, Providers should list U09.9 secondary to specific codes for ongoing conditions after a COVID-19 infection, such as shortness of breath (R06.02), fatigue (R53), myalgia (M79.1), multisystem inflammatory syndrome (M35.81), and others, according to new tabular instructions for the code.

I have had help from Mayo Clinic dating back to 2021 for diagnosis and assistance with (private insurance) disability and Social Security. If possible find an "occupational medicine" specialist--they are experts in dealing with employee/employer and disability.  

(UPDATE: Since this original post, the (US) Federal Government does recognize Long Covid as a disability. 

This guidance explains that long COVID can be a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 (Section 504),  and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557).

2) Shorter approval periods. My "no" from Social Security took eight months. According to the Social Security Administration, they reject 67% of claims. Most feedback I've got is that percentage is quite low. For anyone that wasn't able to get private disability insurance benefits while applying and waiting for Social Security, how is someone supposed to pay bills, and keep their homes with this timetable? I have no idea how long my appeal will take, but I understand that many appeals are again denied and IF approved, it's in the third phase which is a hearing.

3) COBRA reform. In my example, I'm paying near $1,700 to continue my medical (dental, and vision) coverage via COBRA. Who can afford that when they potentially go to ZERO income? Whether it's universal health care or reform of the Affordable Care Act (ACA,) something's got to give here. Waaaay too expensive for any household.

4) Social Security benefit reform. In my case, with private insurance I'm getting half of what I was earning. I understand Social Security is potentially less. Suicide rates are climbing with this paradox; losing all your identity via limitations combined with an untenable financial situation is driving depression and some resorting to the unthinkable. Benefits need to be more in line with previous income history.

Overall (as seen in the Capitol Hill briefing, "Understanding and Addressing Long Covid and its Consequences"  to the Oversite Select Committee on Coronavirus Crisis last month) we are clearly still at an educating and informative stage with our government. Dr. Verduzco-Gutierrez was one of the panel presenters and I'd highly recommend following her on Twitter. She gets it. 

Perhaps if they realized this has a potential $16T impact (according to JAMA) they might do something for us. I'll save you the 1:27 minutes, we barely achieved cursory knowledge with our politicians, but I recognize the need for continued awaremess. 

Back to the word, "fortunate." The entire paradox above is exponentially greater within certain racial, or socia-economic demographics. I have disability insurance. I (largely with my wife) and a portion of my brain have been able to navigate this complex process thus far. What about someone without disability insurance or the wherewithal to file for FMLA, engage a lawyer, or get creative around finances to weather this storm? 

I'm not an economist but $16T sounds like a big "hit" on our economy; not to mention the moral obligation to take care of those like me that have been paying into Social Security since I was bussing tables forty years ago.

Income goes to zero + High Cost of COBRA + long process to get anything out of SSD = "You're F'ed!"