Social Security Disability and SSI for Post-COVID Syndrome

Long COVID, or long-haul COVID, is a term to describe a syndrome where symptoms continue months after a coronavirus infection. Researchers think that 10% to 30% of patients who had COVID infections might suffer from long COVID, or "post-COVID syndrome," whether their initial illness was serious or not. Some researchers define chronic COVID-19 as extending beyond 12 weeks, but the symptoms may in fact last many months.

Long COVID Symptoms

Symptoms can vary widely, but many "long-haulers" report shortness of breath, extreme fatigue, fast heart rate, fainting or dizziness on standing, or neurocognitive difficulties (often called "brain fog"). Some long-haulers are unable to work because of the severity of their symptoms and limitations and have applied for disability benefits. Social Security disability insurance, however, requires that a claimant be unable to work for 12 months, and it's unclear how long post-COVID symptoms may last, given that not many people contracted COVID-19 more than 12 months ago. In addition, there have been anecdotal reports of people recovering from post-acute COVID syndrome (PACS) after they get COVID vaccinations. (The acronym PASC, for post-acute sequelae of COVID-19, is also being used to refer to this syndrome.)

Many who contracted COVID-19 early in the pandemic, before widespread testing was available, don't have evidence of a positive COVID test, doctor visit, or hospitalization. This poses a difficulty for some, since Social Security will want evidence of a past coronavirus infection. For certain lingering symptoms, but not all, there are diagnostic tests that can indicate past infection. Social Security has provided some guidance on this point (and the CDC has recently released guidelines saying that lab tests are not required to establish post-COVID syndrome).

Guidance From Social Security on Post-COVID Syndrome

Social Security has released an emergency message giving its employees some guidance on how to handle applications that allege "post-COVID conditions." This message is not a medical "listing" or ruling, and doesn't discuss in depth how the agency will determine whether someone unable to work due to post-COVID syndrome is eligible for benefits. For the most part, the agency says it will use its current listings and rules to analyze the condition, but it did comment on a few issues.

Before it will consider long COVID as a disabling impairment, Social Security must be able to establish it as a "medically determinable impairment," or MDI. An MDI must be established by "medical signs" and laboratory findings rather than a patient's subjective complaints alone. To find an MDI, Social Security needs to see one of the following:

• a positive viral test for SAR-CoV-2 (not an antibody test)
• a diagnostic test consistent with COVID (for example, a chest x-ray), or
• a diagnosis of COVID with signs consistent with COVID (for example, fever and cough).

If the evidence indicated a false positive viral test, Social Security won't count it.

The COVID-related impairment must prevent the claimant from working for 12 months, but Social Security will consider more than just long COVID symptoms in considering the duration. If COVID causes a new MDI, such as kidney disease, or makes an existing MDI worse, such as COPD, that would help meet the 12-month requirement. If it's unclear whether or when the long COVID symptoms will resolve, Social Security could defer a decision on a claim for several months.

In the coming months, Social Security may release a "policy interpretation ruling" as the CDC learns more about post-COVID syndrome, but it's unlikely to create a listing for the condition. For example, Social Security released guidance on chronic fatigue syndrome in its ruling SSR 14-1p in 2014, though it still has not added a listing for the condition. In some cases, however, SSA will create a listing for a syndrome after studying it in depth; for example, after years of relying on a ruling for guidance, Social Security created a listing for post-polio syndrome, a post-viral syndrome to which many studying long-term COVID have drawn parallels.

Disability Determination for Post-COVID Syndrome

After confirming that you're not doing a significant amount of work and have a medically determinable impairment, Social Security will next determine if your condition is so severe that it is of "listing level" severity. While there is no listing for post-COVID syndrome, Social Security might find that your symptoms make you just as disabled as someone who meets a listing. The agency will compare your symptoms and limitations to the criteria of any relevant medical listings to see if your limitations rise to the same level of severity. For example, if your COVID illness caused lung damage and you developed a chronic respiratory disorder, but you don't have the exact lung function test results you need to meet the listing for respiratory disorders, Social Security could find that your condition "equals" the listing.

If you don't meet or equal a listing, Social Security will consider whether you have any functional limitations that were caused by COVID or by an impairment that was worsened by COVID. The agency will consider your symptoms as well as your stamina and endurance when considering whether you can perform sustained work activity. If you can't, the agency can grant you benefits after assessing your residual functional capacity (see our article on how your RFC is determined for how Social Security makes these decisions).

Let's take a look at how Social Security might assess some common long COVID symptoms.

Physical symptoms. For post-COVID syndrome, there are various listings that the agency could look at, depending on the claimant's symptoms. Many long COVID sufferers have physical symptoms that fall into five categories:

• fatigue and endurance issues, very similar to what happens in myalgic encephalomyelitis (ME)—more commonly known as chronic fatigue syndrome (CFS). ME/CFS can be triggered by viral infections. (See our article on CFS for how the SSA determines eligibility.) Many people with post-COVID symptoms also report having insomnia, which can lead to fatigue.
• malfunctioning of the autonomic nervous system, as in postural orthostatic tachycardia syndrome (POTS). POTS can cause fainting and dizziness after standing or sitting up as well as tachycardia, a fast heartbeat. (See our article on POTS for how the SSA determines eligibility.)
• long-term respiratory difficulties, similar to those with scar tissue from pneumonia or acute respiratory distress syndrome (ARDS). (See our articles on pneumonia, COPD, and sleep apnea for how the SSA determines eligibility.)
• cardiovascular problems from lasting damage to the heart muscle (cardiomyopathy), potentially causing congestive heart failure (CHF), or myocarditis leading to arrhythmias or chronic pulmonary hypertension. (See our articles on CHF and arrhythmias for how the SSA determines eligibility.)
• musculoskeletal aches and pains, such as muscle or joint pain caused by myositis (muscle inflammation), myofascial pain (pain and tenderness in muscle fascia), or "reactive" arthritis. (See our article on rheumatoid arthritis for more information.)

Cognitive and mental symptoms. The majority of COVID long-haulers report problems with memory and brain fog—difficulty thinking and concentrating—sometimes in addition to headaches or loss of the sense of smell or taste. Doctors think at least some of these cases are caused by encephalitis (inflammation of the brain due to viral infection). The cognitive problems people experience are similar to those that people have reported after encephalitis stemming from Lyme disease, another illness with a post-viral syndrome.

Social Security could use the listing for neurocognitive disorders (12.02) to evaluate long-COVID sufferers who are experiencing cognitive difficulties. Those who have both physical and mental problems could try to "equal" the listing for traumatic brain injuries.

Long-haulers who were ventilated or hospitalized with severe COVID may suffer from what's known as post-intensive care syndrome (PICS). Patients with PICS often suffer from long-term muscle weakness, fatigue, cognitive deficits, and/or mental health issues like anxiety or depression. Sometimes these conditions are severe enough to qualify for disability.

Next Steps

You'll need to show Social Security three main things to get disability benefits for long COVID:

• a diagnosis, with signs of your illness and a record of your symptoms
• evidence of your limitations and how they affect your ability to work, and
• documentation that your inability to work has lasted, or will likely last, 12 months.

Keep going to your doctor or specialists to document your symptoms and how your limitations keep you from leading a normal life or being able to work. Get a diagnosis, not just of post-COVID syndrome, but of the underlying mechanisms that are making you sick. For instance, if you're having respiratory issues, get referred to a pulmonologist who can give you lung function tests. If you're fainting after prolonged sitting or standing, or you have chest pain, get a referral to a cardiologist. If you are exhausted after the least bit of activity (known as "post-exertional malaise"), you should probably see a rheumatologist. If you're having cognitive issues, be sure to get a neurological evaluation before applying for disability benefits.

It's difficult to figure out the tests you need or the specialists you should see without being a doctor yourself, so your first step should be to see your primary care doctor, who can give you referrals to the appropriate specialists depending on your symptoms.

In the meantime, if you have a short-term disability policy through your work, consider filing for short-term disability insurance benefits; if not, check if your state is one of the few that has a state temporary disability program.

Getting disability benefits for long-haul COVID is not going to be easy. Those with existing severe impairments that were made worse by COVID probably have the best chance of getting benefits. Others might need a disability lawyer to propose a theory to the Social Security Administration as to how and why their condition equals a specific listing, or why and how their RFC has been significantly reduced by long COVID limitations. To succeed in this, you'll also need to ask your doctor(s) to provide supporting medical evidence to back up the theory.

_{Updated November 17, 2021}