As COVID-19 cases continue rise in the United States, COVID long-haulers and other disability advocates are suggesting people get in-person PCR tests if they test positive with an at-home rapid test. Leaving a medical paper trail of your diagnosis may be important if you need to apply for disability benefits down the line.
If someone tests positive for an at-home rapid test, the Centers for Disease Control and Prevention (CDC) recommends that they get in contact with their healthcare provider about their results and their symptoms. Whether or not an at-home test or documenting symptoms with a healthcare provider is enough to get access to Social Security disability benefits or treatment for long COVID is not straightforward. But in the past, it hasn't always been enough.
In mid-March 2020, Suzanne Zuppello, a New York City-based freelance writer, woke up with a fever and body aches. After she lit a candle, she realized that she had lost her sense of smell as well. Zuppello had a telehealth appointment with her primary care doctor, who diagnosed her with a presumed case of COVID-19. At the time, rapid tests weren't yet widely available.
Three and half weeks later, Zuppello was finally able to get a test for COVID-19, which at that point, she tested negative for. When Zuppello contacted Mount Sinai’s Center for Post-COVID Care, she did not qualify for treatment at this clinic. Zuppello said that she was told that she needed a positive COVID-19 test, and a presumed COVID-19 case diagnosed by a doctor was not enough.
“I did feel really discouraged and also doubting myself a lot and doubting what was happening to me was even like real or legitimate,” Zuppello said. “I think having a proper diagnosis does legitimize what a lot of people are feeling and helps them.”
On April 16, 2021, the Social Security Administration (SSA) released policy guidance for people with long COVID. The first step that people have to take to qualify for benefits involves establishing a medically determinable impairment from COVID-19.
In order to qualify for Social Security disability benefits, you have to prove you have a physical or mental medically determinable impairment that prevents you from working. The SSA defines it as “an impairment that results from anatomical, physiological, or psychological abnormalities, which can be shown by medically acceptable clinical and laboratory diagnostic techniques.”
For people who have or had COVID-19, there are three options to do this:
“All can establish a medically determinable impairment,” Stacy Cloyd, JD, the director of policy and administrative advocacy at the National Organization of Social Security Claimants’ Representatives, told Verywell. “So, that indicates that a PCR test is not the only path towards establishing a medically determinable impairment.”
At-home rapid antigen tests would not establish a medically determinable impairment on its own. It’s questionable whether a self-administered test qualifies as “objective medical evidence,” since it’s not evaluated in a lab.
People living with long COVID may have very different experiences applying for disability benefits because the virus affects people’s bodies in different ways.
“A challenge with cases where COVID-19 is the basis for the disability claim is that COVID-19 presents itself in a lot of different ways that affect people very differently,” Cloyd said.
In order to qualify for Social Security disability benefits, people will also have to demonstrate that their condition has a severe impact on their life and ability to work for at least twelve months. If someone goes into kidney failure and needs a transplant, for example, it may be easier to prove that this issue will impact someone for a longer duration of time.
While brain fog can greatly impact someone’s quality of life, it is harder to prove that it will affect a person for at least a year and prevent them from working.
People who have almost no symptoms during COVID-19 can still have their quality of life impacted due to long COVID-19. You can learn more about applying for disability benefits here.
Even for people who meet the criteria for disability benefits—for long COVID or for another health condition—the process of both applying for and receiving these benefits can be very complicated.
Cloyd suggests that people looking to apply for disability benefits work with a lawyer who can help them navigate the process. Most lawyers will only get a fee if the disability claim is successful.
“Having somebody who understands the process and has handled disability claims before can be very useful in terms of filling out paperwork, submitting evidence, and just knowing what to expect,” Cloyd said.
If people’s claims are rejected by the SSA, whether or not they are working with a lawyer, Cloyd recommends that they prepare for a potential appeal by reading and understanding why their initial claim was rejected.
“I would also encourage people to read the notices that they receive closely so that they understand what’s going on in their cases and any deadlines that are coming up for them,” Cloyd said.
COVID-19 is a mass-disabling event, but issues with Social Security disability benefits and lack of support from the medical system and their communities is not new to chronically ill and disabled people.
“Problems that people who are new to the system are identifying are actually problems that disabled people identified a very long time ago,” Kathy Flaherty, JD, the executive director at the Connecticut Legal Rights Project, told Verywell.
Getting denied for Social Security disability benefits is not uncommon. For example, in 2019, less than 30% of applicants were awarded disability benefits. Flaherty said it is not uncommon for people to not realize issues with benefits programs until they need them, either due to disability, poverty, or both.
People with conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which long COVID has been compared to, also face rejections. Symptoms associated with these conditions, like profound exhaustion and extremely poor stamina, are harder to objectively capture in data. Policy guidelines for applying for Social Security benefits for people with ME/CFS were only released in 2014.
Flaherty herself contracted COVID-19 in March 2020 and was unable to get tested. She found solace in disability advocates like Imani Barbarin on Twitter who were welcoming toward newly disabled people, explaining barriers that disabled people face, and emphasizing the importance of rest.
“It helped me because I know I would have pushed myself to go back to work right away,” Flaherty said.
Some people with long COVID have struggled to get care without a PCR test, even if their symptoms have been medically documented.
In July 2020, Connecticut Governor Ned Lamont issued an executive order about workers’ compensation for people with COVID-19, that required that the infection be “confirmed by a positive laboratory diagnostic test within three weeks of the date of injury or diagnosed and documented within three weeks.”
“The governor issued an executive order that if you got sick at a certain point in the pandemic, you were presumed to have it, but you needed to have a PCR test,” Flaherty said. “I couldn’t get one.”
Brittany, who lives near Boston and works in higher education, tested negative for COVID-19 in March 2020 after seeing a doctor. Because her symptoms lined up with COVID-19, the doctor wrote a note for her employers saying “that regardless of the test result, it was a presumptive case.” For a variety of reasons, Brittany chose to not apply for disability benefits.
While Brittany is now working remotely, she is expected to be back in the office around January 14. Her employers are expecting her to come back into the office because she does not meet their standards for having a diagnosis that would allow her to continue to work remotely.
“They are suggesting now that we double mask at all times, and I have been wearing a surgical mask because of the breathing issues that I have,” Brittany said. “An N95 [mask] makes me feel like I’m suffocating, and so I’m deeply, deeply apprehensive about going in and making myself vulnerable.”
Brittany has also tried to get treatment for persisting COVID-19 symptoms. When she coughed up blood for the first time, she contacted her general practitioner for help.
“She looked at my charts, looked at the test result, and said, ‘Well, you tested negative for COVID, so I think it’s allergies,’ and so I switched general practitioners,” Brittany said. “The next one kind of laughed off a lot of what I was telling her.”
*In order to respect their privacy, Brittany's last name has been omitted.
The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.