New guidance released regarding Long COVID as a Disability

This article provides information about the process of applying for disability and the documentation needed for social security disability and long-term disability.

Updated February 20, 2024

Little attention has been given to the threat Long COVID presents to the healthcare system (including insurances), economy, workforce and community. Similar to any injury or disease, early intervention after infection can reduce the risks of neuro COVID, brain damage or organ damage.

Why does COVID-19 continue to be an issue?

Many are of the opinion that the pandemic is over, but it is more accurate to say that we have learned how to deal with COVID-19 infections. Lockdowns are over, most people have returned to their normal routines, and western science has learned how to deal with the acute life-threatening components of the virus, but it is too early to disregard this virus as a threat. A proportion of people infected have long term issues referred to Long COVID. According to the Journal of the American Medicine Association (JAMA), Long COVID affects at least 12% of those that contract COVID-19.  Other researchers, including the CDC, estimate that 30-50% of people infected with COVID-19 may develop Long COVID, regardless of the severity of the infection.

SARS was declared a threat in 2017 (see link to NIH article in resources listed below). In February 2020 COVID-19 was declared a pandemic. COVID-19 continues to mutate and spread, causing disability and death from primary and secondary health issues the acute viral infection causes. Newer variants are lighter and smaller, meaning they stay suspended in the air and travel farther, making them more contagious. New variants are considered less fatal in the acute phase than the alpha strain, however they carry an increased risk of chronic illness and degenerative problems. Long COVID will be a community health risk for decades to come.

Barriers to diagnosis and treatment

Some post-COVID conditions cannot be detected with the current diagnostic tools. Clinical evaluations and results of routine blood tests, diagnostic imaging, and electrocardiograms may be normal. Many of the symptoms are similar to those reported by people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and other poorly understood chronic illnesses that may occur after other viral infections such as EBV and Lyme Disease. People with these unexplained symptoms may be misunderstood by healthcare providers, which may result in delayed diagnosis and treatment.

Most social security applications are denied due to lack

of:

  • Lack of documented evidence of disability

  • Lack of awareness of Long COVID by providers and patients

  • Lack of diagnostic testing to confirm Long COVID

Qualifying for Social Security Disability

According to JAMA, at least 12% of people have been disabled by the COVID-19 spike protein, regardless of the severity of infection or how they were exposed (virus or vaccine). That number equated to 10.8 million people in the US as of August 1, 2022 based on the 90 million cases of COVID infections on that date. Other researchers estimate the frequency of Long COVID is closer to 30-50%.

Symptomology that lasts or increases at the 6-month mark indicates some level of disability, the benchmark for social security disability (SSD) eligibility. 4 or 5 months of persistent or worsening post COVID sequelae indicates that it is time to consider what is needed to transition to SSD benefits.

The U.S. Department of Health and Human Services and the Department of Justice jointly published a guidance document on “long COVID” as a disability under the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. The guidance, released as we commemorate the 31st anniversary of the ADA, provides additional clarity on how these disability nondiscrimination laws apply to people who may be newly covered under these laws because of the impact of the COVID-19 infection on their bodies and their lives. The document discusses when long COVID may be considered a disability under the ADA, Section 504, and Section 1557, and shares examples along with related resources that may be helpful. Follow this link to review the US Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.

Key medical documentation includes:

  1. Confirmation of COVID-19 infection by positive test or documented new onset health issues that started after bing infected or vaccinated

  2. Inflammatory markers and/or COVID-19 antibodies detected in blood work

  3. Diagnostic testing that indicates organ dysfunction (bloodwork, CT, MRI, Ultrasound, etc)

  4. Full neuropsychological evaluation to assess cognitive impairment

  5. Functional capacity exam to assess physical impairment

Steps 4 & 5 are especially helpful in providing that documentation if you are denied on the first SSD application. This approach should work even if you do not have a specific diagnosis of Long COVID by identifying your specific limitations.

Advocacy

The process of applying for disability benefits of any type is difficult.

The covidCAREgroup endorses ProMedView Clinical Consultants to guide you through the medical process of obtaining sufficient documentation for your application.

You may also need to consider engaging a disability lawyer to help you with your filing. An online search for the costs associated with retaining a lawyer to file a social security application indicates that there are caps and limits on the amounts that can be charged for services, and the way those fees can be collected. Attorneys do not require a retainer (down payment) because they are paid out of your past-due benefits when your benefits start (back pay), and they do not get paid unless you receive back pay benefits.

Keep moving forward…

The future may look different than it did before the pandemic, but we are resilient, and we can choose not to be defined by Long COVID because we are capable of adapting to new challenges. It’s important to keep in mind that over the next few years, you may recover to the point of being able to return to work.

  • Testing may identify a treatable condition, inflammation may resolve, etc.

  • You may find a new career that allows you to work within your limitations.

  • You can stop or modify SSD benefits at any time when you and your body are ready.

With lifestyle changes and time to recover, many of us have the ability to get stronger and back on our feet.

It’s better for you if you are living as close to a normal life as possible including family, home, work, and social activities.

Do your best to stay focused on recovery and management of Long COVID and try to avoid the “disabled” or “sick” mindset.


Long COVID Support

ProMedView Nurse Coaches - We get it.

Our clinical experts advocate for those with Long COVID.

  • Individual coaching

  • Group Q&A sessions

  • Peer support groups


Keep moving, keep breathing!

Brought to you by covidCAREgroup, connecting the dots of long COVID through education, research & resources.

Did this article help you? Please consider making a gift, donating, or purchasing a $25 annual membership. The covidCAREgroup isrun by volunteers. 100% of our funding comes from community donations are used to support our continued outreach initiatives.

COVID Care Group, LLC, is not a “not for profit” organization. Donations, gifts & memberships are not tax-deductible.

COVID Care Group, LLC is not a healthcare provider and does not provide medical advice, diagnosis, or treatment.


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