As many as 23 million people in the U.S. have developed Long COVID, or ongoing health conditions resulting from a COVID-19 infection. Long COVID can qualify as a disability when symptoms substantially limit one or more life activities, including employment and education. Youth and young adults with a Long COVID disability may now need assistance understanding their disability, understanding their employment and education rights and navigating systems of support. States have taken several approaches to support youth experiencing Long COVID disability (as either their first identified disability or in addition to an existing disability).
Understanding Long COVID
Long COVID – also known as long-haul COVID, post-acute COVID, post-COVID conditions and chronic COVID – refers to a range of new, returning or ongoing physical and/or mental health problems people who have been infected with COVID-19 experience four or more weeks following their initial infection. Long COVID can present as different types and combinations of physical and mental health problems, including:
- Difficulty breathing or shortness of breath;
- Tiredness or fatigue;
- Difficulty thinking or concentrating (i.e., brain fog);
- Sleep problems;
- Joint or muscle pain;
- Anxiety and depression;
- Post-Traumatic Stress Disorder (PTSD);
- Psychosis; and
- Dizziness upon standing (i.e., lightheadedness).
Long COVID as a Disability
In some people, Long COVID can be severe enough that it substantially limits one or more major life activities (such as employment and education), therefore qualifying as a disability under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973. Individuals whose Long COVID symptoms meet the criteria of a disability are therefore protected from discrimination and entitled to workplace and education rights and accommodations. Some examples of these accommodations include:
- Altered break and work schedules for people experiencing tiredness or fatigue.
- Utilization of a service animal trained to stabilize employees experiencing dizziness.
- Relocation of an employee’s workstation to a quieter location, for those who have difficulty concentrating.
- Job restructuring to minimize the amount of walking for an employee experiencing difficulty breathing.
- Remote work options for people experiencing anxiety or depression, to help them better manage their mental health conditions.
Supporting Youth and Young Adults with a Long COVID Disability
While Long COVID appears to be somewhat less common in youth and young adults, they can still experience Long COVID symptoms. Long COVID can be a youth’s first identified disability, exacerbate an existing disability or be experienced in addition to a pre-existing disability. In any of these circumstances, youth and young adults who have Long COVID that meets the definition of a disability may now need assistance:
- Understanding and managing their disability in educational and workplace settings.
- Understanding their workplace rights and protections.
- Understanding their educational rights, including how individualized education programs (IEPs) and Section 504 Accommodation Plans may support them.
- Initiating the IEP and/or 504 Plan evaluation process.
- Accessing disability supports in postsecondary education settings.
- Disclosing their disability to employers or postsecondary institutions and requesting accommodations.
- Understanding and connecting to other resources that can help them access education and employment, such as transportation, assistive technology, personal care attendant services, benefits counseling and Achieving a Better Life Experience (ABLE) Accounts.
- Understanding processes and resources if they have been denied access to, or experienced discrimination in, education or employment.]
State Approaches to Supporting Youth and Young Adults with a Long COVID Disability
States have developed a variety of policies, programs and resources to support the education, employment and transition needs of youth and young adults with a Long COVID disability. Visit CAPE-Youth’s Mental Health page for more information on how states are addressing the general mental health needs of youth with disabilities throughout the pandemic, not just those experiencing mental health symptoms associated with Long COVID. Here are some of the Long COVID efforts.
Educating the public about Long COVID symptoms, causes and treatment.
Missouri created a guide that documents symptoms of Long COVID and explains how they may appear in people with intellectual or developmental disabilities.
New York provided information on approaches to treating Long COVID in various populations and settings across age, race/ethnicity and geography. The website also provides recommendations for actions the state can take to better understand, treat and prevent Long COVID.
Wisconsin detailed information about Long COVID, including symptoms, who is at risk and potential health conditions that could arise. It has embedded links to a variety of other resources such as medical care for Long COVID, Long COVID support groups and support for employees with Long COVID.
Providing support programs and mental health resources to support individuals with Long COVID
Colorado’s Spirit Crisis Counseling and Training Program is designed to support individuals and communities impacted by the challenges of COVID-19. The program provides free, anonymous crisis counseling to promote recovery, resilience and empowerment for survivors and those affected by the pandemic.
The New York State Worker’s Compensation Board includes a section on COVID-19 Long-Haul on its website to assist workers in filing a claim for free medical care and/or lost wage replacement through workers’ compensation insurance as a result of Long COVID.
Connecticut‘s Campus Mental Health Program was funded by the Governor’s Emergency Education Relief Fund starting in 2021 to support mental health programs for college students, including through increased access to and availability of care, education and awareness and training.
The Idaho Department of Health and Welfare created a webpage that explains what Long COVID is and lists symptoms. The webpage also includes links to help citizens connect with others who have been diagnosed with Long COVID, including Facebook support groups for those who have been diagnosed with Long COVID or support groups for parents of children who have been diagnosed with Long COVID.
Recognizing Long COVID as a disability under the ADA, Section 504 and section 1557
The Michigan Department of Education recognizes challenges that students may experience due to the long-term health effects of COVID-19 and offers guidance on Long COVID as a potential qualifier for accommodations.
The Missouri Disability Portal provides resources for people with Long COVID and information on Long COVID under Section 504 and the IDEA, workers with Long COVID and the Americans with Disabilities Act.
The Oregon Health Authority published a series of blogs about Long COVID, including information about symptoms, how it affects certain organs and how it is protected by the Americans with Disabilities Act.
Providing funding to address the need for Long COVID support services
Texas provides a grant to expand public health capacity by supporting healthcare job development, training and placement in rural and tribal communities. The expected impact of this program is to enhance clinical and operational capacity to adequately address the population health needs of rural communities affected by COVID-19, including those dealing with the effects of Long COVID
Nebraska appropriates funding to a rehabilitation hospital for establishing a model system of care for individuals who have recovered from COVID-19 with persistent symptoms. The model system of care must include post-COVID-19 research; post-COVID-19 clinics; mental health services expanded to address the cognitive and psychiatric needs of post-COVID-19 patients; and educational materials for healthcare providers and the public.
Illinois Bill SB 1510 creates a Health Care Transformation Program and corresponding funding to, in part, recognize and address the need for post-COVID care. It requires program proposals to provide an explanation of how they will address the need for post-COVID care in the community.
The District of Columbia recognizes that many workers continue to need time away from work to deal with the impacts of COVID-19, including the long-term impacts of COVID-19, and finds that emergency circumstances necessitate paid leave for COVID-19 vaccination and recovery and continued access to unpaid family and medical leave for COVID-related reasons for the foreseeable future.
Accommodating Employees with COVID-19 or Long COVID: This article from the Job Accommodation Network provides information on the process employers can follow for making reasonable accommodations for employees with a Long COVID disability, as well as examples of reasonable accommodations corresponding to different Long COVID limitations (e.g., extreme fatigue, joint pain).
Briefing on Guidance for Those Experiencing Symptoms of Long COVID: This briefing from the White House Office of Public Engagement and the Departments of Health and Human Services (HHS), Education and Labor reviews HHS guidance on when and how various civil rights laws protect people with a long COVID disability.
Coronavirus Resources – COVID-19 and Long COVID-19: This webpage from the U.S. Department of Labor’s Office of Disability Employment Policy provides an overview of Long COVID and provides links to resources for workers, employers, youth and young adults, and policymakers around Long COVID and the workplace.
Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557: This resource from the U.S. Department of Health and Human Services provides information on what Long COVID is, under what circumstances it qualifies as a disability and rights to which people with a Long COVID disability are entitled.
How ACL’s Disability and Aging Networks Can Help People with Long COVID: This resource from the Administrator for Community Living explains the community-based organizations and specialized programs available to help people with Long COVID disabilities navigate services and address their independent living and technology needs.
Long COVID: This webpage is part of COVID.gov, and provides links to various federal resources to help people understand and navigate a Long COVID disability.
Long COVID and the Americans with Disabilities Act: This FAQ resource from the Job Accommodation Network helps individuals with Long COVID determine whether they are entitled to accommodations at work and understand the specifics and process around asking for accommodations.
Long COVID and Workplace Accessibility: This webpage from the Partnership on Employment and Accessible Technology provides links to resources that detail the classifications behind disability status and Long COVID and provide guidance to employers and employees who may be new to the accommodations process.
Long COVID or Post-COVID Conditions: This webpage from the Centers for Disease Control and Prevention provides an overview of Long COVID, including types of symptoms and impacts on children and adolescents.
Long COVID under Section 504 and the IDEA: A Resource to Support Children, Students, Educators, Schools, Service Providers, and Families: This resource from the U.S. Department of Education provides information on Long COVID as a disability and the responsibilities of schools and public agencies to provide services and reasonable accommodations to children and students who have a Long COVID disability.
Long-Term Health Effects Stemming from COVID-19 and Implications for the Social Security Administration: A Workshop: This virtual workshop from the National Academies of Sciences, Engineering and Medicine explores the long-term and potentially disabling health effects stemming from COVID-19 infection and how they might impact survivors’ ability to work.
Post-COVID Care Centers (PCCC): This resource from the non-profit organization Survivor Corps provides information on PCCCs, or centers that bring together multidisciplinary teams to provide coordinated and comprehensive treatment to people experiencing Long COVID.
Services and Supports for Longer-Term Impacts of COVID-19: This report from the U.S. Department of Health and Human Services discusses current federal services and supports that address the longer-term effects of COVID-19. This includes information on Long COVID as a disability, and the rights and supports people with Long COVID are entitled to.
State and Territory AT Act Programs Support Post-COVID Conditions (Long COVID): This resource from the Assistive Technology Act Technical Assistance and Training Center (AT3) explains types of assistive technology that can be utilized to support individuals experiencing various forms of Long COVID.
What You Should Know About COVID-19 and the ADA, the Rehabilitation Act, and Other EEO Laws: This resource from the U.S. Equal Employment Opportunity Commission provides information on when COVID is considered a disability under the ADA and eligibility for reasonable accommodations.
Workers with Long COVID-19: You May be Entitled to Workplace Accommodations: This blog from the U.S. Department of Labor’s Office of Disability Employment Policy explains (in both Spanish and English) the rights that people with a Long COVID disability have to reasonable accommodations and the process around requesting them.