What You Need to Know About "Long COVID" and Your Rights Under Disability Rights

Lauren Blachowiak, MEd and Sara Bovat, MSW

September 270, 2021

Download

pdf File What You Need to Know About (297KB) [download]

Most people who get COVID-19 recover within days or weeks of contracting the virus. However, some people experience Long-COVID conditions for weeks or even months longer.

Long COVID conditions are also often commonly known as "Post-COVID conditions," "long-haul COVID," "post-acute COVID-19," "long-term effects of COVID," or "chronic COVID."

Healthcare professionals, policymakers, and government officials continue to learn more about Long COVID and its impact on the lives of people experiencing it over time. Individuals with or without disabilities prior to contracting Long COVID may be entitled to protections and services under the Americans with Disabilities Act and other disability rights laws.

Below we provide explanations to frequently asked questions about the rights, protections, and services afforded that may be afforded to individuals experiencing Long COVID:

Q1. What is "Long COVID? How do I know if I have it?

Most people who get COVID-19 recover within days or weeks of contracting the virus. However, some people experience Long COVID for weeks or even months longer. Long COVID conditions can be a "wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19."

Examples of common symptoms of Long COVID may include, but are not limited to:

  • Tiredness or fatigue
  • Difficulty thinking or concentrating (sometimes called "brain fog")
  • Shortness of breath or difficulty breathing
  • Headache
  • Dizziness on standing
  • Fast-beating or pounding heart (known as heart palpitations)
  • Chest pain
  • Cough
  • Joint or muscle pain
  • Depression or anxiety
  • Fever
  • Loss of taste or smell

The symptoms of Long COVID vary from person-to-person. The CDC provides an extensive list of common, new and ongoing symptoms from which those with Long COVID conditions may suffer.

The best way to know if you have Long COVID conditions is to ask your health care provider for their expert medical advice, especially if you experience any of these symptoms four or more weeks after first being infected with COVID-19.

Q2. What is the Americans with Disabilities Act (ADA)?

The Americans with Disabilities Act of 1990 (ADA) i prohibits discrimination against individuals with disabilities and provides a broad scope of protections from discrimination based on disability.

The term 'disability' is defined broadly under the ADA to include any person who:

  • Has a physical or mental impairment that substantially limits one or more major life activities[1];
  • Has a record of such an impairment; or
  • Is regarded as having such an impairment.

Major life activities under ADA include functions that are important to everyday life. They can include breathing, walking, talking, hearing, seeing, performing manual tasks, performing your job, and other daily life disruptions. Major life activities may also include major bodily functions, such as immune system functions, digestion, respiration, etc.

Under the ADA, individuals with disabilities are protected from discrimination in employment, transportation, communications, public accommodations, and access to state and local services. Individuals who believe their rights have been violated under the ADA can file a claim with the corresponding federal agency.

Q3. Can Long COVID be a disability under the ADA?

Long COVID often involves a physical and/or mental impairment, and can therefore be considered a disability under the ADA. When someone with Long COVID experiences physical or mental impairments, where one or more bodily functions are impacted (e.g. lung, heart, kidney, mental health damage, etc.), the person is protected under the ADA and can request reasonable accommodations.

However, an individual assessment is still needed to determine if Long COVID qualifies as a disability under the ADA. Someone with Long COVID has a disability when their Long COVID symptoms significantly limit one or more major life activities. For example, someone who has trouble breathing as a result of Long COVID.

Those who  experience physical and/or mental health impairments from Long COVID can request reasonable accommodations under the ADA. Title I of the ADA defines a reasonable accommodation as a modification or change to a policy, program, service, or rule to make sure that a person with disabilities can have equal opportunity to participate.

Examples of reasonable accommodations for those with Long COVID may include, but are not limited to:

  • A change in the work environment or the way things are done during a hiring process, such as adjusting work equipment or allowing a remote work arrangement.
  • Modifying procedures at a store or other place of business, so a customer with Long COVID symptoms who finds it too tiring to stand in line can announce their presence and sit down without losing their place in line
  • Providing refueling assistance at a gas station for a customer whose joint or muscle pain prevents them from pumping their own gas
  • Allowing a person who experiences dizziness when standing from Long COVID to be accompanied by their service animal that is trained to stabilize them

Q4. Is receiving a diagnosis for Long COVID important to benefit from protections from the ADA and other disability rights laws?

No, it is not necessary to have a Long COVID diagnosis, previous COVID-19 diagnosis, nor COVID-19 antibodies in order to benefit from the ADA and other disability rights laws. Rather, eligibility is defined by the impact of the Long COVID condition or its symptoms on a person's ability to conduct one or more major life activities.

This distinction, outlined in the HHS and DOJ joint guidance, is especially important considering the inequitable access to COVID-19 testing at the onset of the pandemic, when individuals with Long COVID may not have been able to take a COVID-19 test or receive an official diagnosis of Long COVID.

Q5. In addition to the ADA, under what other disability rights laws might protect me if I have Long COVID?

Those who experience physical and/or mental impairments from Long COVID are protected by several disability rights laws. In addition to the ADA, individuals with Long COVID may also qualify for protections under:

Like the ADA, these laws and their related rules define a person with a disability as an individual with a physical or mental impairment that substantially limits one or more of the major life activities.

Anyone who has Long COVID conditions and meets this definition is protected under these laws and entitled to reasonable accommodations.

Q6. If I have Long COVID, which federal government agencies can help me?

Multiple federal government agencies are working to support people with Long COVID in navigating resources and understand their protections under federal law:

  • The Administration for Community Living (ACL) operates the Disability Information and Assistance Line (DIAL), which is a hotline to help people with disabilities get connected to COVID-19 vaccinations and community resources. Learn more at www.acl.gov/DIAL, or contact the line by phone at 888-677-1199 or email at [email protected]
  • The Office for Civil Rights of the Department of Health and Human Resources (HHS) has updated guidance on protections for Long COVID under HHS civil rights laws. If you believe that your rights under these protections have been violated, you may file a complaint.
  • The Civil Rights Division of the Department of Justice has updated guidance on COVID-19 and ADA. If you believe that your rights under the ADA have been violated, you may file a complaint.
  • You can learn more about Long COVID from the CDC website, which is continuously updated as scientists learn more.

Q7. If I have Long COVID, which community programs can help me?

The Administration for Community Living (ACL) has compiled a list of community-based organizations that may support individuals with and without disabilities experiencing Long COVID:

  • Centers for Independent Living (CILs): Your local CIL may be able to support you by coordinating services, transportation, personal care attendant services, and accessibility needs.
  • Aging and Disability Resource Centers (ADRCs): Your local ADRC may be able to provide support as you navigate your state's systems of services.
  • Area Agencies on Aging (AAAs): Your local AAA may help support coordination of any personal care attendant services, transportation, and other needs as a result of Long COVID.
  • Protection and Advocacy Systems (P&As): Your local P&A may be able to support case management, access to services, and accessibility needs.
  • State Assistive Technology Programs (AT): Your state AT may be able to support your assistive technology needs as a result of Long COVID.
  • State Long-Term Care Ombudsman Programs: Your local ombudsman program may be able to support individuals living in congregate care settings receive needed supports as a result of Long COVID.
  • Native Elder Service Locator: Tribal and Native American elders with Long COVID may receive support in case management, transportation, and other needs.

You can also be connected to all of the community-based services listed through the Disability Information and Assistance Line (DIAL), which is a hotline to help people with disabilities get connected to COVID-19 vaccinations and community resources. Learn more at www.acl.gov/DIAL, or contact the line by phone at 888-677-1199 or email at [email protected]

Q8. What types of protections and reasonable accommodations may I receive at work if I have Long COVID?

Under the ADA, individuals with Long COVID may qualify for protections and reasonable accommodations at their workplace under the ADA, the Rehabilitation Act, and other Equal Employment Opportunity (EEO) laws.

An individual with Long COVID qualifies if they:

  • Meet the definition of disability provided in Title I of the ADA;
  • Are qualified for the job; and
  • Work for either a public employer, or private employer that has at least 15 employees.

Employees with Long COVID who meet the above qualifications are protected by law from discrimination in the workplace and entitled to reasonable accommodations, such as modified equipment, work schedules, or training materials. The Job Accommodations Network has an FAQ with additional information regarding Long COVID and ADA in the workplace.

  • Individuals with and without disabilities can learn more about their rights in the workplace during COVID-19 under the ADA, the Rehabilitation Act, and other EEO laws with this guidance from the U.S. Equal Employment Opportunity Commission.

Q9. What types of protections and reasonable accommodations may my child receive at school if they have Long COVID?

Students experiencing Long COVID may be eligible for protections, accommodations, and/or services in schools under both the IDEA and Section 504.

Students who experience Long COVID symptoms between the ages of 3 to 21 years-old may qualify for special education and other services under IDEA if their disability or health conditions impact their educational performance. If an evaluation finds a student eligible, the school must work with the family to develop an Individualized Education Plan (IEP), which would provide detail about how the school will accommodate and provide services to the student. Students in PreK-12 who had an IEP and/or Section 504 Plan prior to being ill with COVID-19 can request re-evaluations to determine whether additional services, accommodations, and/or a placement change are needed. Infants and toddlers ages 0-3 years-old with Long COVID may also qualify for early intervention services under IDEA.

Students of all ages who suffer from Long COVID, including those in postsecondary programs, may be eligible for services and accommodations under Section 504 if their condition substantially limits a life activity and/or has been recorded. A student's educational performance does not need to be impacted by Long COVID to be eligible for a Section 504 plan and to receive services, accommodations, and modifications to their educational programming.

For more information, see this guidance on students with Long COVID released by the U.S. Department of Education's Office for Civil Rights and the Office of Special Education and Rehabilitative Services.

---

The COVID-19 pandemic continues to be an evolving event. Experts are still studying and learning about COVID-19. For the most up-to-date information please check the CDC website: https://www.cdc.gov/coronavirus/2019-nCoV/index.html.


[1] Major life activities include functions that are important to everyday life. They can include breathing, walking, talking, hearing, seeing, performing manual tasks, performing your job, and other daily life disruptions. Major life activities may also include major bodily functions, such as immune system functions, digestion, respiration, etc.