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Long COVID isn't Just a Serious Medical Condition

"It is also a long-term financial crisis for millions of Americans."

I Have Long COVID, What Are My Rights?

Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557

 

Although many people with COVID-19 get better within weeks, some people continue to experience symptoms that can last months after first being infected, or may have new or recurring symptoms at a later time.1   This can happen to anyone who has had COVID-19, even if the initial illness was mild.  People with this condition are sometimes called “long-haulers.”  This condition is known as “long COVID.”2

In light of the rise of long COVID as a persistent and significant health issue, the Office for Civil Rights of the Department of Health and Human Services and the Civil Rights Division of the Department of Justice have joined together to provide this guidance. 

This guidance explains that long COVID can be a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA),3  Section 504 of the Rehabilitation Act of 1973 (Section 504),4  and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557).5   Each of these federal laws protects people with disabilities from discrimination.6   This guidance also provides resources for additional information and best practices.  This document focuses solely on long COVID, and does not address when COVID-19 may meet the legal definition of disability.

The civil rights protections and responsibilities of these federal laws apply even during emergencies.7   They cannot be waived.

1.  What is long COVID and what are its symptoms?

According to the Centers for Disease Control and Prevention (CDC), people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.8

Examples of common symptoms of long COVID include:

  • 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

This list is not exhaustive.  Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain.

2. Can long COVID be a disability under the ADA, Section 504, and Section 1557?

Yes, long COVID can be a disability under the ADA, Section 504, and Section 1557 if it substantially limits one or more major life activities.9   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 of such individual (“actual disability”); a person with a record of such an impairment (“record of”); or a person who is regarded as having such an impairment (“regarded as”).10   A person with long COVID has a disability if the person’s condition or any of its symptoms is a “physical or mental” impairment that “substantially limits” one or more major life activities.

This guidance addresses the “actual disability” part of the disability definition.  The definition also covers individuals with a “record of” a substantially limiting impairment or those “regarded as” having a physical impairment (whether substantially limiting or not). This document does not address the “record of” or “regarded as” parts of the disability definition, which may also be relevant to claims regarding long COVID.

a. Long COVID is a physical or mental impairment

A physical impairment includes any physiological disorder or condition affecting one or more body systems, including, among others, the neurological, respiratory, cardiovascular, and circulatory systems.  A mental impairment includes any mental or psychological disorder, such as an emotional or mental illness.11

Long COVID is a physiological condition affecting one or more body systems.  For example, some people with long COVID experience:

  • Lung damage

  • Heart damage, including inflammation of the heart muscle

  • Kidney damage

  • Neurological damage

  • Damage to the circulatory system resulting in poor blood flow

  • Lingering emotional illness and other mental health conditions

Accordingly, long COVID is a physical or mental impairment under the ADA, Section 504, and Section 1557.12

b. Long COVID can substantially limit one or more major life activities

“Major life activities” include a wide range of activities, such as caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, sitting, reaching, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, writing, communicating, interacting with others, and working.  The term also includes the operation of a major bodily function, such as the functions of the immune system, cardiovascular system, neurological system, circulatory system, or the operation of an organ.

The term “substantially limits” is construed broadly under these laws and should not demand extensive analysis.  The impairment does not need to prevent or significantly restrict an individual from performing a major life activity, and the limitations do not need to be severe, permanent, or long-term.  Whether an individual with long COVID is substantially limited in a major bodily function or other major life activity is determined without the benefit of any medication, treatment, or other measures used by the individual to lessen or compensate for symptoms.  Even if the impairment comes and goes, it is considered a disability if it would substantially limit a major life activity when the impairment is active.

Long COVID can substantially limit a major life activity.  The situations in which an individual with long COVID might be substantially limited in a major life activity are diverse.  Among possible examples, some include:

  • A person with long COVID who has lung damage that causes shortness of breath, fatigue, and related effects is substantially limited in respiratory function, among other major life activities. 

  • A person with long COVID who has symptoms of intestinal pain, vomiting, and nausea that have lingered for months is substantially limited in gastrointestinal function, among other major life activities.   

  • A person with long COVID who experiences memory lapses and “brain fog” is substantially limited in brain function, concentrating, and/or thinking.

3. Is long COVID always a disability?

No.  An individualized assessment is necessary to determine whether a person’s long COVID condition or any of its symptoms substantially limits a major life activity.  The CDC and health experts are working to better understand long COVID. 

4. What rights do people whose long COVID qualifies as a disability have under the ADA, Section 504, and Section 1557?

People whose long COVID qualifies as a disability are entitled to the same protections from discrimination as any other person with a disability under the ADA, Section 504, and Section 1557.  Put simply, they are entitled to full and equal opportunities to participate in and enjoy all aspects of civic and commercial life. 

For example, this may mean that businesses or state or local governments will sometimes need to make changes to the way that they operate to accommodate a person’s long COVID-related limitations.  For people whose long COVID qualifies as a disability, these changes, or “reasonable modifications,” may include:

  • Providing additional time on a test for a student who has difficulty concentrating

  • Modifying procedures so a customer 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

  • Modifying a policy to allow a person who experience dizziness when standing to be accompanied by their service animal that is trained to stabilize them

5. What federal resources are there for people with symptoms of long COVID?

The contents of this document do not have the force and effect of law and are not meant to bind the public in any way.  This document is intended only to provide clarity to the public regarding existing requirements under the law or the Departments’ policies.

July 26, 2021

Footnotes

  • 1. See Centers for Disease Control and Prevention, Post-COVID Conditions, www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html (last visited July 21, 2021).

  • 2. The Centers for Disease Control and Prevention also recognizes other post-COVID conditions, a series of illnesses resulting in debilitating conditions, that can be similar to long COVID.  See Centers for Disease Control and Prevention, Post-COVID Conditions, www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html (last visited July 21, 2021).  This guidance may also be applicable to other post-COVID conditions.

  • 3. 42 U.S.C. §§ 12101-12103, 12131-12189.  Although the ADA’s definition of disability applies to all parts of the ADA, this guidance only addresses examples that may arise under Titles II and III of the ADA.

  • 4. 29 U.S.C. § 794.

  • 5. 42 U.S.C. § 18116. 

  • 6. This guidance does not address examples of reasonable accommodation or nondiscrimination in employment under Title I of the ADA or Section 501 of the Rehabilitation Act.  Employment issues related to COVID-19 are discussed in technical assistance issued by the U.S. Equal Employment Opportunity Commission, at https://www.eeoc.gov/wysk/what-you-should-know-about-covid-19-and-ada-rehabilitation-act-and-other-eeo-laws.

  • 7. See Department of Justice, Statement by the Principal Deputy Assistant Attorney General for Civil Rights Leading a Coordinated Civil Rights Response to Coronavirus (COVID-19), https://www.justice.gov/opa/pr/statement-principal-deputy-assistant-attorney-general-civil-rights-leading-coordinated-civil (last visited July 21, 2021); See also Department of Health and Human Services, Civil Rights and COVID-19, A Compendium of Guidance on the Civil Rights Implications of the COVID-19 Pandemic, https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html (last visited July 21, 2021).

  • 8. See Centers for Disease Control and Prevention, Post-COVID Conditions, www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html (last visited July 21, 2021).

  • 9. This guidance only addresses the definition of disability under these Federal civil rights laws.  It does not cover other definitions of disability or eligibility requirements such as those necessary to qualify for Federal benefit programs under Social Security.

  • 10. See, e.g., 42 U.S.C. § 12102(1); 29 U.S.C. § 705(9)(B), (20)(B); 28 C.F.R. §§ 35.108, 36.105; 45 C.F.R. § 92.102(c).

  • 11. 28 C.F.R. §§ 35.108(b), 36.105(b); 45 C.F.R. 92.102(c).

  • 12. While this guidance document focuses on long COVID, we note that COVID-19 is also a physiological condition affecting one or more body systems, and is therefore also a physical or mental impairment.

Content created by Office for Civil Rights (OCR)
Content last reviewed July 26, 2021

President Biden's Official Memorandum on Addressing the Long-Term Effects of COVID-⁠19

APRIL 05, 2022•PRESIDENTIAL ACTIONS

 

MEMORANDUM FOR THE HEADS OF EXECUTIVE DEPARTMENTS AND AGENCIES

SUBJECT:      Addressing the Long-Term Effects of COVID-19 

By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered as follows:

Section 1.  Policy.  My Administration has made combating the coronavirus disease 2019 (COVID-19) pandemic, and guiding the Nation through the worst public health crisis in more than a century, our top priority.  When I came into office, COVID-19 was wreaking havoc on our country — closing our businesses, keeping our kids out of school, and forcing us into isolation.  Today, America has the tools to protect against COVID-19 and to dramatically decrease its risks.  We move towards a future in which COVID-19 does not disrupt our daily lives and is something we prevent, protect against, and treat.

As we chart the path forward, we remember the more than 950,000 people in the United States lost to COVID-19.  They were beloved parents, grandparents, children, siblings, spouses, neighbors, and friends.  More than 200,000 children in the United States have lost a parent or caregiver to the disease.  Each soul is irreplaceable, and the families and communities left behind are still reeling from profound loss.  Many families and communities have already received support from Federal programs that help with the loss they have experienced.  As we move forward, we commit to ensuring that families and communities can access these support programs and connect to resources they may need to help with their healing, health, and well-being.

At the same time, many of our family members, neighbors, and friends continue to experience negative long-term effects of COVID-19.  Many individuals report debilitating, long-lasting effects of having been infected with COVID-19, often called “long COVID.”  These symptoms can happen to anyone who has had COVID-19 — including individuals across ages, races, genders, and ethnicities; individuals with or without disabilities; individuals with or without underlying health conditions; and individuals whether or not they had initial symptoms.  Individuals experiencing long COVID report experiencing new or recurrent symptoms, which can include anxiety and depression, fatigue, shortness of breath, difficulty concentrating, heart palpitations, disordered sleep, chest and joint pain, headaches, and other symptoms.  These symptoms can persist long after the acute COVID-19 infection has resolved.  Even young people and otherwise healthy people have reported long COVID symptoms that last for many months.  These symptoms may be affecting individuals’ ability to work, conduct daily activities, engage in educational activities, and participate in their communities.  Our world-class research and public health organizations have begun the difficult work of understanding these new conditions, their causes, and potential prevention and treatment options.  Our health care and support programs are working to help meet the needs of individuals experiencing the lasting effects of COVID-19.  To organize the Federal Government’s response, executive departments and agencies (agencies) must work together to use the expertise, resources, and benefit programs of the Federal Government to ensure that we are accelerating scientific progress and providing individuals with the support and services they need.

In addition, the American public is grappling with a mental health crisis exacerbated by the pandemic. Too many have felt the effects of social isolation, sickness, economic insecurity, increased caregiver burdens, and grief.  My Administration has made significant investments in mental health as well as substance use disorder prevention, treatment, and recovery support for the American public, including by expanding access to community-based behavioral health services.  We are committed to advancing these behavioral health efforts in order to better identify the effects of the pandemic on mental health, substance use, and well-being, and to take steps to address these effects for the people we serve.

Our Nation can continue to protect the public — and spare countless families from the deepest pain imaginable — if everybody does their part.  Today, we have numerous tools to protect ourselves and our loved ones from COVID-19 — from vaccines to tests, treatments, masks, and more.  My Administration recognizes the toll of this pandemic on the American public and commits to redoubling our efforts to support the American people in addressing the long-term effects of COVID-19 on their lives and on society.

Sec. 2.  Organizing the Government-Wide Response to the Long-Term Effects of COVID-19.  (a)  The Secretary of Health and Human Services (Secretary) shall coordinate the Government-wide response to the long-term effects of COVID-19.  My Administration will harness the full potential of the Federal Government, in coordination with public- and private-sector partners, to mount a full and effective response.  The Secretary shall report on the coordination efforts to the Coordinator of the COVID-19 Response and Counselor to the President and to the Assistant to the President for Domestic Policy.

    (b)  The heads of agencies shall assist and provide information to the Secretary, consistent with applicable law, as may be necessary to carry out the Secretary’s duties described in subsection (a) of this section.

    (c)  In performing the duties described in subsection (a) of this section, the Secretary shall seek information from relevant nongovernmental experts, organizations, and stakeholders, including individuals affected directly by the long-term effects of COVID-19.  The Secretary shall consider using all available legal authorities, as appropriate and consistent with applicable law, to assist in gathering relevant information, including a waiver under 42 U.S.C. 247d(f).

Sec. 3.  Report on the Long-Term Effects of COVID-19.  The Secretary, supported within the Department of Health and Human Services by the Assistant Secretary for Health and the Assistant Secretary for Mental Health and Substance Use, shall publish a public report within 120 days of the date of this memorandum outlining services and mechanisms of support across agencies to assist the American public in the face of the far-reaching and long-term effects of COVID-19.  The report shall outline Federal Government services to support individuals experiencing long COVID, individuals and families experiencing a loss due to COVID-19, and all those grappling with mental health and substance use issues in the wake of this pandemic.  The report shall also specifically address the long-term effects of COVID-19 on underserved communities and efforts to address disparities in availability and adoption of services and support for such communities.

Sec. 4.  National Research Action Plan on Long COVID.  (a)  Coordinated efforts across the public and private sectors are needed to advance progress in prevention, diagnosis, treatment, and provision of services for individuals experiencing long COVID.  The Secretary, supported by the Assistant Secretary for Health and in collaboration with the Secretary of Defense, the Secretary of Labor, the Secretary of Energy, and the Secretary of Veterans Affairs, shall coordinate a Government-wide effort to develop the first-ever interagency national research agenda on long COVID, to be reflected in a National Research Action Plan.  The National Research Action Plan will build on ongoing efforts across the Federal Government, including the landmark RECOVER Initiative implemented by the National Institutes of Health.  The Secretary shall release the jointly developed National Research Action Plan within 120 days of the date of this memorandum.

    (b)  The National Research Action Plan shall build upon existing research efforts and include strategies to:

         (i)     help measure and characterize long COVID in both children and adults, including with respect to its frequency, severity, duration, risk factors, and trends over time;

         (ii)    support the development of estimates on prevalence and incidence of long COVID disaggregated by demographic groups and symptoms;

         (iii)   better understand the epidemiology, course of illness, risk factors, and vaccine effectiveness in prevention of long COVID;

         (iv)    advance our understanding of the health and socioeconomic burdens on individuals affected by long COVID, including among different race and ethnicity groups, pregnant people, and those with underlying disabilities;

         (v)     foster development of new treatments and care models for long COVID based on a better understanding of the pathophysiological mechanisms of the SARS-CoV-2 virus;

         (vi)    inform decisions related to high-quality support, services, and interventions for long COVID;

         (vii)   improve data-sharing between agencies and academic and industry researchers about long COVID, to the extent permitted by law; and

         (viii)  specifically account for the pandemic’s effect on underserved communities and rural populations.

Sec. 5.  General Provisions.  (a)  Nothing in this memorandum shall be construed to impair or otherwise affect:

         (i)   the authority granted by law to an executive department or agency, or the head thereof; or

         (ii)  the functions of the Director of the Office of Management and Budget relating to budgetary, administrative, or legislative proposals.

    (b)  This memorandum shall be implemented consistent with applicable law and subject to the availability of appropriations.

    (c)  This memorandum is not intended to, and does not, create any right or benefit, substantive or procedural, enforceable at law or in equity by any party against the United States, its departments, agencies, or entities, its officers, employees, or agents, or any other person.

    (d)  The Secretary is authorized and directed to publish this memorandum in the Federal Register.

 

JOSEPH R. BIDEN JR.

See, https://www.whitehouse.gov/briefing-room/presidential-actions/2022/04/05/memorandum-on-addressing-the-long-term-effects-of-covid-19/?utm_source=link

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