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. 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,” and this condition is commonly known as “Long COVID.”
On November 16, 2023, the U.S. Department of Health and Human Services (HHS) announced the establishment of the Secretary's Advisory Committee on Long COVID. For the full description of the Committee and to learn more about how to be considered for participation, visit the Federal Register Notice.
On July 31, 2023, HHS announced the formation of the Office of Long COVID Research and Practice, which will enhance efforts being undertaken across the U.S. government to improve the lives of those who continue to experience the long-term impacts of the worst public health crisis in a century.
In June 2023, the Social Security Administration issued technical guidance for health care and service providers who evaluate disability for people with Long COVID. While not intended for consumers, the guidance may be helpful in understanding how determinations are made.
On August 2, 2022, HHS delivered two major reports to President Biden in response his April 5, 2022, Memorandum on Addressing the Long-Term Effects of COVID-19:
- The Services and Supports for Longer-Term Impacts of COVID-19 Report (Services Report) outlines federally funded support and services that can help individuals experiencing the longer-term effects of COVID-19, including Long COVID and its associated conditions, mental health, substance use, and bereavement.
- The National Research Action Plan on Long COVID (the Research Plan) proposes a comprehensive and equitable research strategy to inform our national response to Long COVID.
ACL partnered with 13 other federal agencies in developing these reports, which together describe the wide range of services and supports available nationwide and lay out a research strategy going forward. ACL’s programs, and the disability and aging networks that provide them, offer a wide range of services and supports to help people with disabilities — including disabilities caused by Long COVID — and older adults live independently and fully participate in all of life’s activities. For more information and to help spread the word, visit COVID.gov/LongCovid.
For the 31st anniversary of the Americans with Disabilities Act in 2021, the White House published this comprehensive package of resources for people with disabilities, including people with Long COVID. It included some of these resources from across the federal government:
- ACL has published a guide to the community-based resources that can help people if they now need assistance to live in their own home, go to work or school, or participate in the community. These resources can provide information about what is available locally, help people connect to services, such as transportation and personal care attendants; help arrange reasonable accommodations and access vaccinations; and more.
- The Office for Civil Rights at HHS and Department of Justice published a webpage on COVID-19 and civil rights and guidance explaining that some individuals with Long COVID may have a disability under various civil rights laws that entitles them to protection from discrimination.
- On Monday, August 2, 2021, the White House Office of Public Engagement, in conjunction with the U.S. Departments of Health and Human Services, Education, and Labor, hosted A Conversation about Long COVID to review the guidance, share information on how to access supports, and answer questions.
- The Office of Disability Employment Policy (ODEP) at the Department of Labor launched a new webpage that includes resources on Long COVID organized by stakeholder groups, such as workers, youth and young adults, and employers. The resources include information on requesting and providing workplace accommodations for individuals with Long COVID. In addition, ODEP released a blog discussing the impact of Long COVID on workers with disabilities.
- CDC's COVID-19 resource site has a page with information on post-COVID conditions.
- The Department of Education’s Office for Civil Rights and Office of Special Education and Rehabilitative Services have published Long COVID under Section 504 and the IDEA: A Resource to Support Children, Students, Educators, Schools, Service Providers, and Families.
- The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has launched a dashboard that shows how many millions of Americans are estimated to be experiencing "Long COVID" symptoms. The dashboard includes breakdowns by state and county.
- A new issue brief from the National Assistive Technology Act Technical Assistance and Training (AT3) Center describes how AT Act programs funded by ACL are helping individuals experiencing long-term effects from COVID-19 and provides examples of common assistive technology solutions.
We'll continue to add resources to this page, and we'd love to add resources from across the aging and disability networks — please share yours!