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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.
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
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:
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.
belonging to a class of sounds considered as usually longer in duration than another class, as the vowel of bought as compared to that of but, and in many languages serving as a distinctive feature of phonemes, as the ah in German Bahn in contrast with the a in Bann, or the tt in Italian fatto in contrast with the t in fato (opposed to short (def. 16b)).
Long-term care services and supports (LTSS) includes a range of services and supports individuals may need to meet their health or personal needs over a long period of time.1 Most LTSS is not medical care, but rather assistance with the basic personal tasks of everyday life, sometimes called "Activities of Daily Living" (or ADLs) which include such everyday tasks as bathing, dressing, toileting and eating (Doty & Shipley, 2012).2 Many Americans prefer not to think about this need for assistance or who will provide it. They underestimate how likely it is they will need it and how much it will cost (Wiener et al., 2015; Kane, 2013; Tompson et al., 2013). Even if they correctly consider the chances of becoming disabled and needing daily help, many Americans mistakenly assume their health insurance covers these costs. However, health insurance does not cover LTSS costs, and Medicare, the major public insurance program for older Americans, does not cover most LTSS expenses (Centers for Medicare & Medicaid Services, 2015).3
As the United States population ages, a higher proportion of individuals will likely need and use LTSS. Most Americans who receive formal LTSS pay out-of-pocket. For those with longer spells, they may pay out-of-pocket until they qualify for Medicaid. Reliance on Medicaid for those that cannot afford the full costs of LTSS may result in increased federal and state spending for LTSS. According to projections produced by the Congressional Budget Office, due to population growth, LTSS expenses (including all formal care, Medicaid and other private and public sources of payment) could more than double from 1.3 percent of gross domestic product (GDP) in 2010 to 3 percent of GDP in 2050 if the rate of functional limitations among those age 65 and older remains constant (Congressional Budget Office, 2013).
This ASPE Research Brief presents information about the risk of needing care and associated costs to provide context for policymakers and others considering LTSS financing proposals. A microsimulation model is used to describe the future care needs for Americans. This model can predict what percentage of individuals will develop a disability, have LTSS needs, use paid LTSS, and among those that use paid LTSS, how much they use and for how long. It estimates care costs, and how they would be financed under current policies. Microsimulation modeling provides not only the average likelihood of these outcomes, but also describes the distribution of these needs and costs. Throughout the Brief we focus on LTSS needs resulting from a disability that meet the criteria set in the Health Insurance Portability and Accountability Act (HIPAA): a need for assistance with at least two ADLs5 that is expected to last at least 90 days or need for substantial supervision for health and safety threats due to severe cognitive impairment.
Many Americans who survive to age 65 can expect to need and use LTSS--our estimates suggest this will be true for approximately half the population. On average, the projected duration of LTSS need is two years, and the projected use of paid LTSS is one year. The average cost of this care is $138,000. However, a number of people can expect to need LTSS for many years and to have care costs that total hundreds of thousands of dollars. Even average long-term costs can be out of reach for many Americans without some kind of financing system in place. Medicaid is an important payer for LTSS, but because it serves only those who meet income and asset criteria, many families pay for LTSS out-of-pocket. Private LTSS insurance has only a modest reach, and it predominantly covers costs for those high in the income distribution. Similarly, other public expenditures (for example, including Veterans Administration care) only help to cover small shares of the population with long-term care needs. The results presented here highlight the need for better planning for LTSS to accommodate both average and catastrophic financial risks associated with chronic disability.
DYNASIM's LTSS projections draw information from a wide range of cross-sectional and longitudinal sources, including the HRS, Medicare Current Beneficiary Study, and National Health and Aging Trends Survey.
All age 65 plus cost projections are presented in constant 2015 dollars. Dollar amounts are rounded to the nearest $100 or $1000, depending on the metric, reflecting the inherent uncertainty surrounding the projections. Tables expressed in PDV are in the Appendix (Tables A1-A9). PDV is computed using the Social Security Trustees' ultimate real interest rate of 2.9 percent. (Because the Trustees assume long-range price growth to average 2.7 percent, this amounts to a nominal discount rate of about 5.6 percent in the long-run.)
Favreault M, & Johnson R (2015). Task 6: Projections of lifetime risk of long-term services and supports at ages 65 and older under current law from DYNASIM. Memorandum for ASPE produced under Contract Number HHSP23320095654WC, Task Order HHSP233370292T. Washington, DC: The Urban Institute.
This Research Brief, authored by Melissa Favreault (Urban Institute) and Judith Dey (Department of Health and Human Services), presents information about the risk of needing care and associated costs to provide content for policymakers and others considering long-term care financing proposals.
The authors gratefully acknowledge conceptual and modeling help from Owen Haaga, Paul Johnson, Richard Johnson, and Brenda Spillman. We also thank Chris Giese, Richard Johnson, Harriet Komisar, William Marton, Al Schmitz, Brenda Spillman, Anne Tumlinson, and Joshua Wiener for helpful comments on earlier drafts of the longer report on which this brief is based. We are also grateful to them and others in the LTSS research community for extensive conversations about specification issues. Many advisory panel members and attendees of seminars describing earlier versions of these projections helped to refine our work. This remains work in progress that will be updated regularly as new data become available. All errors are our own.
Additionally, all long-term care facilities are required to post, in a visible location, the phone number for the local Ombudsman office and the Statewide CRISISline number 1-800-231-4024. The CRISISline is available 24 hours a day, 7 days a week to take calls and refer complaints from residents in long-term care facilities.
Long-Term Care Ombudsman representatives assist residents in long-term care facilities with issues related to day-to-day care, health, safety, and personal preferences. Problems can include, but are not limited to:
FLTCIP provides long term care insurance to help pay for costs of care when enrollees need help with activities they perform every day, or you have a severe cognitive impairment, such as Alzheimer's disease.
Long COVID most often occurs in people who had severe COVID-19 illness, but it is not restricted to those who were critically ill or hospitalized. People with mild disease and even those who did not develop symptoms can also be affected. In fact, most people with long COVID had mild acute COVID. Adults and children can both be affected, though Long COVID appears to be more common in adults. Researchers do not yet know how common the condition is, but studies have estimated that it occurs in 5% to 30% of people with COVID-19. 5376163bf9
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