DREDF Policy Recommendations for Reducing COVID-19 Nursing Home Deaths Through Innovative HCBS

May 21, 2020

via Email Submission

Susan M. Collins, Chairman
Robert P. Casey, Jr., Ranking Member
Senate Special Committee on Aging

The Disability Rights Education and Defense Fund (“DREDF”) appreciates the opportunity to provide comment to the Senate Special Committee on Aging for their May 21, 2020 Hearing on “Caring for Seniors Amid the COVID-19 Crisis.” DREDF is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. In the more than 40 years that have passed since our founding, we have persistently fought for the right of people with disabilities to be fully integrated within all aspects of community life, including the receipt of accessible and equally effective healthcare in the community rather than in segregated nursing homes. DREDF’s work is based on the knowledge that people with disabilities of varying ages, racial and ethnic backgrounds, genders, and sexual orientations are fully capable of achieving self-sufficiency and contributing to their communities with access to needed services and supports and the reasonable accommodations and modifications enshrined in U.S. law.

The coronavirus pandemic raises the highly aligned interests of older Americans who are aging into increased functional impairments, people with disabilities who are increasingly surviving to older ages, and younger people with disabilities who have long term supportive service needs. All of these sub-populations are highly vulnerable to COVID-19, were subject to increased isolation and segregation in institutional long-term care (LTC) settings even before the pandemic, are the primary populations that use home and community-based services (HCBS), and are at risk of discriminatory medical rationing if/when hospital and medical facilities put Crisis Standard of Care policies into place during surge demand for COVID-19 treatment.[1]

COVID-19, Long-Term Care Facilities, and People with Disabilities

Along with the rest of the country, DREDF has closely followed COVID-19 infection, hospitalization, and death rates as reported by states and federal agencies. We have noted with dismay the release of more granular information about where infections and deaths occur:  as of May 14, 18 or more states report 50% or more of COVID-19 deaths have occurred in long-term care facilities, with Minnesota, New Hampshire, and Rhode Island each reporting over 75% of deaths occurring in LTC facilities. Only Nevada, New York, and D.C. report less than 24% of deaths happening in LTC, and 15 states have not yet reported location-specific numbers.[2] The Centers for Medicare and Medicaid Services (CMS) set a new federal reporting requirement on states to provide the Centers for Disease Control and Prevention (CDC) with data by May 16 on how many coronavirus cases and deaths occur in nursing homes and assisted living facilities in the state. This information is expected to be made public by the end of May so we will soon have a more complete national picture.[3]  But even with incomplete state information, there is enough data and media coverage, not only from the U.S. but around the world, to understand that people with disabilities and seniors who live in nursing homes, psychiatric hospitals, and other institutions, as well as the employees who work there, bear an elevated risk of catching COVID-19 and dying from the virus.

As shocking as the numbers are, translating to COVID-19 deaths of well over 16,000 nursing home residents and staff, they may reflect underreporting. The ramping up of virus testing among the general population in some states over the past several weeks has not always been matched by increased testing at nursing homes,[4] and even where nursing home testing has been mandated as in Massachusetts, where 90% of LTC residents and staff are to be subject to baseline testing by May 25, questions about funding, logistics, and sufficient capacity to sustain test kit distribution, specimen collection, sample analysis, and the usefulness of virology versus serology testing remain unresolved.[5] As well, some COVID-19 deaths may be reported as hospital deaths if nursing home residents were first brought to a hospital for treatment and died outside of the LTC facility, a charge that has been brought in New York state where the low death rates reported in LTC facilities are an outlier.

The fact that older persons and persons with preexisting disabilities have greater susceptibility to catching and becoming seriously ill or dying with COVID-19 may lead to the conclusion that coronavirus deaths in LTC facilities are less a function of longtime questions about congregate living conditions, infection control, and transparency, and more the inevitable result of who lives there, but advocates for nursing home accountability and reform dispute this.[6] The assumption that the people who live in nursing homes would all fall victim to the coronavirus regardless of where they lived is also put into question by the fact that not all seniors and people with disabilities live in institutions.  Approximately 5.1 million people live in nursing homes or residential care facilities, representing 1.6% of the U.S. population.[7] The CDC estimates that 61 million people live with a disability in the U.S.,[8] and the National Center for Health Statistics reports that the national rate of nursing home residence in 2016 among those over 65 was 15/1000 persons, rising to 66/1000 persons for those over 85.[9] Simply put, millions of people with disabilities and older persons live in the community and are not dying from COVID-19 at the same rate, even though many have the same level of LTC need as nursing home residents.

There has not yet been any publicly available comparison of infection and death rates between people with disabilities and older persons who are living in the community and those who are living in institutions, but both groups face many of the same health risks, including the absolute necessity of interacting and working with personal care assistants, limited availability of personal protective equipment (PPE), barriers to virus testing, and exposure to the virus when seeking regular healthcare and undergoing health maintenance activities. This next level of data comparing the COVID-19 risks and recovery of LTC facility residents and disabled and older persons in the community will be critical in confirming what disability rights have long asserted: institutionalization is life-taking.  The coronavirus pandemic is only the latest in a long line of legal, social, economic, and medical reasons to minimize institutionalization whenever possible and further rebalance Medicaid toward home and community-based services wherever appropriate.

Home and Community-Based Responses to COVID-19

States are turning toward “re-opening” the economy and making life feel “normal” again.  That need is understandable and DREDF fully appreciates the urgent need to restore jobs and consumer confidence. But there is also agreement that recovery will take place over time, and older persons and people with disabilities and preexisting conditions will remain particularly vulnerable to COVID-19. In the short and mid-term, there are many individuals and their families who will need to continue sheltering-in-place and maintain strict social distance guidelines.

Maintaining an openness to innovative HCBS ideas for disabled and aging persons as the country enters varying stages of re-opening will be crucial. We must work together to avoid undoing the effort that has already gone into flattening the curve, maintaining relevant data on our efforts, and being willing to invest in solutions that could well lead to a match of urgent needs: such as the need of many newly unemployed individuals for rewarding jobs that pay a living wage and the need for an expanded HCBS workforce as a way to maintain the health and well-being of people with disabilities and older persons who have personal assistance needs.

The remainder of these comments are focused on brief descriptions of four distinct home and community-based projects that are helping or could help people with disabilities of various ages to safely shelter-in-place and/or recover from COVID-19 while continuing to avoid hospitalization or institutionalization as far as possible. One of these projects has been in place for many years, one is funded and is being implemented currently, one is in the planning stages, and the last is at the proposal stage. In all cases, links are provided for further information.

A model for emergency HCBS backup, including wheelchair assistance and repair, and available to individuals with disabilities irrespective of their healthcare insurance source, has long existed in Berkeley called Easy Does It.  It serves all persons living in the community who need personal assistance, regardless of how their regular HCBS is funded. The program was initiated by the need to make services available to people with disabilities who would otherwise have no option but to call upon costly paramedic or police emergency services. It was not originally started with epidemic or pandemic considerations in mind, but currently continues to serve a population that is subject to heightened risks of HCBS interruption due to COVID-19 concerns. A brief describing the program and its funding is available here and fully describes the concept:  https://dredf.docksal.site/wp-content/uploads/2019/12/Easy-Does-It-Emergency-HCBS-Accessible.pdf

Centene Health Plan is partnering with Centers for Independent Living in a few chosen pilot locations to provide, among other things, an emergency personal assistance registry for plan members that have long-terms services and supports needs. The project was initiated by the plan in response to member needs as COVID-19 interrupted regular HCBS and service providers for plan members. The April 20, 2020 press release with further details about the project is available at https://centene.gcs-web.com/news-releases/news-release-details/centene-offer-resources-disability-community-affected-covid-19.

The Community Living Policy Center (CLPC) is a Rehabilitation Research and Training Center with academic and non-profit research and policy partners, housed at University of California, San Francisco. CLPC recently published a brief that proposes a model for developing an “Emergency Personal Assistant Conservation Corp” that could provide HCBS to individuals whose regular personal assistants were unavailable due to COVID-19. The proposal integrates the need for virus testing, PPE, personnel training, and partnerships among disability advocacy, health, and other service organizations. A brief on the proposal is available at:  https://heller.brandeis.edu/community-living-policy/images/pdfpublications/2020aprcovidresponse.pdf

The Center for Disability Rights, Inc. reached out to Monroe County officials and advocates with a plan for providing alternative housing, healthcare, and HCBS to nursing home residents at significant risk of coronavirus infection. The proposal, which is intended to be adoptable across New York at local levels, is available at: http://cdrnys.org/blog/press-releases/center-for-disability-rights-cdr-is-working-with-monroe-county-officials-to-save-the-lives-of-local-nursing-facility-residents/.

The motivating force for the projects above is to provide disabled and older persons with a way to avoid the significant COVID-19 related risks of nursing home care. Helping vulnerable populations to stay safe in the community, and to return to the community whenever possible, could avoid additional exposure to the coronavirus when seeking care, whether COVID-related or not, and help individuals with disabilities to forestall being caught in surge-related medical rationing and crisis standards of care that can discriminate to various degrees against people with disabilities and older persons. The very real consequences of hospitals and hospital systems adopting discriminatory triage policies prompted the Health and Human Services’ Office for Civil Rights to publish its nondiscrimination bulletin,[10] developed in response to discriminatory guidance on medical rationing placed online by several states across the country. Moreover, the broad state and federal legal immunity being sought by nursing home industry providers during the COVID-19 emergency would remove a valuable tool for legal accountability and oversight of LTC facilities.[11] In the face of these additional threats, it is more important than ever to find ways to help people with disabilities and older persons to avoid nursing home stays.

Many of our leaders have spoken of making our world “look normal” again. In some ways, however, we encourage our lawmakers to look beyond “normal” to “better.” In pre-COVID days, too many people with disabilities and aging persons faced the constant threat of unwanted institutionalization, there was an escalating shortage of HCBS workforce, and a constant fight to better working conditions and wages for personal care assistants. We have the real-life opportunity to support models that will enable aging and disabled persons to remain a healthy part of their communities.

Recommendations

DREDF calls on lawmakers to incentivize partnerships among health plans, state and local entities, disability organizations, >aging organizations, and health and home and community-based service providers to fill the service and support gaps experienced by people with disabilities of all ages who are sheltering in place in the community and sheltering in place. We equally emphasize the importance of data collection on where, when, and how people with disabilities and older persons are experiencing COVID-19 infections and deaths. The failure to require granular data that includes information about such aspects as race, ethnicity, gender, weight, and age, obscures the reality of both disparities we already know, as well as disparities we have yet to fully expose. For instance, we know that over time, elderly people of color have disproportionately entered nursing home care even as elderly white people appear to find community-based alternatives,[12] thus leaving people of color more vulnerable to the higher risk of COVID-19 infection and death in institutional care. But we do not know how the COVID-19 death and infection rates of nursing home residents compare to such rates for people with similar levels of health and long-term care needs who live in the community with HCBS. Much of this is information that can be de-identified and derivable from the records of managed long-term care plans, health insurers, and hospital and hospital systems if they are directed to maintain sufficiently granular information. Our failure to attach importance to this data is willful ignorance that accepts the thousands of deaths of people with disabilities as a sad but unavoidable consequence of the COVID-19 pandemic.

Thank you again for the opportunity to submit comments to the Senate Special Committee on Aging for this important topic. We would be happy to address any questions or concerns about the above at any time.

Sincerely,

Silvia Yee,
Senior Staff Attorney

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[1] Times Editorial Board, “Editorial: Who Do We Save from Coronavirus and Who Do We Let Die? Take Wealth, Race and Disability Out of That Brutal Equation,” at https://www.latimes.com/opinion/story/2020-04-25/triage-rules-priority-ventilators. April 25, 2020.

[2] Kaiser Family Foundation, “State Policy and Policy Actions to Address Coronavirus,” at https://www.kff.org/health-costs/issue-brief/state-data-and-policy-actions-to-address-coronavirus/.  Updated as of May 14, 2020.

[3] Vanessa Romo, “For Most States, at least a Third of COVID-19 Deaths Are In Long-Term Care Facilities,” at https://www.npr.org/sections/coronavirus-live-updates/2020/05/09/853182496/for-most-states-at-least-a-third-of-covid-19-deaths-are-in-long-term-care-facili. May 9, 2020.

[4] Catherine Ho and Sarah Ravani, “Coronavirus testing slow to come to nursing homes, despite 35% of COVID-19 deaths,” at https://www.sfchronicle.com/bayarea/article/Coronavirus-testing-slow-to-come-to-nursing-15281942.php. May 20, 2020.

[5] Simon Johnson, Michael Mina, Tess Cameron, and Eric Friedman, “The Trouble with Mandatory Coronavirus Testing in Nursing Homes,” at https://www.bostonglobe.com/2020/05/19/opinion/trouble-with-mandatory-coronavirus-testing-nursing-homes/. May 19, 2020.

[6] Romo, supra.

[7] Gregg Girvan, “Nursing Homes and Assisted Living Facilities Account for 40% of COVID-19 Deaths,” at https://freopp.org/the-covid-19-nursing-home-crisis-by-the-numbers-3a47433c3f70. May 7, 2020.

[8] Centers for Disease Control and Prevention, “Disability and Health Infographics,” at https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html. Last reviewed September 9, 2019.

[9] J.P. Lendon, V. Rome, M. Sengupta, and L. Harris-Kojetin, “Long-Term Care Services Use-Rates in the United States–US Maps Supplement: National Study of Long-Term Care Providers, 2015-2016. National Center for Health Statistics. 2018,” at https://www.cdc.gov/nchs/data/nsltcp/2016_UseRateMaps.pptx.

[10] HHS Office for Civil Rights, “BULLETIN: Civil Rights, HIPAA, and the Coronavirus Disease 2019(COVID-19),” at https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf. March 28, 2020.

[11] Maggie Severns and Rachel Roubein, “As Residents Perish, Nursing Homes Fight for Protection from Lawsuits,” at https://www.politico.com/news/2020/05/26/nurising-homes-coronavirus-lawsuits-281654. May 26, 2020.

[12] Jorge Rivas, “New Disparity in Nursing Homes: Whites Leave, Elders of Color Enter,” at https://www.colorlines.com/articles/new-disparity-nursing-homes-whites-leave-elders-color-enter. October 21, 2011.