During the COVID-19 crisis, one of the most dangerous places to live or work is a crowded living facility—whether it be a nursing home, a group home, an institution, or a prison. Due to the lack of personal protective equipment (PPE), living wages, medical care, and sanitary living conditions, such settings have experienced staggering death tolls and infection rates. It is becoming increasingly evident that funding is needed to expand life-sustaining home and community-based services (HCBS) as an alternative to congregate care facilities, as this is not only a civil right but also imperative to ensure residents’ safety and contain the virus. Moreover, increased funding is necessary to protect workers who are providing direct support to seniors and people with disabilities.
As policymakers draft broader emergency management planning measures to mitigate the effects of the coronavirus and future extreme weather events and disasters made worse by climate change, these policies must include access to PPE, medications, supplies, and Medicaid services in order to ensure the well-being of seniors and people with disabilities during these crises. It is time for the nation to make a long-overdue commitment to expanding home and community-based services.
Congregate living facilities are particularly vulnerable during disasters
The 1999 Supreme Court case Olmstead v. L.C. confirmed that people have the right to receive care within an integrated community or home setting and that refusing to grant such services amounts to discrimination on the part of the state. Yet preserving access to resources and HCBS continues to be an uphill battle—particularly during emergencies, extreme weather events, and disasters, which in the past have led to involuntary institutionalizations. For example, 70 children were institutionalized in Florida following Hurricane Michael; and congregate homes, such as nursing homes and group homes for people with intellectual disabilities, saw increased admissions following hurricanes Katrina and Harvey. During the current crisis, deaths in long-term care facilities and nursing homes have accounted for 42 percent of COVID-19 deaths in the United States; yet nursing homes are still lobbying for immunity from any responsibility for COVID-19-related deaths. These alarming trends only further emphasize the need to expand HCBS during the coronavirus pandemic and future disasters.
The combination of a PPE shortage, lax regulation, and the dangers that COVID-19 presents in congregate living situations has made communal housing, including nursing homes, group homes, and other institutions, particularly at risk for COVID-19 spread and infection. Moreover, there is the potential for a long-term lack of supplies and a shortage of workers providing HCBS—from direct support workers to home health workers to home care workers. This could, in turn, drive more people with disabilities from their communities and into nursing homes, exacerbating the current crisis.
Additionally, people with disabilities, older adults, and unsheltered populations all face increased rates of institutionalization in nursing homes and other facilities during extreme weather events and disasters. As the 2020 hurricane season draws near, it is important to recognize that attempting to use these institutions to house people during and in the wake of extreme weather events not only fails to center people with disabilities; it also violates their rights to live within their communities while putting them in danger of contracting COVID-19.
Who are America’s direct support workers?
In 2017, 4.5 million workers provided direct care services, including 2.3 million people who provided care to seniors and people with disabilities across home and community-based settings. Among this group, 87 percent of workers are women and 62 percent are people of color. In 2018, health care support worker salaries averaged $28,720. And home care workers make on average $13,300 a year, with more than half receiving support from public assistance programs. Yet the United States has created a situation in which at-risk, low-wage workers need to purchase their own safety equipment to make up for a lack of on-the-job resources. These direct support workers are also in short supply. The United States is currently facing a general shortage of health care workers that is only going to get worse as the country approaches a projected shortage of nearly 450,000 home care workers by 2025.
The pandemic is risking the lives of both workers and people receiving care in congregate facilities as well as home and community settings
Currently, staff who fulfill caregiving roles across a variety of settings—from nursing homes and long-term care facilities to home and community-based settings—perform many of the same or similar services as frontline hospital staff but without the same protections. This means that many of these workers and their patients are not given the same level of access to necessary PPE as hospital personnel, leaving them and their patients vulnerable to infection and cross-contamination. Nursing home facilities across the country—in states such as Arkansas, Ohio, and Pennsylvania, among others—are citing a lack of equipment such as ventilators and an insufficient supply of tests and PPE to illustrate the dire situation faced by those providing care for individuals in congregate settings.
Being forced to live and work in close quarters with limited staffing and lack of PPE is not only affecting nursing homes. As of June 9, nearly 44,000 incarcerated people and more than 9,000 prison employees in the United States had tested positive for the virus, with more than 500 reported deaths between the two populations. In addition, May saw the first COVID-19-related death of a person being held in a U.S. Immigration and Customs Enforcement (ICE) camp. As of June 16, 947 people in ICE custody had tested positive for the virus, and as of May 22, at least five people—two detainees and three staff—had died from COVID-19-related causes across ICE facilities.
While these types of settings have long been criticized for their conditions, extreme weather emergencies and disasters often put those living and working in them in even greater danger. In 2018 during Hurricane Florence, two women died in police custody when being transferred from one facility to another. This is just one of many examples: In New Orleans following Hurricane Katrina, incarcerated individuals were abandoned in a flooded prison, and following Hurricane Irma, 12 people died in a Florida nursing home.
These concerns are contributing momentum to the long-established movement among aging and disability activists to push for increased funding and support for home and community-based services. As the coronavirus crisis illustrates the need for more HCBS services, activists are continuing to demand the right to receive services in their own homes, rather than be institutionalized in nursing homes.
Recommendations to expand HCBS during the coronavirus crisis and beyond
At all levels of government, officials must consider ways to reduce the number of residents in congregate settings for services within the community. This includes the unnecessary confinement of individuals in prisons, group homes, psychiatric institutions, and other settings in which community alternatives are available. These policy changes may involve practices such as early releases and reduced admissions for people in jails, prisons, and institutions; funding for the Money Follows the Person program, which moves people out of nursing homes and back into the community, into their homes, or into the homes of loved ones; procedures that allow for those working on transitioning individuals from nursing homes to the community to access their clients; and the removal of waivers allowing for easier institutionalization of disabled and older people. Legislation such as the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act, for example, centers people with disabilities to develop promising practices and provide technical assistance that keeps both people with disabilities and older adults in their communities.
The next coronavirus stimulus package and related state bills must provide direct service providers, home health providers, and personal care attendants access to the necessary PPE, hazard pay, and testing in order to prevent the spread of infections. Congress should also pass the Coronavirus Relief for Seniors and People with Disabilities Act of 2020, which would provide $15 billion in funding for HCBS and nutritional programs, as well as increased cost-sharing between states and federal Medicaid programs.
As the pandemic continues and as a hurricane season quickly approaches that scientists predict will be more active than normal because of climate change, policymakers must begin to prepare for the effect that concurrent emergency and disaster events will have on individuals and families—particularly those who are at increased risk of being admitted to a congregate setting of some sort. As a starting point, Congress needs to pass the REAADI for Disasters Act and the Disaster Relief Medicaid Act as well as other measures to ensure that disabled and older people can receive their supports and services during extreme weather events, emergencies, and disasters and that technical supports, services, and portable Medicaid are accessible during these events.
It is imperative that people receiving care can remain in their homes and communities, rather than be admitted to crowded, unsafe congregate care settings—particularly during an ongoing pandemic and with more extreme weather and disaster-related risks anticipated in both the near future and over the long term due to climate change. As the Olmstead decision reaches its 21st birthday, it is past time that disabled people’s dreams of “our homes, not nursing homes” are not just a chant at rallies but also a reality.
Valerie Novack is a fellow with the Disability Justice Initiative at the Center for American Progress. Rebecca Cokley is the director of the Disability Justice Initiative at the Center.
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