Disability, Ethics, and Health Care in the COVID-19 Pandemic

Maya Sabatello, LLB, PhD; Teresa Blankmeyer Burke, PhD; Katherine E. McDonald, PhD; Paul S. Appelbaum, MD

Disclosures

Am J Public Health. 2020;110(7):1523-1527. 

In This Article

Moving Forward

As we move from the apex of the pandemic—at least in terms of an initial wave—to its aftermath, marginalized groups such as people with disabilities must be included in future emergency preparedness and implementation efforts.

First, data collection during and after this emergency can inform improvements of national and local responses to future pandemics. Currently, scarce data are available about disease, recovery, and mortality rates from COVID-19 among people with disabilities. Following media reports of disproportionately high infection and mortality rates in congregate settings, some states in the United States began recording such data. Although still incomplete, accumulated data indicate that, as of May 21, 2020, residents of long-term-care facilities account for 16% of the total cases across 42 states and 42% of the total deaths across 38 states.[33] In addition, a first international study of electronic medical records of COVID-19–positive patients found higher case-fatality rate among people with intellectual disabilities aged 0 to 17 years and 18 to 74 years compared with other patients with COVID-19.[34]

Yet, it is unknown how many people with disabilities in the United States, with or without chronic underlying conditions associated with COVID-19 such as diabetes, hypertension, lung diseases, and cardiovascular diseases,[35] have been sick, died, or recovered from COVID-19. Given the cyclical interaction between poverty and disabilities (including unmanaged chronic conditions[5]) and reports of higher mortality rates from COVID-19 in impoverished neighborhoods and among racial/ethnic minorities,[35,36] it is further likely that the infection and death toll in the disability community will be high. Collecting and analyzing local and national data that include documented underlying conditions and disability status, aggregated data from treatment decisions, and accurate recording of cause of death (a practice that has been previously found to be compromised with regard to people with intellectual and developmental disabilities who died from pneumonia[37]) will allow for developing equitable strategies for health care allocation in future health crises that are supported broadly by multiple constituencies, including those with disabilities.

Second, the need for identifying short- and long-term remedies (i.e., treatment and vaccination) is dire. Fair allocation is similarly necessary. Distributive justice and the societal value of protecting vulnerable populations requires that, after protecting front-line health care and service providers,[26] those who are most vulnerable to COVID-19 come next. Although disability status alone would not qualify, rates of chronic medical conditions (e.g., diabetes, cardiovascular disease) associated with worse outcomes of COVID-19 are higher among this population.[4,5] As people with disabilities are more likely to be insured through public sources,[38] state and national governments must ensure that such high-risk individuals, including those who rely on personal care assistants for whom physical distancing is difficult,[10] have access to critical COVID-19 interventions.

Finally, the unique vulnerability of people with disabilities in group homes and residential facilities, psychiatric institutions, nursing homes, and prisons should also be prioritized. Such settings have been shown to be "ground zero" in the COVID-19 pandemic, especially nursing homes with high occupancy of Black/African American and Latino residents.[39] The latter findings also highlight the impact of compounded health disparities: individuals (including seniors) from racial/ethnic minorities needing long-term care are more likely than Whites to reside in nursing homes that are overcrowded,[39] underfunded, understaffed, and with poorer quality of care.[40] The limited and inconsistent guidelines in such facilities regarding visitations, staff screening, and personal protective equipment,[33] and their (in)ability to respond appropriately to COVID-19 is a result of systemic issues that need to be addressed. Future preparedness efforts must focus on increased funding to residential facilities and development of policies to mitigate risks. These include ensuring access to testing, separation of COVID-19 patients from other residents, provision of personal protective equipment for direct care staff, and improved training and support to ensure safe and high-quality implementation of emergency procedures.

The devastation evoked by this pandemic raises challenging bioethical dilemmas that speak to social justice issues that have plagued historically marginalized communities in the United States. The lack of preparedness in providing accessible COVID-19 information, the delayed consideration of the unique health care needs of people with disabilities during the pandemic, and biased policies about allocation of medical goods are reflective of long-term neglect of this population in health care and in society. The pandemic also brings to the fore the dire impacts of compounded health disparities on health outcomes: although the impacts of health disparities are relevant for people with disabilities, as a group, these impacts are especially alarming, and disproportionally high, among people with disabilities from racial and ethnic minorities, including American Indian/Alaska Native communities. Responses to this pandemic should not exacerbate inequities faced by people with disabilities.

There is an urgent need for developing and implementing immediate measures to address the challenges. Clear guidelines to ensure accurate and comprehensive data recording are essential to inform our next steps. Enhanced consideration of the needs of this large community during the pandemic is necessary to ensure equitable access and treatment in the future. People with disabilities are equally valuable members of our society. Responses to the COVID-19 pandemic should not leave them behind.

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