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

Abstract and Introduction

Abstract

This article considers key ethical, legal, and medical dilemmas arising for people with disabilities in the COVID-19 pandemic. We highlight the limited application of existing frameworks of emergency planning with and for people with disabilities in the COVID-19 pandemic, explore key concerns and issues affecting the health care of people with disabilities (i.e., access to information and clinician–patient communication, nondiscrimination and reasonable accommodations, and rationing of medical goods), and indicate possible solutions. Finally, we suggest clinical and public health policy measures to ensure that people with disabilities are included in the planning of future pandemic-related efforts.

The devastation evoked by the COVID-19 pandemic raises challenging dilemmas in bioethics. It also speaks to social justice issues that have plagued historically marginalized communities in the United States.

Responses to the pandemic must be bound by legal standards, principles of distributive justice, and societal norms of protecting vulnerable populations—core commitments of public health—to ensure that inequities are not exacerbated, and should provide a pathway for improvements to ensure equitable access and treatment in the future.

Introduction

The COVID-19 pandemic has stretched the capacities of health care systems and raised challenging ethical dilemmas. With the unprecedented, rapid spread of infection, COVID-19 testing and care capacities have been overwhelmed. As health care professionals, families, and society grapple in real time with life-or-death decisions regarding equitable access to testing, shortages in personal protective equipment, rationing of medical goods, and clinicians' distress, the need for comprehensive emergency plans and guidelines is more critical than ever. Yet, as the pandemic wreaks havoc globally, its wide-ranging impacts on people with disabilities have received relatively little attention. Many people with disabilities—a large and diverse group encompassing individuals with a range of functional impairments, from mobility limitations to blindness or low vision and intellectual disability—are not necessarily at higher risk for contracting COVID-19. However, some subgroups are, and, more generally, the absence of strong national policies to accommodate the needs of this population significantly disadvantages the ability of many people with disabilities to protect themselves from COVID-19. This neglect may result in many people with disabilities being left behind.

People with disabilities have only recently begun to be recognized by the field of public health as a population with significant health disparities. Notwithstanding its large size—20% of children and 26% of adults in the United States, by estimates of the Centers for Disease Control and Prevention (CDC)[1,2]—this community remains highly marginalized and is underserved and underresearched. Compared with the general public, people with disabilities have less education; more economic, food, housing, and employment insecurity; and less Internet access.[3] Although the rate of chronic medical conditions (e.g., obesity and cardiovascular disease) may be higher among some subgroups (e.g., people with mobility and intellectual disability),[3] the CDC reports that, overall, "adults with disabilities are three times more likely than adults without disabilities to have heart disease, stroke, diabetes or cancer."[4] In addition, studies show that the prevalence of disability, including unmanaged chronic medical conditions, is disproportionately high among racial/ethnic minorities, including American Indian/Alaska Native communities.[5] This puts people with disabilities in double jeopardy for marginalization in routine and preventive health care[5,6] and, as demonstrated with COVID-19, in emergency preparedness and care.

There are only limited data on emergency planning for people with disabilities, but the need for tailored approaches to support this population during emergencies is not new. In the United States, such efforts have been catalyzed by media coverage of 9/11 and Hurricane Katrina, highlighting the failure to evacuate people with disabilities during times of disaster.[7] More recently, during the H1N1 pandemic, the CDC called for recognition of people with mobility and cognitive disabilities as a high-risk group for developing influenza-related complications.[8]

Yet, existing emergency guidelines have limited application to the COVID-19 pandemic. For instance, the recommendation by the CDC and the Federal Emergency Management Agency (FEMA) that people with disabilities respond to disasters such as the H1N1 pandemic by utilizing a "personal support network" comprising several people[8,9] has limited relevance to COVID-19. With stay-at-home and social distancing orders invoked because of the pandemic, the access of some people with disabilities to personal care assistants who provide direct support in their daily lives has been restricted.[10] Although FEMA has in recent years highlighted the responsibilities of local governments to include people with disabilities in the planning, integration, and implementation of emergency programs,[11] consolidated and consistent guidelines are lacking.[12] As states, hospitals, health care systems, and residential settings for people with disabilities move to develop responses to the pandemic, it is critical to explore key issues likely to have an impact on their care. We consider 3 key issues: access to communication and medical information, nondiscrimination and reasonable accommodations, and rationing of medical goods.

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