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

Communication and Medical Information

Although the scientific understanding of COVID-19 is limited, communicating the risks, measures of prevention, and treatment options before, during, and after the emergency are key to slowing down a pandemic and improving health outcomes. However, there are reasons to believe that people with some disabilities have been underinformed about COVID-19 and its ramifications. Consider the following: information conveyed via charts and graphs is inaccessible for blind and low-vision individuals and incomprehensible for people with intellectual disability (and others) if not provided in plain language. Similarly, news briefings conducted without captioning or qualified American Sign Language interpreters preclude deaf and hard-of-hearing individuals from being informed.

As underfunded organizations of and for people with disabilities are forced to replace governmental functions and scramble to develop accessible information, additional challenges have emerged. The reliance on drive-through COVID-19 testing facilities when public transportation is restricted makes it difficult for blind and low-vision individuals and people with developmental disabilities to be tested and seek care. The transition to telehealth is appropriate in a pandemic but raises other challenges. For instance, automatic answering systems with multiple options are difficult, even impossible to use for many people with intellectual disability, deaf and hard-of-hearing individuals, or those with physical or speech-related disabilities that impede navigating these communication systems. Telehealth options may also be challenging for people with psychiatric conditions who, because of stigma, may conceal their condition and treatment from family members[13] or who cannot conduct confidential clinician–patient conversations while shelter-in orders are in effect.

These examples are not intended to minimize the importance of the measures taken to facilitate care in the pandemic. However, they highlight significant informational disadvantages that people with disabilities may experience regarding COVID-19—from prevention (e.g., social distancing) to symptom identification and treatment recommendations. And, while clinicians are often expected to fill patients' informational gaps, their ability to discharge this responsibility during a pandemic is limited. This difficulty is likely also felt "on the ground." In a recent survey of (mostly) people with intellectual and mobility disabilities (n = 2469), only 15% ranked health care providers/health systems as the most important source of information about COVID-19.[10]

Collaborations with and budgetary allocations for organizations of people with disabilities are critical for promoting high-quality, effective patient care in the pandemic. Currently, such organizations have been impelled to engage in public health activities for which they are not fully prepared or funded. Yet, as organizations with unique expertise in the needs of the populations they serve, they are invaluable players in ensuring better responses to pandemics. Such organizations can assist in developing disability-accessible information about COVID-19 (and future pandemics), admission procedures, and treatment options for a highly diverse population of people with disabilities. Federal, state, and local agencies must also utilize multimodal communication strategies (e.g., text, e-mails, radio, television) to maximize the number of individuals who are informed about the pandemic.[12]

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