Justice and Intellectual Disability In A Pandemic

Abstract

ABSTRACT:Much of the discussion of care prioritization during the COVID-19 pandemic has focused on access to high-technology, intensive care under crisis conditions. This is understandable in light of initial fears that widespread triage and rationing measures would become necessary. However, as observations about the interplay between social determinants of health and COVID-19 infection rates and outcomes have become increasingly clear, attention has also been directed to inequalities in health and healthcare in the US. In this paper, we address another less-discussed set of issues: problems of discrimination and injustice involving people with intellectual disabilities confronted by COVID-19 that go beyond those seen in policies governing triage and rationing. After discussing the proper role of quality of life judgments in healthcare, we consider a range of issues relevant to people with intellectual disabilities, including staffing and structures in group-home facilities, the need for adaptive communication, and the role of support persons during care. Addressing some of these issues will require policy changes that may be widely beneficial; adjustments particular to individuals will also need to be evaluated from the perspective of whether they create undue risks. To address these issues, we draw insights from disability anti-discrimination law as it interfaces with the ethics of patient care, especially the distinction between accommodations for individual patients and modifications of policies addressing access to services and healthcare.