Context: COVID-19 has prompted debates between bioethicists and disability activists over Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care.
Methods: We examine CSCs in 35 states and code how they approach disability, comparing states that have revised their plans to those that have not. We offer ethical and legal analyses evaluating to what extent changes to state policy aligned with disability rights law and ethics during the early pandemic and subsequently, as stakeholder engagement grew.
Findings: While disability rights views were not well represented in CSCs that were not updated or updated early in the pandemic, states that revised their plans later in the pandemic were more aligned with advocate priorities. However, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice.
Conclusions: The disability rights movement’s successes in influencing state triage policy should inform future CSCs and set the stage for further work on how stakeholders influence bioethics policy debates. We offer thoughts for examining bioethics policymaking reflecting the processes by which activists seek policy change and the tension policymakers face between expert delegation and mediating values conflicts.