By Kendra J. Muller
COVID-19 has revealed many vulnerabilities in disaster preparedness and response that harm disabled individuals. Disability is often overlooked when it comes to disaster response policies. For example, the 1988 Stafford Act—an amended version of the Disaster Relief Act of 1974 that President Trump recently used to declare a state of emergency—failed to ensure protections for disabled people for many years until it was amended.
Prior to COVID-19, we have seen other crises disproportionately affect disabled people and reveal shortcomings in our policies for emergencies. For example, in the recent California fires, many elderly and disabled individuals were left behind and forgotten in escape plans. We now see erasure compounded as disabled individuals bear a disproportionate burden in dealing with COVID-19 while states rush to grapple with putting policies in place for the pandemic. While I will focus on healthcare in this article, examples of disability bias during crises can be seen in education, careers, transportation, housing, and social stigmas.
It is well documented that disabled people may be more at risk for COVID-19 due to underlying medical conditions such as immunodeficiency or impaired lung, kidney, or heart function. Less discussed is the fact that those who do contract COVID-19 could potentially be denied necessary life-saving care. Rationing supplies and medical services is a necessary precaution, but can create a slippery slope towards discrimination and bias towards all underrepresented groups.
According to law there are very narrow instances in which rationing can take place on the basis of disability. But these narrow and extraordinary circumstances have begun to bleed into broader utilitarian terms as the pandemic rages. Having a disability is medically relevant, but medical conditions do not require that medical equipment should automatically be given to someone else. The pervasive societal stigma that disabled bodies are worth less prevents equal access to healthcare. But disabled and abled individuals alike benefit from—and should receive—life-saving medical help.
Even if a disabled individual never contracts COVID-19, their healthcare needs will still be severely compromised. Those with pre-existing conditions may see their needs pushed to the side as the hospitals and doctors contend against containing the pandemic. The healthcare systems in place are currently overworked and focused on addressing coronavirus. Unfortunately, chronic illnesses, pregnancies, disability-related care, and even temporary illnesses will not conveniently pause for COVID-19. There will still be emergency issues and health procedures that cannot be held off until the pandemic subsides.
While these medical procedures and necessary appointments helped disabled populations in the past to safeguard their disabled bodies, COVID-19 has turned these everyday occurrences into difficult decisions. Those at higher risk of contracting COVID-19 will have to brave a contagious environment to see doctors about their other existing health issues. Disabled individuals—especially those more at risk of dying from COVID-19—face a difficult decision: risk COVID-19 infection by visiting a doctor or allow other health issues to deteriorate by isolating in one's home.
Because of the few policies protecting disabled individuals in emergency situations, hurried, biased solutions appear in their place. In the US, states have grappled with outdated or biased policies that have been largely overlooked until recently. Alabama had a triage policy where people with “developmental and cognitive disabilities” were excluded from receiving care. Fortunately, the US Office of Civil Rights has required that Alabama “fully rescind” the policy. Washington law includes vague language stating that patients with “loss of reserves in energy, physical ability, cognition and general health” may be put to the back of the line. New York issued recommendations on ventilator allocation which disabled New Yorkers have interpreted to mean hospitals can take away privately-owned ventilators for redistribution to other citizens.
When governments lack clear crisis policies regarding life-saving care, they may not have the time or money to formulate an effective approach. This has, in the case of several states, led to reliance on the older policies. While this pandemic revealed instances of pronounced bias in healthcare, it is possible to create inclusive and detailed policies that allow for more equitable disaster response. This will improve healthcare for disabled individuals, not only in times of crisis, but in everyday life.
Medical professionals, working together with disabled individuals, have curated more refined policies. The American Association of People with Disabilities has recommended many responses regarding access to healthcare, temporary Medicaid changes, prohibition of disability discrimination in rationing, voting modifications, and other procedures. Healthcare officials such as the U.S. Department of Health and Human Services have also provided new guidelines to reduce discrimination while combating COVID-19. Additionally, legal decisions have provided guidance to policy. Several lawsuits have been filed to combat inherently discriminatory policies concerning medical exclusion criteria as well as COVID-19 outbreaks in nursing homes and institutions.
A more equitable response to crises is possible if improving disaster preparedness becomes our focus. Two main policy actions regarding disability and crisis response are necessary to ensure crisis protections for disabled individuals. First, disability rights in periods of crisis must be more adequately defined by legislation so that people with disabilities are less vulnerable to discrimination and bias. Second, we should expand healthcare capacity so when the next crisis hits, we will be ready to serve all instead of being left with the moral dilemma of defining who to save.
Kendra Muller is currently a law student at the University of San Diego School of Law, where she is studying international and domestic disability law. She enjoys collaborating across disciplines and combining law, policy, and research to provide comprehensive solutions and ideas to benefit the community. She graduated with a bachelor’s in neuropsychology from Brigham Young University.