The disability community has a history of contention with the government over enforcing federal antidiscrimination mandates.
Clashes have often erupted between the parties. In 1977, disabled activists occupied the San Francisco Department of Health and Human Services (HHS) building for 28 days to protest the delay in enacting regulations to help implement Section 504 of the Rehabilitation Act (the first federal disability antidiscrimination mandate).
In 1990, dozens of activists left their wheelchairs behind, got down on their hands and knees and pulled themselves up the Capitol steps, a demonstration known as “The Capitol Crawl,” in an effort to get Congress to pass the Americans with Disabilities Act (ADA). In 2017, protests against the efforts to repeal Obamacare were rampant.
In 2020, however, disability rights organizations worked together with the federal government to resolve complaints about discriminatory health policies. This collaboration has been effective in ensuring equality for individuals with disabilities, possibly paving the way for new strategies to accomplish social change.
In the wake of the coronavirus pandemic, medical facilities have been forced to update their plans for allocating scarce life-saving resources — specifically, ventilators — in situations where they may be overwhelmed with patients coming through the doors of their ERs. Starting in March, more and more states and hospitals revised their crisis standards of care (“CSC”) guidelines, creating a scoring system for making triage decisions. As the updated guidelines started to surface, disability rights organizations expressed concern over these protocols, filing complaints with the HHS’ Office for Civil Rights, the agency in charge of enforcing federal antidiscrimination law in health policy. They pointed out how these guidelines employed distinctions that are based on life expectancy and perceived quality of life, issues ladened with prejudice and stigma against people with disabilities and older adults. Such decisions would ultimately lead to decisions that would put the lives of members of these groups at low priority for care, a situation that is reminiscent of eugenic ideology which was prominent in the past. The issue was discussed by leading disability scholars who disagreed with more traditional views in the field of bioethics, which for years contemplated criteria for lifeboat scenarios like the one at hand.
On the ground, disability rights organizations have been working together with the Office for Civil Rights to reach resolutions with 11 states whose CSC guidelines were of particular concern. Such collaboration between the federal agency and civil rights organizations such as The Arc of the United States, the Bazelon Center for Mental Health Law, the Autistic Self Advocacy Network and the Disability Rights Education and Defense Fund (DREDF), yielded some unprecedented victories. In recent months, Alabama, Tennessee and Pennsylvania amended their CSC protocols so that they would not create a discriminatory impact on people with disabilities and older adults. On Aug. 20, a new accomplishment materialized when Utah amended its protocol.
Utah’s CSC protocol guarantees that triage decisions will be informed by individualized medical assessments of patients’ medical situations, rather than making categorical decisions based on age or disability. The state, therefore, removed the long-term life expectancy criteria from the list of factors that can be considered for allocation of ventilators. The new amended protocol also ensures that hospitals would not reallocate ventilators brought in by disabled patients themselves. Most importantly, the new Utah protocol has removed resource-intensity and duration of need as criteria for ventilator allocation. This means that the fact that a patient might need to use a ventilator for a longer period of time due to their age or disability will not be held against them.
As in other situations, the individual assessment of the patient’s ability to recover will be the factor to be considered when deciding on rationing of care, not the resources taken to ensure recovery. This specific provision is an important victory over claims by some bioethicists who supported the use of resource intensity as a factor in determining triage, forcing people with disabilities and older adults to the bottom of the list for receiving lifesaving care.
This new resolution in Utah should serve as a wakeup call for other states — namely, Washington, Oklahoma, Connecticut, North Carolina, Oregon, Nebraska and Arizona — that still have complaints pending against their CSC protocols for discriminatory criteria.
As we move further into reopening of universities, schools and businesses, a second wave of COVID-19 patients is on the horizon. To the extent that collaboration between civil society and the government are possible they can ensure equity and appropriate medical care to all.
Dr. Doron Dorfman is an associate professor of law at Syracuse University College of Law specializing in disability law and health law.