On July 26 of this year we will be celebrating the 30th anniversary of the Americans With Disabilities Act. Despite three decades of improvements on issues pertaining to the rights of persons with disabilities, they continue to face persistent and ongoing discrimination in health care settings.
While the ADA does provide some level of regulation, it has historically been difficult to enforce federal civil rights law in health care related industries, in part due to the lack of technical medical knowledge of individuals and their families. As a result, people with intellectual and developmental disabilities often face little recourse when they experience discrimination in the medical decision-making process.
For example, data suggest that discrimination against people with disabilities in the organ procurement and transplantation process continues to be a persistent problem. A 2008 survey of transplant centers conducted by researchers at Stanford University found that despite the fact that there was little data to support the idea that it would result in poorer health outcomes, 85% of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility. In fact, there are more than 50 published cases of kidney transplants for people with intellectual disabilities in which the success rates and medical adherence rates are comparable to that of the general population.
Concerns about COVID-19 policies
Concerns regarding bias against persons with disabilities have intensified as health care professionals scramble to halt the spread of the COVID-19 virus. In response to a complaint filed by a coalition of disability advocacy organizations, the Office of Civil Rights in the U.S. Department of Health and Human Services issued a statement last month warning medical providers that “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”
Despite this clarification, many states adopted policies that are contrary to this determination. In Alabama, public health officials directed medical providers to “not offer mechanical ventilator support to COVID-19 patients with severe or profound mental retardation” and “traumatic brain injuries.” The state of Washington’s policy encourages doctors to consider a patient’s “Basic Functional status.” Concerns have also been raised regarding the policy issued by the Minnesota Department of Health, which interestingly is based on assessments regarding organ functioning.
Proponents of these practices draw a comparison to battlefield triage in which those with the most serious condition are left behind because medical professionals can save more people by focusing on those with less severe injuries. Unlike a wartime scenario, medical providers are unlikely to encounter a choice of saving the life of one person with a disability versus the lives of many people without disabilities. If there are two people in critical condition the choice is not one of generalized utilitarianism, it is which person should we save and should the presence of an intellectual or cognitive disability and its perceived impact on their quality of life be determining factors in that decision?
Serious ethical questions raised
Denying a patient medical treatment based on the basis of disability raises serious ethical questions that are amplified by the specious methodology used to quantify an abstract concept such as quality of life.
Additionally, making a diagnostic decision based on a pre-existing condition is not equivalent to triage care on a battlefield. It is not doing the most good for the most people. There are a variety of methods that could be used to make medical decisions without discrimination, including prioritizing the treatment of those with medical backgrounds, who could then assist in treating other patients.
We, as a nation, have not spent three decades fighting to advance the rights of people with disabilities simply to roll them back now. We cannot allow self-appointed experts to promote fear in our communities and make recommendations based on stereotypes. We need to utilize the COVID-19 pandemic as an opportunity for growth and create policies that build a more robust and inclusive national public health infrastructure that supports people with disabilities and those without in achieving positive health outcomes and living their best lives.
Noah McCourt is an autistic self-advocate and the founder and executive director of the Minnesota Disability Justice Network. He serves in various policymaking roles, including on the Board of the Center for Dignity in Healthcare for People with Disabilities at the University of Cincinnati.
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