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.
[image_caption]Noah McCourt[/image_caption]
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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The same thing applies to age. Should senior citizens be denied certain procedures because of their age? I am 68 and relatively healthy. I don’t think I should be denied a procedure based on age. On the other hand, if there was only one ventilator available and it was only me or an otherwise healthy twenty something who could get it, I would not have a problem with a policy giving the young priority. Nor do I have a problem with disability figuring into the equation for procedures that, of necessity, must be rationed. Obviously one does not deny medical care when rationing is unnecessary. The real conundrum is when you need to decide between two people with disabilities or a senior and someone with a disability. Sometimes the situation is a no-win one.
I mostly agree with this, but I think in some cases the analogy to battlefield triage is accurate. Specifically in cases where there are shortages, such as with organs for transplants. I have a friend who is a transplant surgeon, and she talks about the tough choices need to be made in prioritizing patients. Some people are deemed too sick or too old. That has to do with the likely success of the procedures, but also in the value of lives. Its an ethical minefield.
Our daughter Rosa (born 11-03-1981) has CF along with being cognitively disabled. For a long time I thought that if the CF got bad enough we would make the hard decision to not seek a transplant. As time progressed she grew emotionally and I checked in with her Doctor at the time and asked the basic question of what conditions and when would a transplant be the order of the day. Flat out the Doctor said that only 50% of those on the list get transplants and we should not put her on the list considering her disability. Her care from that Doctor deteriorated after that. It took us another 2 or 3 years to change Clinics.
It is interesting that the CDC missed the “Homes of all sorts”. At least CMS shut down the visits to nursing home by mid March, but never dealt with staff bringing in the virus and TESTING. It has taken us 6 weeks for the agency where Rosa has been for almost 17 years to begin to make daily contact with phone calls and text and pictures. We knew to ask for it but did not understand the basic psychology underlying the request until she began to show her anger which she hadn’t for a number of years. It was the two of us and no one else and it started on March 16. She had gone to work every day and when she did not do that we were out doing stuff.