As the sun beams through the window on a beautifully warm spring day in May 2020, doctors at the regional medical center are dealing with three new critically ill COVID-19 patients. An otherwise healthy 35-year-old parent of 2 young children. A successful 45-year-old Wall Street executive. A highly decorated 38-year-old Special Olympics athlete with Down Syndrome and who is also a beloved employee at a local retail establishment. All three are now in respiratory distress and will soon require a ventilator to breathe. The hospital’s exhausted ICU doctors turn to look at each other with agony in their eyes and despair on their faces because they know the hospital only has two ventilators available and they must decide which patient will…
We all watch as the number of reported COVID-19 cases rise. We all watch as the number of reported COVID-19 deaths rise too. At some point in all this, although we are not sure when, “flattening the curve” has become a common phrase in our lives. We learn of news accounts from around the world where health care is rationed, patients triaged, and harsh bright line criteria are used to decide who gets treated … and who is left to die. We watch doctors and governors beg for ventilators on national television. We shake our heads and say to ourselves, “they can’t possibly ration healthcare here” and we hope and pray we are right.
In the meantime, states are beginning to develop disaster preparedness plans and doomsday scenarios with respect to dispensing limited healthcare resources as cases continue to climb. Late last week, New Jersey began this process too when it created a bioethics panel to evaluate what to do if the demand for resources exceeds available supply.
Where will people with disabilities be counted in this process? Worse yet: what if they are not?
Over the weekend the United States Department of Health and Human Services (HHS), Office for Civil Rights (OCR) issued a bulletin reminding officials and covered entities, like health care providers, of laws prohibiting discrimination on the basis of race, color, national origin, disability, age, sex, and religion. According to OCR such anti-discrimination provisions apply to the provision of health care services during COVID-19. Accordingly, people with disabilities cannot be denied medical care based on stereotype or a subjective assessment of the quality of a person’s life. Treatment decisions must be made on objective medical criteria only.
However, some State plans indicate, “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” While such provisions are clearly illegal, we cannot allow such explicit or implicit language to find its way into New Jersey’s Bioethics Plan. Our founding partner, Herb Hinkle, argued leading bioethics cases in the courts and served as a consultant to New Jersey’s Bioethics Commission.
It is important for parents, families and disability advocates to be heard – and heard quickly because no one has the luxury of time right now. We must demand policymakers include language in whatever plan is ultimately developed which specifically prohibits the consideration of disability, stereotyped utilitarian assessments, or other discriminatory factors when making difficult heath care decisions. We must say to our policymakers and government officials: “Don’t leave us behind.” “Don’t give up on us.” “Our lives matter.”
Please contact the New Jersey Commissioner of Health, Judith M. Persichilli, at 609-292-7838, Governor Phil Murphy at 609-292-6000, and your State Legislators which can be found at https://www.njleg.state.nj.us/members/legsearch.asp.
While we still can, this is the time for parents and families to raise awareness and to advocate as a community for New Jersey’s most vulnerable.
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Hinkle, Prior & Fischer attorneys are available to speak to your organization or constituents on a wide variety of relevant disability topics. 