We’re All in This Together: Protecting Individuals with Complex Health Needs During COVID-19

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As the COVID-19 public health crisis continues to unfold, state governments, health officials and health care providers have risen to the occasion to ensure that state residents can get the critical care they need. Emergency protocols and policies are swiftly being put into place to make it easier to deliver care more quickly, as well as to effectively prioritize the many complex tasks at hand to minimize harmful impacts. While these policies are intended to ensure that life-saving testing, treatment and other services are there for those who need it, one unintended consequence has emerged – the potential for individuals with complex health and social needs (including people with disabilities, and many older adults and people of color) to be deprioritized when difficult care decisions are being made.

Over the past two weeks, disability advocates in several states filed suits against their state Departments of Health, alleging that their medical triage or emergency-preparedness guidelines were written in such a way that they suggested individuals with complex health and social needs were less deserving of life-saving treatment. One group filed suit because a state’s emergency plan explicitly stated certain individuals with intellectual and developmental disabilities should not be provided with ventilators, including individuals with dementia and traumatic brain injury. Other state plans direct providers to prioritize patients who are viewed as more likely to survive their immediate illness. For example, an individual with an underlying respiratory condition may be denied a ventilator out of the belief that they are less likely to survive than someone without a respiratory condition. These types of decisions have racial justice and equity implications, as individuals and communities who have long been disproportionately impacted by structural racism and poverty are more likely to be in poor health, and therefore have “underlying conditions” that may cause them to be deprioritized at this time.

In a welcome development, the Department of Health and Human Services’ Office of Civil Rights (OCR) provided a swift response to these lawsuits, announcing it was launching several investigations and published a bulletin on March 28 stating 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 or age.” In a press release, the director of OCR, Roger Severino, said, “our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism.”

Indeed, several federal civil rights laws protect individuals with disabilities from discrimination, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act (Section 1557). The ADA and Section 1557 specifically protect these individuals from discrimination by health care providers and the health care system. And legal scholars agree that while medical triage and rationing decisions take a patient’s health status into account as a matter of necessity, using disability as a blanket disqualifying factor is discriminatory and illegal.

While the OCR bulletin is certainly a step in the right direction, more needs to be done to ensure that those with complex health and social needs aren’t disproportionately deprioritized when it comes to receiving lifesaving treatment. For example, while Congress debates a fourth round of emergency response legislation to the COVID-19 crisis, it should add language requiring the enforcement of civil rights laws during national emergencies, as well as language requiring federal agencies to issue regulations or national guidance on how to draft nondiscriminatory emergency preparedness plans. Additionally, advocates can play a role in elevating these issues with their state and pushing for revisions to the state’s emergency plan. Although medical triage always involves difficult decision-making, emergency guidelines should nevertheless be written in such a way that they don’t discriminate against or disparately impact people with disabilities, older adults, people of color, LGBTQ+ people and others.

This unprecedented public health crisis is testing our society’s commitment to our civil rights statutes in urgent and troubling new ways, making adherence to our laws all the more vital. The health advocacy community must work together to ensure our nation’s civil rights laws remain strong and meaningful, even during this time of national emergency.