Breaking Ground 104 - Tennessee has a New Crisis Care Policy, Thanks to COVID-19

By Brian D. Keller, Esq., Public Policy and Voting Attorney, Disability Rights TN

If you or anyone you know have issues with healthcare rationing, visitor policies, or other issues related to COVID-19, contact DRT at 1-800-324-1660 or at GetHelp@DisabilityRightsTN.org. 

One of the many surprising things about the COVID-19 pandemic was learning that many states, including Tennessee, had hospital policies for emergencies that allowed for discriminating against patients with disabilities. This came to light last spring, when hospitals had to prepare for the worst: what to do if there are too many people in the hospital and not enough capacity to care for them. Who would get care, and who would be turned away? Who should get the hospital’s limited number of ventilators? Of hospital beds? And so on.

Many states had protocols and guidance in place to address these impossible decisions. In Tennessee, such guidance had been drafted in 2016. Alarmingly, it included ways to prioritize patients that would allow discrimination against people with disabilities and other conditions. These types of policies are often referred to as “healthcare rationing.”

Disability advocates across the country jumped into action. Before the end of March, national disability groups and Tennessee’s advocacy community were working together to change the guidance and prevent discrimination during the pandemic. People with disabilities, including Council member Jean-Marie Lawrence (see next article), raised their voices. At least 10 other states filed similar complaints.

By March 28, 2020, Disability Rights Tennessee was working with:

  • The Arc Tennessee,
  • the Tennessee Disability Coalition and Civil Rights Education and Enforcement Center,
  • Epilepsy Foundation of Middle & West Tennessee,
  • National Kidney Foundation, and
  • National Multiple Sclerosis Society

The groups worked together to file a complaint with the Office of Civil Rights for the U.S. Department of Health and Human Services (OCR-HHS). The complaint aimed to change Tennessee’s guidance. In the complaint, DRT argued that Tennessee’s guidance violated the Americans with Disabilities Act, because it recommended that hospitals discriminate against people with disabilities. We recommended that Tennessee use a “disability-neutral” system to decide who should get care in an emergency. A neutral system would not use disability as a reason to not give medical care to someone.

By June 2020, a resolution was negotiated between DRT, Tennessee, and OCR-HHS that resulted in new guidance for Tennessee that is free of discrimination. In fact, the new guidance is now considered a model for the nation for how to provide healthcare in an emergency.

Tennessee’s new guidance includes the following elements to prevent discrimination:

  • Uses a “disability neutral approach” to focus on the person’s ability to survive the emergency, not their disability, as the main measurement for providing medical care;
  • Clarifies that assessment tools used to predict a person’s survival must be modified for people with disabilities; and
  • Prevents a person’s age and life expectancy after treatment from being used to decide who gets life-saving care.
  • The guidance also includes new language that goes above and beyond the original complaint. It says:
  • Hospitals should allow visitors for people with disabilities who need a supporter because of their disability.
  • Hospitals must provide effective communication to patients with disabilities during their care.

All new parts of Tennessee’s guidance are consistent with national best practice standards and the Americans with Disabilities Act.

The changes to Tennessee’s guidance now protect people with disabilities from being treated differently during an emergency. Because of these updates, Tennesseans with disabilities will be afforded equal treatment during a medical crisis in the future. In a strange way, we can thank the pandemic for bringing light to these issues and the opportunity to change them.

Sources:

Visit the Council’s COVID-19 resource page for more easy-to-understand information about hospital policies and your medical rights. The page also has tools to help a person with a disability communicate with medical providers.