On June 26, the U.S. Department of Health and Human Services Office for Civil Rights issued a press release entitled “OCR Resolves Complaint with Tennessee After it Revises its Triage Plans to Protect Against Disability Discrimination.”
A number of state and national disability groups had complained that Tennessee’s crisis standards of care (CSC) “would unlawfully disqualify individuals with advanced neuromuscular disease, metastatic cancer, traumatic brain injury, dementia, and other disabilities from use of a ventilator in times of scarcity.”
The release describes the key provisions of the revised policy as follows:
- Clarified that resource-intensity and duration of need on the basis of age or disability should not be used as criteria for the allocation or re-allocation of scarce medical resources. This protects patients who require additional treatment resources due to their age or disability from automatically being given a lower priority to receive life-saving care;
- Removed language permitting the use of a patient’s long-term life expectancy as a factor in the allocation and re-allocation of scarce medical resources, instead indicating that providers should consider only risk of imminent mortality;
- Added language stating that reasonable modifications to the use of the state’s primary instrument for assessing likelihood of short-term survival should be made when necessary for accurate use with patients with underlying disabilities. Such reasonable modifications ensure that people with disabilities are evaluated based on their actual mortality risk, not disability-related characteristics unrelated to their likelihood of survival;
- Removed categorical exclusion criteria that prohibited people with disabilities from receiving care on the basis of their diagnosis, and required individualized assessments of patients based on the best available objective medical evidence; and
- Incorporated language stating that hospitals should not re-allocate personal ventilators brought by a patient to an acute care facility to continue pre-existing personal use with respect to a disability. Under this language, long term ventilator users will be protected from having a ventilator they take with them into a hospital setting taken from them to be given to someone else.
The third and fifth point above specifically address concerns that NDY has expressed in our COVID-19 blogs concerning the discriminatory use of the Sequential Organ Failure Assessment (SOFA) score without reasonable modifications based on pre-existing disabilities and chronic conditions, and concerning the risks that people with disabilities who use breathing support could have their ventilators reallocated to other people under triage policies. NDY is gratified that these issues have been resolved in terms of OCR policy.
Reactions from disability rights lawyers have been positive. The Disability Rights Education & Defense Fund issued a release quoting a few of them:
“We’re pleased the state of Tennessee has committed itself to a policy of nondiscrimination during the COVID-19 pandemic,” stressed Claudia Center, Legal Director for the Disability Rights Education & Defense Fund. “Hospitals should treat everyone who can recover and survive, regardless of disability or age.”
“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “We hope that states will revisit their policies in light of today’s resolution.”
“This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”
In addition, Martie Lafferty, Director of the Accessibility Project of the Civil Rights Education and Enforcement Center, one of the complainant groups, stated: “Tennessee’s revised guidelines ensure that Tennesseans with disabilities will have equal access to healthcare during this pandemic and other public health emergencies. In addition, these guidelines– the most comprehensive revision of crisis standards of care to date– are a best practice model for other states.”
Now the challenge will be to see that all crisis standards of care, state and hospital-based, incorporate these OCR standards, not just Tennessee’s; and to see that they are implemented and enforced. Many states and medical facilities have not yet adopted standards consistent with earlier OCR settlements on discrimination in COVID-19 triage policies, even the most basic standards against making “quality of life” judgments. If they had, Michael Hickson would not have been denied treatment in a Texas hospital last month.