August 20, 2020
OCR Resolves Complaint with Utah After it Revised Crisis Standards of Care to Protect Against Age and Disability Discrimination
Today, the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) is announcing it has reached an early case resolution with the state of Utah after it revised its crisis standards of care ("CSC") guidelines to ensure that such criteria do not discriminate against persons on the basis of age and disability. This is OCR's seventh resolution regarding discrimination concerns during COVID-19.
OCR enforces a number of federal antidiscrimination laws, including Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Age Discrimination Act of 1975, Title II of the Americans with Disabilities Act, Section 1557 of the Patient Protection and Affordable Care Act, and conscience and religious freedom laws.
OCR received a complaint from the Disability Law Center alleging that provisions of the 2018 Utah CSC guidelines and its 2020 Annex discriminate based on disability. The complaint alleges that Utah's guidelines unlawfully disqualify persons with advanced neuromuscular disease, dementia, Cystic Fibrosis, and other disabilities requiring assistance with daily living from receiving lifesaving care during a public health emergency. The complaint also alleges that guidelines rely on assessment tools that deprioritize people with disabilities for conditions unrelated to their ability to survive Covid-19.
The Early Complaint Resolution (ECR) process offers a mechanism for OCR to provide technical assistance, including compliance advice and best practices, to entities that have been the subject of civil rights complaints. ECR is a voluntary, forward-looking, process where OCR mediates quick, efficient, and effective resolutions of disputes to the satisfaction of all the parties without determining legal liability. After OCR provided technical assistance to Utah under the ECR process, the state chose to update its CSC plan to:
- Remove prior 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, and instruct providers to remove such factors from existing provider CSC plans;
- Remove categorical exclusion criteria on the basis of age, disability, and functional impairment, instead requiring an individualized assessment based on the best available objective medical evidence;
- Rescind resource-intensity and duration of need as criteria for the allocation or re-allocation of scarce medical resources, and instruct providers to remove such factors from existing provider CSC plans. This protects patients who require additional treatment resources due to their age or disability from being given a lower priority to receive life-saving care due to such need;
- Add 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;
- Incorporate new protections against providers "steering" patients into agreeing to the withdrawal or withholding of life-sustaining treatment, clarifying that patients may not be subject to pressure to make particular advanced care planning decisions, must be given information on the full scope of available alternatives, and that providers may not impose blanket "Do Not Resuscitate" policies for reasons of resource constraint, or require patients to consent to a particular advanced care planning decision in order to continue to receive services from a facility; and
- Incorporate 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.
OCR is closing the complaint as satisfactorily resolved without any finding of liability.
Roger Severino, OCR Director said, "We've been pleased by the cooperation of states we have approached with civil rights concerns regarding their policies and Utah's plan is the best yet." Severino concluded, "Older persons and persons with disabilities have equal worth and dignity and should not be deprioritized for health care based on stereotypes and other impermissible factors."
Utah submitted the following statement to OCR for inclusion in this announcement:
"I'm grateful to the Utah doctors, hospital leaders, medical ethicists, and others who helped us develop important standards for caring for people in a crisis. I don't anticipate having to use these standards, but it's important to be prepared, especially so we can care for those who are most vulnerable when resources are limited," said Governor Gary Herbert.
To see Utah's revised guidelines please visit: https://coronavirus-download.utah.gov/Health/Utah-Crisis-Standards-of-Care-Guidelines-v7-08132020.pdf.
For more information about how OCR is protecting civil rights during COVID-19, please visit https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/index.html.
To learn more about non-discrimination on the basis of sex, race, color, national origin, age, and disability; conscience and religious freedom; and health information privacy laws, and to file a complaint with OCR, please visit www.hhs.gov/ocr.