By Sean Slone, Senior Policy Analyst
“Our civil rights laws stand no matter what, including during disasters or emergencies, and it is critical that we work together to ensure equity in all that we do for all patients,” said Health and Human Services Secretary Xavier Becerra in a statement.
This statement followed a string of complaints filed in early 2020 against a number of states alleging that their respective guidelines illegally discriminated against persons with disabilities. For example, the Alabama Disabilities Advocacy Program and others raised concerns that a state plan governing critical care allocation during the pandemic ordered hospitals to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia” or “severe traumatic brain injury.” These concerns formed the basis for a formal complaint with the U.S. Department of Health and Human Services, Office for Civil Rights (HHS/OCR). Similar complaints were filed against other states.
Rather than negate these complaints, Alabama, North Carolina, Pennsylvania, Tennessee and Utah entered settlement agreements with HHS/OCR. In addition, OCR resolved complaints with the North Texas Mass Critical Care Guidelines Task Force, the Southwest Texas Regional Advisory Council and the Indian Health Service to revise each entity’s crisis standards of care guidelines to reflect best practices for serving individuals with disabilities. OCR also resolved a complaint in Connecticut involving visitation rights for persons with disabilities in hospitals who require support personnel.
Consistent with these settlement agreements applicable to particular states, OCR recently issued guidance to healthcare providers making it clear that civil rights protections for people with disabilities continue to have the force of law even when the nation is in a public health emergency.
“During a public health emergency like the COVID-19 pandemic, biases and stereotypes may impact decision-making when hospitals and other providers are faced with scarce resources,” said OCR Director Lisa J. Pino. “OCR will continue our robust enforcement of federal civil rights laws that protect people with disabilities from discrimination, including when Crisis Standards of Care are in effect.”
Crisis Standards of Care are state rules for triaging scarce resources that hospitals are required to follow. The standards vary widely by state and some plans give hospitals substantial discretion.
Under the OCR guidance, persons with disabilities must be provided an opportunity to participate in, or benefit from, all healthcare and health-related services afforded to others, including COVID-19 testing, medical supplies, medication, hospitalization, long-term care, intensive treatments and critical care, including oxygen therapy and ventilators.
The guidance reflects concerns that biases and stereotyping may have impacted decision-making when hospitals and other healthcare providers have allocated scarce resources during the COVID-19 pandemic. The new guidance updates a previous issuance in March 2020. Any healthcare program or activity receiving federal financial assistance from HHS is subject to federal civil rights protections. To be in compliance, such healthcare entities must consider a specific patient’s ability to benefit from the treatment sought, free from bias about disability.
The new guidance is based on protections articulated in federal regulations implementing Section 504 of the Rehabilitation Act of 1973 and Section 1557 of the Affordable Care Act and is part of continuing HHS efforts to protect at-risk populations, advance equity and address disparities in healthcare provision during the pandemic.
The guidance was issued in the form of frequently asked questions (FAQs). Numbers 5, 6 and 7 of the FAQs outline scenarios that a healthcare provider might consider in the allocation of resources:
- Whether an individual with a disability or an individual who is likely to have a disability after treatment will have a lower quality of life or relative worth to society compared with an individual without a disability who also requires treatment.
- Whether they can provide healthcare or deny a resource to an individual with a disability who has COVID-19 if it may require more of the resource than treating individuals without disabilities for COVID-19.
- Whether they can consider that an individual with a disability may not live as long as an individual without a disability after treatment.
The answer in each case is “No.”
The guidance also addresses how civil rights obligations apply to visitation policies and vaccination, testing and contact tracing programs.
Disability rights advocates say COVID-19 has exacerbated existing disparities faced by people with disabilities. The guidance is something they have argued for since the earliest days of the pandemic, said Maria Town, president and chief executive officer of the American Association of People with Disabilities.
“While we wish this guidance would have been issued sooner, the FAQs released by the department will provide health care providers and patients with disabilities alike with vital information to ensure that no person with a disability is denied necessary care during a crisis, a fear that continues to be all too real as we enter the third year of the pandemic,” she said.