The Department of Health and Human Services is mulling the largest update to disability nondiscrimination regulations in decades as the pandemic has highlighted inequities in the medical system.
The HHS Office for Civil Rights said it is issuing a request for information Friday that outlined policies that would aim to improve the care of people with disabilities—including when they need organ transplants, when treatments are no longer seen as beneficial, preventing suicide, and how care is provided when resources are scarce during a disaster.
Hospitals have been overwhelmed during the Covid-19 pandemic, which has led to rationing of care. Health facilities typically rely on crisis standards of care when that happens. That’s led to the Office for Civil Rights investigating and resolving numerous complaints and working with multiple states to prevent discrimination in the care of people with disabilities.
Although the Trump administration is in its final days, disability advocates expect the work to continue on this regulatory initiative. Multiple advocacy groups have made it clear to the Biden transition team that this is a major priority for them. President-elect Joe Biden mentioned the disability community in his acceptance speech, a rare move for a politician.
OCR Director Roger Severino brought up these issues with the Biden transition team and has been “eager” to talk about his disability rights efforts, he said in an interview Friday. There is a draft regulation about the areas in the information request and Severino is going to leave it on his desk “tied up with a bow for my successor.”
“This is an issue that is too important to depend on political party or ideology,” he said.
The OCR said the draft regulation involves Section 504 of the Rehabilitation Act. Section 504 prohibits discrimination on the basis of disability by anyone receiving federal funds.
“The status of your disability should not determine whether you’re offered lifesaving care or not,” Severino said.
Disability rights activists have been working since the mid-1990s to stop doctors from denying organ transplants to people with intellectual and developmental disabilities. OCR Director Roger Severino told Bloomberg Law in a March 2019 interview that he was looking into the issue and discussing guidance to providers.
Both the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 prohibit health-care providers from denying patients access to services and programs based on disability. But neither law explicitly says it’s illegal to refuse to make someone eligible for a transplant.
“Mounting evidence suggests that individuals with disabilities are disproportionately denied access to life-saving organ transplants,” the OCR said in the information request.
The agency wants more information on how many patients are denied placement on the organ transplant list.
One reason some disabled patients may be denied placement is because they have been deemed unable to manage their post-transplant care needs independently, a criterion for getting a transplant. The agency is looking to understand what reasonable modifications could be made to account for support systems.
The National Council on Disability found that there isn’t any uniform procedure for deciding organ transplant eligibility and that, even in states with laws prohibiting discrimination against people with disabilities when it comes to organ transplants, it still exists, it said in a September 2019 report.
The report also found that disabilities unrelated to the need for an organ transplant has “little or no impact on the likelihood that the transplant will be successful.”
A 2008 survey found that 85 percent of pediatric transplant centers sometimes consider neurodevelopmental disability when determining transplant eligibility. A 2006 literature review found that there is little data to support the idea that intellectual or developmental disabilities would constitute a higher risk of poorer outcomes after organ transplantation.
The OCR has resolved multiple complaints around disability discrimination during the Covid-19 pandemic, including ventilator rationing in Alabama and crisis standards of care in Utah , Tennessee, and Pennsylvania. The agency also worked with two states and the Indian Health Service to amend their crisis standards of care to prevent patients without disabilities being prioritized during emergencies like Covid-19.
The standards detail how care is provided when resources are scarce during a disaster, known as crisis standards of care. Many hospitals are using those standards now because they have too many Covid-19 patients and not enough resources for all of them.
The OCR and professional medical organizations such as the National Academy of Medicine and American Medical Association have said health-care providers should assess each person on an individual basis when deciding how to allocate scarce medical resources.
There was a temptation earlier in Covid-19 crisis “when there were debates over rationing of care, whether or not people with disabilities should be deprioritized or flatly excluded because their lives were not worthy of protection,” Severino said Friday.
However, “civil rights laws are not suspended during an emergency. In fact, that’s when we need them the most,” he said.
The agency wants to know what modifications might be necessary for people with disabilities as part of these crisis standard plans, how to protect against providers steering patients into not getting life-sustaining treatment, and what standard should be applied for reallocation of personal ventilators brought by a patient to a hospital.
The agency also is seeking information on what it would cost states to revise their standards, or for the “many of the remaining states that have yet to issue” the standards, what it would cost to issue them.
The agency also is exploring how doctors and hospitals decide to stop or not provide treatment to patients when it wouldn’t benefit them. Such determinations are known as medical futility.
The OCR said it wants to know how stereotypes about quality of life for disabled people may “inappropriately influence decisions about appropriate medical care.”
Research shows that “individuals with disabilities face discrimination of various kinds in the provision of life-saving or life-sustaining care,” the agency said, and a National Council on Disability report found decisions by doctors to withhold life-saving or life-sustaining care are “often driven by subjective quality-of-life judgments that are impermissible under Federal disability rights law.”
Suicide, the 10th leading cause of death in the U.S., also likely disproportionately affects people with disabilities. Agency officials are concerned a double standard may exist for assisted suicide for patients with disabilities. It wants to know how doctors may steer or pressure patients to suicide assistance and how they refer patients to treatment for suicide prevention. Eight states and the District of Columbia have laws around assisted suicide.
In addition, the agency is seeking information on what changes might be needed to ensure that health providers provide aids and services so people with disabilities can communicate with the doctors and nurses, and what additional aids might need to be available.
The OCR also wants to know how value assessment methodologies used by insurers to determine eligibility might “discount the absolute or relative value of a life on the basis of disability.”