The Department of Health and Human Services is considering the largest update to disability non-discrimination rules in decades as the pandemic exposed inequalities in the medical system.
The HHS Civil Rights Bureau issued a request for information on Friday setting out guidelines aimed at improving care for people with disabilities – including those in need of organ transplants, when treatments are no longer seen as beneficial, preventing suicide and How do you take care when resources run out during a disaster?
Hospitals were overwhelmed during the Covid-19 pandemic, which has led to supply rationing. In this case, healthcare institutions usually rely on crisis standards. This resulted in the Civil Rights Office investigating and resolving numerous complaints and working with several states to prevent discrimination in the care of people with disabilities.
Despite the Trump administration being in the last few days, advocates of disability expect work on this regulatory initiative to continue. Several stakeholders have made it clear to the Biden transition team that this is an important priority for them. President-elect Joe Biden mentioned the disabled community in his acceptance speech, a rare move for a politician.
OCR Director Roger Severino raised these issues with the Biden transition team and was “excited” to speak about his efforts to address the rights of people with disabilities, he said in an interview on Friday. There is a draft regulation on the areas in the request for information and Severino will leave it on his desk, “tied up with a bow for my successor”.
“This is an issue too important to be dependent on the political party or ideology,” he said.
The OCR said the draft regulation affects Section 504 of the Rehabilitation Act. Section 504 prohibits discrimination on the basis of disability by persons receiving federal funding.
“The status of your disability should not determine whether or not you are offered life-saving care,” said Severino.
Disability rights activists have been working since the mid-1990s to prevent doctors from denying organ transplants to people with intellectual and developmental disabilities. OCR director Roger Severino told Bloomberg Law in an interview in March 2019 that he was looking into the issue and discussing guidelines for providers.
Both the 1973 Rehabilitation Act and the Americans With Disabilities Act 1990 prohibit healthcare providers from denying patients access to services and programs that are based on disabilities. But none of the laws specifically state that it is illegal to refuse to question someone for a transplant.
“There is growing evidence to suggest that people with disabilities are disproportionately denied access to life-saving organ transplants,” the OCR said in the request for information.
The agency would like more information on how many patients are being denied entry on the organ transplant list.
One reason some disabled patients may be denied placement is because they were viewed as unable to independently manage their post-transplant care needs, a criterion for a transplant. The agency would like to know what reasonable changes could be made to accommodate support systems.
The National Disability Council noted that there is no single process for deciding the suitability of organ transplants and that it still exists even in states with laws prohibiting discrimination against people with disabilities in organ transplants, it said in a September 2019 Report.
The report also found that disabilities unrelated to the need for an organ transplant “have 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 a neurodevelopmental disorder when determining eligibility for a transplant. A 2006 literature review found that there was little data to support the assumption that intellectual or developmental disabilities were at greater risk for poorer organ transplant outcomes.
The OCR has resolved several complaints of disability discrimination during the Covid-19 pandemic, including ventilator rationing in Alabama and crisis standards for care in Utah, Tennessee, and Pennsylvania. The agency also worked with two states and the Indian Health Service to change their crisis standards of care and prevent non-disabled patients from having priority in emergencies like Covid-19.
The standards describe in detail how care is provided when resources are scarce during a disaster. This is known as the nursing crisis standard. Many hospitals are now using these standards because they have too many Covid-19 patients and not enough resources for everyone.
The OCR and professional medical organizations like the National Academy of Medicine and the American Medical Association have stated that health care providers should evaluate each person individually when deciding how scarce medical resources to allocate.
There was a temptation earlier in the Covid 19 crisis, “when there were debates about the rationing of care, whether people with disabilities should be disadvantaged or excluded outright because their lives were not worth protecting,” Severino said on Friday.
“However, civil rights laws are not suspended in an emergency. In fact, that’s when we need them most, ”he said.
The agency would like to know what changes might be required for people with disabilities under these crisis standard plans, how to protect themselves from providers who induce patients not to receive life support, and what standard should be used for ventilator reassignment a Patient to hospital.
The agency is also looking for information on what it would cost states to revise their standards or, for the “many of the remaining states that have not yet issued the standards”, what it would cost to issue them.
The agency is also exploring how doctors and hospitals choose to treat or not treat patients when it is not beneficial to them. Such determinations are known as medical futility.
The OCR said it wanted to know how stereotypes about the quality of life of disabled people “can inappropriately influence decisions about adequate medical care”.
Research shows that “people with disabilities face various types of discrimination in providing life-saving or life-sustaining care,” the agency said, and a report from the National Council for the Disabled found decisions by doctors to withhold life-saving or life-sustaining care is “often subjective Judgments on quality of life determined, which are inadmissible according to the federal law on the rights of people with disabilities ”.
Suicide, the tenth leading cause of death in the United States, is also likely to disproportionately affect people with disabilities. Agency officials fear that there could be a double standard for assisted suicide in patients with disabilities. She wants to know how doctors can steer or pressure patients to assist suicide and how they can refer patients to treatment for suicide prevention. Eight states and the District of Columbia have assisted suicide laws.
In addition, the agency is looking for information about what changes might be needed to ensure that health care providers provide tools and services to enable people with disabilities to communicate with doctors and nurses, and what additional resources may need to be available.
The OCR also wants to know how valuation methods used by insurers to determine eligibility can “discount the absolute or relative value of a life due to a disability”.
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