A government agency tasked with advising the president is calling on federal officials to clarify that individuals with developmental disabilities should not be disqualified from receiving life-saving organ transplants.

In a new report, the National Council on Disability found that many organ transplant centers continue to “bar or caution against” placing people with developmental disabilities and other conditions on transplant waiting lists.

Such practices violate federal law and they persist even in the nine states that have specifically outlawed this type of discrimination, the report found.

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“We live in a world where organ denials are based on disability, rather than suitability,” said Neil Romano, chairman of the National Council on Disability. “Receiving an organ to save your life should never be jeopardized because of fears, myths and stereotypes about disability. Especially not with so many federal laws making that practice illegal.”

Importantly, the National Council on Disability report found that in cases where the need for a transplant is unrelated to a person’s disability, their disability “will generally have little or no impact on the likelihood of the transplant being successful.” What’s more, if a person has adequate support, their disability “should also have very limited impact on the ability to adhere to a post-transplant care regimen.”

Beyond receiving organ transplants, the report also highlights concerns that policies of the Organ Procurement and Transplantation Network and the United Network for Organ Sharing, which manage the organ transplant process, don’t properly protect people with disabilities from being pressured into donating their own organs.

The National Council on Disability is now calling on the U.S. Department of Health and Human Services’ Office for Civil Rights and the Department of Justice to issue guidance spelling out that the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 apply to all stages of the organ transplant process.

The agencies should emphasize that it’s a violation of federal law to make assumptions about the quality of life that people with disabilities might experience after a transplant, the council said. In addition, the report indicates that the government should prioritize quick reviews of any organ transplant discrimination claims brought on the basis of disability given the time sensitive nature of this cases.

“We call on HHS OCR to demonstrate leadership by issuing critical guidance in this area,” Romano said. “It simply cannot wait.”

A Justice Department spokesman told Disability Scoop that the agency is “working with HHS OCR to determine what, if any, next steps are appropriate with respect to issuing such guidance.” Meanwhile, the HHS Office for Civil Rights lauded the “exceptional work” of the National Council on Disability and said it was taking the council’s recommendations “under advisement.”

In addition, the civil rights office pointed to its action earlier this year to resolve a discrimination complaint against the University of North Carolina Health Care system. In that case, a doctor allegedly declined to add a patient with intellectual disability to the heart transplant waiting list because of the individual’s disabilities and the fact that the person did not live independently. Under the agreement, UNC Health Care said it would amend the patient’s medical records to say that they were eligible to be considered for a spot on the transplant list.

Three years ago, 30 members of Congress wrote to the HHS Office for Civil Rights calling for guidance on what they called “persistent” organ transplant discrimination affecting people with developmental disabilities.

“No guidance was issued as a result of the 2016 letter to HHS, but guidance from DOJ and HHS should be issued now,” the National Council on Disability report notes.

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