In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.
Congressman Mike Honda and Congresswoman Jaime Herrera Beutler have called on the Department of Health and Human Services’ Office of Civil Rights (HHS OCR) to issue guidance on organ transplant discrimination with regards to persons with disabilities. People with an intellectual and/or developmental disability are too often denied life-saving organ transplants for no reason other than their disability.
A 2008 survey of 88 transplant centers found that 85 percent of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility at least some of the time. About 71 percent of heart programs surveyed also applied neurodevelopmental status in determining transplant eligibility.
In the mid-90s, 34-year-old Sandra Jensen was denied a heart-lung transplant because of her Down’s Syndrome. In handing down what was effectively a death sentence, hospital officials advised her, “we do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantation.” She fought the decision which eventually led to California being the first state to pass legislation prohibiting such discrimination and that precedent has since been followed by several other states.
More recently, the parents of Amelia Rivera, a New Jersey girl who was refused a kidney because of her mental disabilities, successfully challenged that decision with the help of an online petition. That case inspired to adopt “Amelia’s Law, similar legislation that banned such discrimination.
However, Reps. Honda and Herrera Beutler have argued for enforcement of federal law that should already cover this issue.
“This is discrimination that has life or death consequences,” Rep. Honda said. “No one should be denied their right to life simply because of an intellectual or a development disability. Such discrimination directly violates the Americans with Disabilities Act and does not abide the American values of fairness and inclusion that we hold so dear as Americans, for all our communities.”
“It’s unacceptable that someone’s intellectual or developmental disability has been a hurdle to them receiving this lifesaving care,” said Congresswoman Jaime Herrera Beutler. “My colleagues and I believe the Department of Health and Human Services must issue clear guidance protecting people with neurological disabilities – in Southwest Washington and around the country – from discrimination in organ transplants.”
"People with disabilities deserve equitable access to all kinds of health care, including organ transplants,” said Ari Ne’eman, President and co-founder of the Autistic Self Advocacy Network. “We're grateful to Reps. Honda and Herrera Beutler for leading on this issue, and hope that HHS OCR will act swiftly to re-affirm the ADA rights of people with disabilities seeking organ transplantation."
A copy of the letter can be found here.