Disability Advocacy Groups Push for 'Strong, Unequivocal' Legal Guidance on Organ Transplants

In response to two major stories involving people with disabilities being denied organ transplants, in part due to their disabilities, a national coalition of fourteen different advocacy groups is pushing for change.

The National Disability Leadership Alliance met with senior staff at the U.S. Department of Health and Human Services, Division of Transplantation, to urge HHS to issue legal guidance to transplant facilities regarding their responsibilities under the Americans with Disabilities Act.

The National Disability Leadership Alliance (NDLA) is comprised of fourteen advocacy organizations that are run by and for people with disabilities At the meeting, NDLA was represented by Ari Ne’eman, president of Autistic Self-Advocacy Network; Kelly Buckland, Executive Director of the National Council on Independent Living; and Diane Coleman, president of Not Dead Yet. The group discussed organ procurement and transplantation policies, and how they impact people with disabilities of all kinds.

Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. NDLA’s representatives raised the recent cases of Amelia Rivera and Paul Corby, individuals with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue “strong and unequivocal legal guidance to prevent such acts of discrimination,” according to ASAN’s website.

“This is clearly a very grave civil rights issue,” Mr. Ne’eman said to Disability Scoop. “We’re talking about discrimination that is grounded in no medical justification. This is based on subjective decision making about quality of life,” said Mr. Ne’eman, who is also a member of the National Council on Disability, where he chairs the Council’s Policy & Program Evaluation Committee.

The National Council for Independent Living stated on its website that the organization “stands firmly against discrimination in organ transplants, which are often denied based solely on disability, and discrimination in organ procurement practices, which may soon allow organ procurement to be discussed prior to the decision to withdraw life-sustaining treatment from some persons with disabilities.”

This brings up a major point of concern: discrimination can happen all along the chain of organ donation. Not only is there a potential for discrimination against those with disabilities when it comes to receiving an organ transplant, but there can be problems regarding decisions to withdraw life-sustaining treatment from persons with disabilities, and the potential for undue pressure when discussing organ donation.

Diane Coleman, J.D., the CEO of Not Dead Yet, wrote in a policy statement, “The majority of our concerns focus on the potentially harmful impact of organ procurement activities on people with disabilities who depend on a ventilator due to a new injury or an exacerbation in their disabling condition.”

The concerns regarding organ transplants and discrimination against people with disabilities are many, and complex. I applaud the efforts of the NDLA, its member organizations, and in particular Ari Ne’eman, Diane Coleman, and Kelly Buckland–three very smart, strong, articulate people. I hope Division of Transplantation Director Richard Durbin is listening to them.

Special Note: Are you a registered organ donor? You can learn more and register as an organ and tissue donor at

Read more from Joslyn at Babble Pets and at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and Twitter.

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