Disabilityscoop fails to get the real scoop – Disability, organ transplantation and the HHS

On September 14, three representatives of the National Disability Leadership Alliance (NDLA) met with the Health and Human Services (HHS) Division on Transplantation.  Two major concerns were brought to the meeting.

Kelly Buckland, the Executive Director of the National Council on Independent Living (NCIL), was one of the participants and NCIL published a brief report on the meeting on September 19:

On September 14, 2012, NCIL Executive Director Kelly Buckland, along with other representatives of the National Disability Leadership Alliance, a national coalition of consumer-controlled organizations, met with the HHS Division on Transplantation.

NCIL 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.

Also in attendance at the meeting were ASAN President Ari Ne’eman and Not Dead Yet President Diane Coleman. The NDLA representatives urged HHS to “issue strong and unequivocal legal guidance” on these issues. NCIL will continue to advocate strongly against policies that have recently resulted in clear cases of disability discrimination in life or death situations.

In three short paragraphs, the NCIL report informs readers who was at the meeting and exactly what issues were covered.

Earlier today, disabilityscoop, an online publication that describes itself as the “premiere source of developmental disability news,” published an article on the same meeting.

As the title of the article indicates (Advocates Call for End to Transplant Discrimination), the article focuses on the issue of the denial of transplant consideration to people with disabilities, based solely on their disability.  The emphasis is understandable for a publication that focuses on developmental disabilities.  What is not understandable is the total omission of the other concerns brought forth at the meeting regarding increased reports of pressure brought to bear on families by discussing organ donation when a loved one is on life-support.  These situations involve newly-brain injured people of any age (and those under the age of 21 are considered to be developmentally disabled) and people with disabilities of any age dependent on technology to live.

Prior to publication, Ari Ne’eman, head of the Autistic Self Advocacy Network, put Disability Scoop in touch with Not Dead Yet concerning the organ procurement concerns raised at the meeting.  Not Dead Yet provided the publication three letters(1 is here, 2 is here, and 3 will be up soon) we had previously submitted in response to requests for public comment to the Organ Procurement and Transplantation Network.  “Not Dead Yet actually invited me to the meeting to address the organ eligibility issue since ASAN has been active on that front,” Ne’eman says.  “We’re grateful to NDY for taking the lead on the organ procurement issue, which also affects people with developmental disabilities.”

Unfortunately, readers of disabilityscoop will come away with the impression that transplant denial was the only issue covered at the meeting.  That’s incomplete and inaccurate reporting.  The decision to exclude a major part of shared concerns brought forth at the meeting is inexplicable.