There is an unfortunate story that people with intellectual disabilities know too well.

Too many medical professionals think of them in terms of “function” or “dysfunction.”

Lily Parra, for example, is 4 months old and needs a heart. But there was a small amount of fluid on her brain that might lead to disability, and she was taken off the list.

In an Op-Ed in the Washington Post last week, Tim Shriver, the chairman of the Special Olympics, had a thing or two to say about this story, and so do we.

Barriers to lifesaving care

According to a 2013 report by the Special Hope Foundations’ grantee The Autism Self Advocacy Network (ASAN), baby Lily is not alone. When people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care.

Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority.

ASAN responded to this discriminatory practice, and with support from The Special Hope Foundation, prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.

The  toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.

  • The “Know Your Rights” guide provides people with disabilities and their families with information on existing laws and policies that may protect them from discrimination, and information on who to contact if they experience discrimination.
  • The Guide for Advocates provides information on ways that advocates can help fight organ transplantation discrimination on a wider basis, such as through legislative advocacy and outreach to the medical community.
  • The Model Legislation on organ transplant discrimination provides an example of effective anti-discrimination legislation that advocates can propose to their state legislatures.
  • The Guide for Clinicians and Checklist of available supports and services gives doctors and other health professionals concrete advice on how to serve people with disabilities who may need an organ transplant.

Learn more about the toolkit here.

“Doctors don’t know that intellectual disability does not mean a low quality of life,” Tim Shriver said in his op-ed, “It’s just a challenge — and one I have seen overcome countless times.”

“Their narrow thinking fails to see or comprehend the full range of human gifts — with potentially tragic results for families such as Lily’s.”

Sign the Parra family’s Change.og petition.

Read Tim Shriver’s Op-ed here.

The Special Hope Foundation’s Vision Statement

We believe that every human being has the right to be treated with dignity. Our current healthcare system provides inadequate consideration for the needs of adults with developmental disabilities, and to neglect this population is in sharp contrast to accepted medical and ethical standards. However, we are confident that this injustice is both definable and surmountable with the result that every adult with a developmental disability will have access to appropriate healthcare options.

Our Mission Statement

The mission of the Special Hope Foundation is to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.