Organ Transplantation and People with Disabilities: A Toolkit for Disabled, Family Members, & Advocates

as shared by our colleagues at Autistic Self Advocacy Network ... http://autisticadvocacy.org/

ASAN Unveils Toolkit for Advocates on Ending Discrimination in Organ Transplantation

ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation. As ASAN found in our 2013 report, 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’s 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. ASAN’s toolkit on organ transplantation is the first of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation. We hope that you find our toolkit useful and distribute it widely. Please send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org.

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