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The Autistic Self Advocacy Network, through subcontract with the Disability Rights Education and Defense Fund (DREDF), is part of a team, funded by the National Council on Disability (NCD), to produce a five-report series on bioethics issues and their impacts on people with disabilities. For the report on organ transplants, they are gathering information on organ transplant discrimination, a phenomenon in which people with disabilities – particularly people with intellectual and developmental disabilities – are denied access to medically necessary organ transplants due to prejudiced beliefs about their quality of life.
They are interested in gathering information in California related to this, namely:
Have you heard stories from your members indicating that they or their family members were denied an organ transplant on the basis of disability?
Have you participated in any legal actions involving a person who was denied an organ transplant (or placement on the national waiting list) due to disability?
Neither you nor any of your members will be referred to directly by name, and they will not include any information that could be used to identify you. However, the details of any stories or anecdotes you provide (absent names and identifying information) may be included as part of the final report, which will be a public-facing document.
If you or someone you know has a story to share please email Kelly Israel at ASAN.