This week, the Autistic Self Advocacy Network (ASAN)
released a new policy brief on discrimination against people with intellectual
and developmental disabilities in organ transplantation. In the twenty-three
years since the passage of the Americans with Disabilities Act, people with
disabilities have achieved much progress in securing our rights in a wide
variety of settings. Unfortunately, the field of medical decision-making
remains too often immune from civil rights law. In few places is this as
evident as in the context of organ transplants, where our policy brief outlines
widespread discriminatory practice. Many people with I/DD fail to even make it
to the evaluation process, and those who do are frequently denied access to
transplants on the basis of their disability. Eighteen years after the
landmark Sandra Jensen case in California, it is long past time for action on
this issue.
On Tuesday, ASAN, the National Disability Rights Network and
Not Dead Yet met with senior leadership in the Department of Health and Human
Services to urge the federal government to issue new guidance addressing
discriminatory practices in organ transplantation. Our brief provides
comprehensive documentation on this issue and offers next steps for regulators,
legislators, funders and activists. Produced with the generous support of the
Special Hope Foundation, this will be the first of several policy briefs
produced by ASAN this year examining the issue of access to health care for
people with intellectual and developmental disabilities.
We invite you to download a copy of Organ Transplantation and People
with I/DD: A Review of Research, Policy and Next Steps on our website
by clicking here. Help us spread the word about discrimination
in organ transplants - together, we can achieve equal access for all of us.
Produced with support from the Special Hope Foundation
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