In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. A number of posts have provided details on discrimination in organ transplantation.
Denying organ transplants to people with intellectual and neurodevelopmental disabilities like Down syndrome or autism is common in the United States, even though it is illegal under the Americans with Disabilities Act.
According to a widely cited 2008 study, 44 percent of organ transplant centers said they wouldn't add a child with some level of neurodevelopmental disability to the organ transplant list. Eighty-five percent might consider the disability as a factor in deciding whether to list the child.
In Montana, a bill called "Griffin's Law" would address the problem.
If the bill passes the state House and is signed by the governor, Montana would become the 17th state to ban such discrimination. Similar bills are pending in seven other states and in Congress. Some experts doubt that such laws will be enforceable enough to eliminate discrimination.
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Sam Crane, legal director of the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said some bills — including Montana's — address the concern about post-transplant care. They would ban transplant centers from basing their decisions solely on people's ability to carry out post-transplant requirements and require investigations into sources of support to help patients comply.
Crane said physicians could still come up with pretexts to avoid adding disabled people to the transplant list if they believe people without disabilities would benefit more from receiving organs.
"It's very difficult to prove discrimination in that sort of situation," she said.
A similar nondiscrimination bill has been introduced in the U.S. House, but Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the Americans with Disabilities Act and other federal laws already prohibit that kind of discrimination, making federal legislation unnecessary. Gallegos said states could also enact stricter requirements than the federal government's and fit them to their specific medical systems.
