Sunshine Bodey claims her son was denied a life-saving heart transplant at their local Oregon hospital because of his autism, and he would have died if she and her family had not been able to find a hospital in California willing to operate on him, according to an op-ed in The Oregonian.
Ms. Bodey writes the hospital told her no facility would ever agree to operate on her son, who is unable to communicate verbally and has sensory and motor difficulties. However, Palo Alto, Calif.-based Lucile Packard Children's Hospital said they would accept him as a patient though it was unclear if he would be able to survive the flight from Oregon to California. After multiple open heart surgeries, he eventually underwent a heart transplant and recovered successfully.
Ms. Bodey argues that although her son's case had a happy ending, it is indicative of problems that many autistic and other developmentally disabled patients face when they are in need of organ transplants.
"Transplant programs are given wide latitude in deciding whether to take a patient's disability into account. A 2008 study by the Stanford Center for Biomedical Ethics found that 43 percent of the 50 pediatric heart, liver and kidney transplant programs surveyed always or usually considered neurodevelopmental delays, while 39 percent rarely or never did," Ms. Bodey wrote in The Oregonian.
While the American with Disabilities Act created rules outlawing discrimination, Ms. Bodey said states must focus more on enforcing these rules.