Oregon Commission on Autism Spectrum Disorder

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Discrimination faced by people with disabilities in need of lifesaving care

Needing a lifesaving transplant is truly awful for any child and family. For children with a disability, the challenges are even more immense. Sunshine Bodey knows this all too well, as she faced the tremendous obstacles when her son Lief, 9, who is autistic and non-speaking, needed a lifesaving heart transplant.

While the Americans With Disabilities Act explicitly prevents discrimination in medicine, there is no mechanism for enforcement. This leaves states on the front line of not just ensuring the prevention of the discrimination, but also giving families an effective and time-sensitive path of recourse outside of adjudication. Last June, Oregon joined California, New Jersey, Maryland, and Massachusetts in the fight, and passed legislation to end this discrimination.

Earlier this month, Oregon Governor Kate Brown held a formal “signing ceremony” for Oregon’s HB2839 bill in her office in Salem. The bill, which went into effect this summer, prohibits entities providing health care services, practitioners practicing health care professions and insurers of health care services from, solely on basis that individual who meets eligibility requirements for receipt of organ transplant is disabled, discriminating against individual with respect to practices related to and coverage of organ transplant.

For those who worked on creating legislation and families like Bodey’s, the bill, which passed unanimously, represents a major victory, as it prohibited discrimination against individuals with disabilities in organ transplantation.

Only a handful of states have banned bias in transplants. Please consider passing this information to your contacts across the United States as it is a great example of success, and could generate attention that can be used to help other states pass similar legislation. Oregon State Capitol Building

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