Advocacy in Action!
Dawn and Abby at the Capitol!
DSAW advocated for the rights of people with disabilities at the Capitol earlier this month! DSAW’s Executive Director, Dawn Nuoffer, and her daughter Abby spoke directly to the members of the Assembly Committee on Health regarding Assembly Bill 539. They expressed support of the bill from DSAW and other disability organizations in the state like Wisconsin Board for People with Development Disabilities, Survival Coalition, Save IRIS, National Down Syndrome Society, Madison Area Down Syndrome Society, and more.
What is Assembly Bill 539?
Assembly Bill 539 relates to prohibiting discrimination in organ transplantation on the basis of disability. This bill clarifies that doctors, hospitals, transplant centers, and other health care providers are prohibited from denying access to necessary organ transplants solely on the basis of a qualified individual’s disability. Additionally, this bill requires that, when evaluating the likelihood of a transplant’s success, health providers consider the full range of supports available to help a person with a disability manage their post-operative care. The bill also includes a fast-track procedure for challenging discrimination to ensure that people in urgent need of an organ transplant obtain timely resolutions to their claims.
Update: Bill 539 passed both the assembly and senate unanimously! The bill now needs approval from the governor to pass.
Does this type of discrimination happen?
Although federal and state laws prohibit organ transplant discrimination, people with disabilities are often denied equal access to organ transplants because of discriminatory assumptions that their lives are of poorer quality than those of people without disabilities, in addition to misconceptions about the ability of people with disabilities to comply with post-operative care. A study by Stanford University showed that 85 percent of pediatric transplant centers consider intellectual or developmental disabilities when determining eligibility for transplants. Additionally, 71 percent of heart programs also consider disabilities as a factor.
Abby speaking to Assembly Members
Self-Advocate Spotlight: Abby
During the committee meeting, Abby Nuoffer gave a moving appeal. She spoke to her experience as a self-advocate and made sure the assembly members knew that if she needed life-saving surgery, she should have the same access to organ donation as her typically-developing peers. We are so proud of Abby’s great representation of people with Down syndrome and her willingness to use her voice to advocate for herself and others!
