Doctors and transplant organizations could soon be barred from discriminating against recipients based on any mental or physical disabilities, thanks to legislation filed by State Senator Jason Barickman (R-Bloomington).
“We need to ensure that people with Down syndrome and other disabilities are given access to the life-saving procedures they need,” said Barickman. “This legislation would help to make sure that people with disabilities receive equal consideration for organ transplants.”
Senate Bill 500, filed by Senator Barickman, would amend the Illinois Anatomical Gift Act to update how organ donations are determined. Doctors, hospitals, and organ procurement organizations would not be allowed to determine that a potential recipient is ineligible to receive an organ donation based on the individual’s physical or mental disabilities.
The legislation was inspired by a constituent, Kaylee Short, and her young son who was diagnosed with Down syndrome.
“When Wesley was diagnosed with Down syndrome at birth I was completely overwhelmed with emotions. It was immediately obvious to me that certain rights and accomplishments that come more freely to most of us would not come as fairly and easily to him. I’ve lived in Illinois my entire life, born and raised. Realizing that discrimination could happen in our state to individuals with disabilities just like my son, who are in need of organ transplants to survive, broke my heart. These kids and adults are worthy of every opportunity we are, and most importantly worthy of life. They work twice as hard at everything they do. The idea that they should have to also work harder at fair opportunity to organ transplants is disheartening,” said Short. “I am so grateful that is one less worry that so many special needs parents in Illinois will have to face. Everyone knows Wesley will likely always need us, what I hope people realize is we will always need him more.”
Kaylee Short connected Barickman with Lindsay Robertson, a volunteer advocate with the National Down Syndrome Society, who drafted the legislation.
“I feel relieved and am so grateful that Senator Barickman and the committee were so supportive of this bill,” said Robertson. “No one should be discriminated against, everyone deserves the ability to receive an organ transplant if they need one. This is an important protection that our community now has.”
Robertson testified remotely on behalf of the legislation during the Illinois Senate Judiciary Committee’s meeting on March 16th. The legislation passed the committee unanimously and is now headed to the full Senate for a vote.