“All lives have value:” Gov. Kay Ivey signs groundbreaking Exton’s Law sponsored by Rep. Debbie Wood
Published 8:00 am Saturday, August 5, 2023
Exton’s law has officially been signed into law by Governor Kay Ivey. On Thursday, Exton Black, his mother, Savannah Black, and Representative Debbie Wood watched on as four years of hard work finally paid off.
The law adds protections to individuals with disabilities when being reviewed for an organ transplant waiting list. With this law, individuals have the right to make a civil case of discrimination.
“It was one of my best days in Montgomery,” Wood said.
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“This law tells me that Alabama is just going in the right direction,” Black said. “Because discrimination laws are so essential, and especially at the state level, because they create such a uniform and consistent framework for ensuring fairness and equality.”
The bill was first drafted in 2019 and did not pass through the Senate. Wood and Black returned to the drawing board and had the bill redrafted.
“Sometimes, to get it right, it takes a little more time,” Wood said. “ … So we’re there, and this family is validated for the work that they’ve done. This mother is incredible.”
Black’s son Exton has Down Syndrome, has a trach and is ventilator-dependent. Black said due to Exton being a medically complex child, it is likely that he will need an organ transplant in his lifetime.
“All lives have value, and everyone deserves a fair chance,” Black said. “So this is just leveling the playing field.”
The Americans with Disabilities Act protects individuals with disabilities from discrimination. However, in Alabama, in order to be considered for medical review for an organ transplant, patients need a physician’s referral.
According to Black, this is the step in the process where individuals with disabilities often experience discrimination. Some physicians may pass over them under the assumption that they cannot handle post-operative care.
“There should never be an obstacle, because persons with disabilities should have the same rights,” Wood said.
Wood and Black have been working on the bill for the past four years. They worked with hospital administration and a justice organization in Birmingham to fine-tune the bill’s language.
Senator Randy Price, who serves Lee County where the Black family lives, and Senator Tim Melson, Chairman of the Health Committee, also helped sponsor the bill. Melson is an organ transplant recipient and gave the bill his full support.
Wood said she first met the family while campaigning.
“Their story just stuck with me,” Wood said. “What all you go through when you have a special needs child, how important they become to you, and then the obstacles that you have to go through to ensure that they receive the same benefits as someone who’s not disabled.”
Throughout the process, Black said she met many families of individuals and children with disabilities who did not have laws in place to protect their rights. She said she wanted the bill passed as much for her friends and family as she did for her own son.
“As a mom, it just made me really proud that the state of Alabama officially signed the law, and it will protect all individuals with a physical or intellectual disability from being denied an organ transplant,” Black said. “And it takes away the subjective judgments on the value of a life of someone that has a disability.”