AUSTIN — Kathleen Kirwan-Haynie made history in May when she testified in front of Texas House of Representatives on behalf of BH 119, also known as Daniel’s Law.
The Bill sets further protections in place to prevent people with disabilities from being discriminated against in medical settings; one primary example is the new legislation prevents a person’s disability from disqualifying them from being a candidate for an organ transplant.
Kirwan-Haynie said her drive to get the bill passed was because her little brother, Daniel, suffered from kidney failure for 20 years and was never placed on a transplant list because he was also diagnosed with down syndrome.
“As a family we thought this just doesn’t seem right that he can’t at least be tested to see if he is a good candidate to get a transplant,” Kirwan-Haynie said.
Kirwan-Haynie said she felt helpless not being able to do more for her brother. Daniel passed away in 2015, and his family was left with more questions about why his quality of life was less valuable because he was considered disabled.
“Since his passing it’s just continued to really make me think you know that’s not ethical that’s not fair,” Kirwan-Haynie said.
The bill passed and was signed into law in Texas, but the fight is long from over. The National Down Syndrome Society is working with Kirwan-Haynie and State Representatives to get the bill passed on the federal level.
The National Down Syndrome Society’s Director of Government Relations Ashley Helsing said similar bills have passed in other States, but there is a lot more that still needs to be done.
“In addition to what we’re working on state by state, we are also working on this federal legislation so that it doesn’t continue to happen,” Helsing said, “so people with disabilities have access to the organ transplants that they need.”
Helsing said the protections in place on the federal level are just not cutting it. They require people to file complaints and that takes time — time someone may not have.
“These bills are really meant to clarify and require that disability is not taken into consideration when considering organ transplants,” Helsing said.