NC bill would protect people with disabilities from discriminatory organ donation practices

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CHARLOTTE, N.C. (FOX 46 CHARLOTTE)-  A bill in Raleigh is paving the way to equal access for people with Down Syndrome and advocates say it’s a huge step in the right direction.

If passed into law, House Bill 642 will make it illegal for health care insurers, providers, and donor entities to discriminate against a person who needs an organ donation, based on their disability.

Betsy Boone, a mother of four, has a six-year-old daughter named Kennedy. Kennedy has Down Syndrome. Boone said those with Down Syndrome are heavily discriminated against in the medical field.

“If you have a diagnosis of Down Syndrome, then the medical community ranks her life as less important than others,” said Betsy Boone.

Kennedy is able to do anything she puts her mind to, Boone said it just takes her a little longer than her twin brother, Jacob.

“She had heart surgery. If she had needed a heart transplant, then she wouldn’t have been eligible and that I am so thankful for the family who stepped forward to create the bill,” Boone said.

Kennedy has had two open-heart surgeries. Doctors say about half of babies born with Down Dyndrome have some form of a heart defect, which is why HB 642 is so pertinent. But Boone says lawmakers work towards equality is far from over.

“The other thing that North Carolina State needs to work on is their employment law.”

There are currently laws to help people with down syndrome get a job, but if they are let go, they are not eligible for unemployment.

“You want them to get a job. But yet, if they lose their job, they don’t qualify for the same unemployment rights that anybody else qualifies for,” Boone says.

Donna Beckmann, whose son has Down Syndrome, says any progress is a step in the right direction.

“This is a piece of legislation that is getting us out in front of our legislators. They’re getting to meet people with down syndrome. And they’re getting to hear multiple stories, not just about organ transplants, but about what is really like living this day to day,” Beckmann said.

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