Katie Beckett Program now open to TN families of children with disabilities

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(WJHL) — Tennessee families of children with disabilities or complex medical needs will now have access to a new health care program.

Monday, these parents can now apply to the Katie Beckett Program which just received federal approval this month.

Kristen Gallant spoke with local advocates for the program since the beginning and who are now glad to be able to finally apply.

Tennessee was the only state to not have a Katie Beckett Law in place.

Now thousands of families across the state can start the application process for the program.

“It’s pretty surreal,” said Mallorie Hatcher, who’s been an advocate for the Katie Beckett waiver since the beginning. “We didn’t know if it was going to happen this year or not.”

Hatcher is the mother of seven-year-old Nolan who has a rare chromosome disorder.

“He has a small duplication on his seventeenth chromosome,” she explained. “Because of that he’s had, you know a lot of hospitalizations, and doctors appointments, and you know some complex medical needs throughout his life.”

Some of those needs aren’t covered by private insurance.

Like Hatcher, the Ledford family has advocated for their son Noah and other children who don’t qualify for Medicaid due to their parents’ or gradians’ income.

“Shortly after he was born we started noticing seizures and so after a full genetic test we found out that we was diagnosed with a very very rare genetic condition called CDKL5 deficiency disorder,” said Noah’s father, Jeff Ledford.

“Not long after we got his diagnosis is when we started realizing that our private insurance through the company that I worked for was just not going to pay for things that we needed,” said Noah’s mom Jenn Ledford.

Families who qualify for the Katie Beckett Program say it’s long overdue.

“The level of care they need is typically provided in an institution like a hospital, but the Katie Becket Program allows them to receive that same level of care in the home,” said Jeff.

Families must apply through TennCare which can be a lengthy process.

Approval won’t be complete until the new year.

“We realize this is not going to be perfect coming out the door but we can keep working together and make it the best possible to accommodate the children and families in our state,” Hatcher said.

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