Program for families of disabled kids struggling, advocates say

Poster image (4).jpg
Posted at 8:05 PM, Nov 24, 2021

NASHVILLE, Tenn. (WTVF) — Gov. Bill Lee signed the Katie Beckett waiver into law in 2019, but two years later, families using the program said they experience some issues.

The program — launched a year ago — is meant to help families with disabled children facing high medical bills.

Advocates for the program initially changed their tone after families were unable to obtain promised reimbursements.

According to Sarah Sampson, of Tennessee Disability Coalition, it's created frustration for parents looking for relief from medical debt.

"It really can save families from having to institutionalize their kids and it can save families from bankruptcy and divorce and other drastic measures they would have to take to provide for their kids with disabilities," Sampson said.

However, she believes that bureaucracy has gotten in the way. Parents are reporting they can't get money for their child's needs, or that the services just aren't available they need.

That's what happened for Mandeep Kaur and her 4-year-old son who is on the autism spectrum.

"We being an immigrant family in this country, we don't have much help," Kaur said. "We don't have any family here, and it provided a lot of resources. And of course, the money does help with the medical expenses and anything else that's related to their medical needs."

Kaur said the program has been mostly good for their family. But recently, they've been hitting barriers they can't seem to overcome.

"The problem is, the state legislature was expecting to enroll about 3,000 kids in this program," Sampson said. "We've only enrolled about 1,000 so far. So, there's more need out there that isn't being met."

Sampson said the sign up process can prove difficult for parents.

"There's just not services available in the community right now. There's a staffing crisis that is just dramatic in Tennessee," she said.

That's what Kaur's family is experiencing.

She needs respite care to help take care of her son, but she's on a wait list.

"I'm kind of struggling with TennCare, the medical part. Respite was my first thing that I really need help with," she said. "There's not enough respite providers."

Both Sampson and Kaur said parents are running out of patience.

They're hoping the legislature can help smooth things out.