KNOXVILLE, Tenn. — Some families are running into problems with a program meant to help children with disabilities.
Tennessee’s Katie Beckett program is for children under 18 years old with disabilities or complicated medical needs. This program is for children who are not Medicaid eligible because of their parent’s income or assets.
Some families say the program is so complicated that navigating it feels like a part-time job.
"It's the caregivers and the parents who wind up working 15 extra hours a week to get their kids the services that they need," said Shannon Efteland, a mother who is navigating the program.
Over 1,000 people are using the program in Tennessee, and the program is steadily growing as more people come to learn of the benefits. Tennessee enacted this waiver around a year and a half ago, and it was the last state to do so.
"There were a lot of families that were vocal at trying to get the Katie Beckett program started," Efteland said. "So, we were all waiting for it like we were already on board."
Shannon Efteland's son's name is Liam. He is an active, bubbly 11-year-old boy.
"Liam has more energy than we kind of know what to do with. So we always try to find other activities for him," Efteland said.
Liam is a good candidate for the Katie Beckett program because he was diagnosed with Down Syndrome. He requires additional medical attention, specialized therapies and individualized classrooms and activities.
Individually, those things can be costly, but together, they all stack up expensive bills for the Efteland family. Katie Beckett Part B, a part of the state's program to help people who don't qualify for TennCare, can help families with up to $10,000 a year in services for their child with a disability.
When the Katie Beckett waiver was rolled out in Tennessee, the Efteland family was one of the first ones to sign up. However, it took months to get their son into the program.
"The application is involved. It's a long application, and I didn't have all of the information for it. So there were times when I just had to wait weeks till I collected all the information," Efteland said.
Carol Westlake with the Tennessee Disability Coalition said she has heard of the application concerns from several families participating in the Katie Beckett program.
"The eligibility system is complicated, and there are some things about it, that cannot be changed because of the nature of Medicaid," Westlake said.
For example, to qualify for Katie Beckett, families need to be denied TennCare. So, these families have to go through the process of applying for TennCare before they have the chance to apply for Katie Beckett.
"So, we wound up having to call several times for them to say, 'Oh, yeah, wait, you don't qualify for TennCare. You can get Katie Beckett,' but that was another 2 and a half month delay just in communication," Efteland said.
Next to the application process, families say some of their frustrations are rooted in reimbursements.
For Part B of the Katie Beckett program, families can get up to $10,000 in services for their children each year, but accessing that money has proven to be difficult for many families.
"TennCare rolled out a card, which was characterized as a debit card. It's supposed to be a flexible spending account," Westlake said. "The truth is, it's not. It's a reimbursement card."
According to Krystyne Brown, the deputy director of communications at the Tennessee Department of Intellectual and Developmental Disabilities, which oversees Katie Beckett, the debit card can currently be used at businesses that are coded as medical providers.
Some examples of those places include hospitals, doctors' offices, therapy centers, vision providers, dental offices and pharmacies.
However, the Katie Beckett program said it will cover other things too like recreational therapies, educational endeavors and certain camps.
"If a business is not coded as a medical provider and the card cannot be used, the family can still receive reimbursement for the purchase of eligible items," Brown said.
Families said it's much more complicated in practice.
"So, if you're in a doctor's office, you can swipe your debit card for $10,000 for Katie Beckett, but you still have to submit paperwork for it to go through," Efteland said. "So, you still have to get an itemized bill from your doctor that shows all the information and send that to them."
Then, for non-medical-provider-coded costs, it can't be purchased from the debit card. Instead, it must go back to the families as reimbursements.
"Many families are relying on spending money first, which is kind of scary," Westlake said.
The Efteland family was in that situation at the end of 2021.
"We applied for a bunch of reimbursements towards the end of December from November and December, and those didn't come until the end of February," Efteland said.
Another issue frustrating this community of families is the continuity of care. Brown said the Katie Beckett program "requires a letter of medical necessity from a medical professional" for over-the-counter medications.
"So, even though TennCare is secondary insurance, it appears to want to guide a child's care. So, children have lost continuity of care because TennCare, through the Katie Beckett program, says, 'No, we won't provide that medication, you're going to have to take a different medication,'" Westlake said.
Although families have spoken about a lot of problems with the program, they all agree that they need it.
"I think the Katie Beckett program is so needed because of kids like Liam. Liam needs the additional therapies," Efteland said. "It takes him about 10 to 15 times longer to learn physical activities and motor planning than a typical kid does. So, that means we'd have to spend way more money and way more time at those activities."
They just want it to work how it does in all other 49 other states.
"We should have been able to look at other states and say what's working and apply that quite easily. There are examples all over the country," Efteland said.
Brown said the Katie Beckett program is listening to the concerns and evaluating the program based on consumer feedback.
"DIDD case managers contact each family enrolled in Part B every month to assess the quality of services and support, and receive feedback from families in regards to any service-related issues. DIDD recently conducted a satisfaction survey with Katie Beckett families and continues to modify the program based on family and stakeholder feedback," Brown said.
She also mentioned Commissioner Brad Turner, who oversees the Katie Beckett program, plans to hold individual family meetings in all regions this summer to evaluate the feedback they received.
Many Katie Beckett families said they hope it will lead to some change.
"It's like, 'We hear you, we're aware of that. Yay!' But that step of fixing it never seems to happen," Westlake said. "It's always, 'Well, that's somebody else's issue. That's a contractor issue. That's a DIDD issue. That's a TennCare issue.' It's like, well, maybe everybody ought to get together and fix the issues."
"It's time to step up. It's time to take care of those families. It's time to take care of those children and not make it an extra full-time or part-time job for the moms because that's who carries it all," Efteland said.