'A devastating blow': Military families struggle with insurance changes for people with autism

FAYETTEVILLE, N.C. (WTVD) -- The concerns some Fayetteville families voiced in the spring have now become their reality.

"When I heard that they were taking ABA away out of school, I literally felt sick to my stomach. It was a devastating blow because, for my daughter to get the education that she deserves and that she's capable of getting, she needs her RBT," Fayetteville mother Katrina Powers said in May.

RBTs or behavior therapists work with individuals with autism.

Tricare, the U.S. Department of Defense's health care program, added limitations and restrictions to Applied Behavior Analysis (ABA) therapy, particularly in schools and community settings in May.

Powers was one of the parents who voiced concerns over the changes that would impact her daughter's education.

Her daughter, Teagyn, attended school alongside her ABA therapist, Gabby, for three years.

"Gabby was providing support in all aspects, academic, social, personal hygiene. I mean just everything; not that Teagan is not capable, but she does need reminders. She needs someone constantly with her to keep her on task," Powers said.

Powers said the support made a big difference and she's watched her daughter's school scores improve.

However, due to the Tricare coverage changes, Teagyn started this school year alone.

"On top of it being really hard on her mentally and emotionally, we also are not receiving therapy because Teagyn's day is so long. If we go from school, we rush home, take a little break, rush back to therapy, it's just not feasible," Powers said.

She said just in the first few weeks of school, she's noticed a difference.

Teagyn attends the School of Hope in Fayetteville. The private school serves students with autism. Many of the students can only attend if they have an ABA therapist with them throughout the day.

School of Hope principal Amy Sparks said some families have had to leave the school and some have been unable to even enroll due to the Tricare coverage changes.

"When I had parents that come to my office and I have to give them the news that you know they have to have an RBT because of safety reasons. I can see the impact in their eyes. I have to be the one that experiences that mother who's crying, saying to me, 'Amy, this was our last hope,'" Sparks said.

Many students who attend the School of Hope have tried public school and haven't been successful.

Teagyn was able to stay at the private school without her therapist but Sparks said the experience is different.

"It's definitely making an impact on their education. When you have to redirect a child, you know, 25 times in a one minute, you know, you have to think about what teaching is actually taking place," Sparks said.

In the classroom, the RBTs provide that one-on-one support.

Tricare still allows individuals to receive ABA therapy but in a more limited capacity and not for the duration of the school day. Without insurance, families said an aide would cost more than $6,000 a month.

Sparks called the changes a disgrace to the country's military families.

"I think we need to get our priorities in place in check. What's really important? Is it really our kids, or is it all about the money?" Sparks questioned.

In May, a spokesperson for Tricare said the changes were made after three years of collaboration with industry stakeholders and lessons learned.

"Although this is a new requirement that went into effect May 1, 2021, it was never the intent to reimburse for non-clinical or educational services. School services, where BTs serve as school supports, shadows, or aides are beyond the scope of ABA services covered under the ACD. The ACD is authorized to reimburse for the active delivery of ABA services. Tricare authorized BTs in the school setting are not actively rendering ABA services," a spokesperson wrote in an email.

North Carolina lawmakers said they are continuing to hear concerns from families.

U.S. Senator Thom Tillis' office said Tillis is working with his colleagues to improve Tricare's ABA therapy for military children.

"Senator Tillis is a staunch supporter of military families and will continue to work with his colleagues to advocate on their behalf to ensure appropriate medical services are available for special needs children," Lauren Scott, Tillis' press secretary wrote in an email.

Similarly, U.S. Representative Richard Hudson's office said he is committed to strengthening the program. Hudson recently worked to include a study of the program in this year's national defense bill. The study would look into the impact of the program and include direct feedback from parents and stakeholders, according to Greg Steele, Hudson's spokesperson.

"It is the Congressman's goal that this report will be critical to enabling needed improvements to the program," Steele wrote.

In the meantime, parents like Powers are hoping their children don't suffer.

"I just don't understand why this happened or where they're getting their information from because if they were actually listening to the people that are in the thick of it that is, it affects our life every single day. I just don't see how they could do this to us," Powers said. "I just don't know. I don't know what to do."