'A disgrace': Military families feel betrayed after insurance changes affect children with autism

FAYETTEVILLE, N.C. (WTVD) -- It has been a long road for the Roper family to get their 11-year-old son Chase to where he is today -- playing the piano and loving fifth grade.

Chase was diagnosed with autism when he was 2 years old and since then it has been a challenging journey to help him do everything such as playing, eating and communicating his needs.

The family credits much of his success to Applied Behavior Analysis (ABA) therapy and specifically his therapist that joins him throughout the day at school.

ABA is a type of therapy for individuals with autism that works to reduce negative behavior through positive reinforcement. Certified professionals, sometimes known as registered behavior technicians (RBTs), help carry out individual treatment plans.

"So the ultimate goal is to eliminate those negative behaviors, increase communication," said Shelly Roper, Chase's mother. "They help him use his words, say what he wants, say if he's feeling good or bad, what his preferences are."

Despite the improvement Chase has made, she's concerned his progress will soon stop.

"He loves school, he was learning. He's flourishing and they want to take that away from him," Roper said.

Roper's insurance program, Tricare, recently announced changes that will no longer cover a therapist joining Chase in school all day.

Roper's husband has been an active-duty soldier for more than 20 years, which qualifies them for Tricare, the U.S. Department of Defense's health care program.

As of May 1, Tricare added limitations and restrictions to ABA therapy, particularly in schools and community settings.

"To me, they just want people like him to go away," Roper said. "There's no other alternative for a family like myself and where else would we go? We can't move, we're stationed at this base."

Chase isn't the only one in Cumberland County affected by this change.

"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 it she needs her RBT," said Katrina Powers.

Powers' 9-year-old daughter attends the same school Chase does in Fayetteville, the School of Hope. The private school serves students with autism.

"There are many students here who do not have another place to go, and I've had parents cry, literally crying to me thanking me for this school, and what it has meant to them," said Amy Sparks, the principal at the School of Hope.

However, for many students to attend, they need to have an RBT by their side, something that won't be an option in the future for students who are covered by Tricare.

"It's not because I want to lose the students, it's a safety issue," Sparks said. "We need those extra people here to help us, and it will it will jeopardize a lot of our kids not being able to come and it's devastating to the parents because they love the school."

Families like the Ropers and Powerses, who are now scrambling for a solution.

"Starting next year. I do not have a plan I do not know," Powers said. "I honestly don't know what is next and that's scary."

Both families tried public school without success and paying for an aide without insurance costs around $6,000 a month.

"So then my other option is as well then, he's going to have to be homeschooled. Well, in my mind, that is discrimination against a person with special needs," Roper said. "You are preventing them from having the ability to get an education from trained professionals."

Tricare's changes still allow individuals to receive ABA therapy and see RBTs but in a more limited capacity and not during the entire school day.

A spokesperson for Tricare explained 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.

Many said they can't help but feel stung by this sudden change.

"It's a disgrace. It's a disgrace our men and women are giving their lives for this country and their children are being neglected and it's wrong, it's morally wrong," Sparks said.

She also explained that RBTs are critical to keeping students focused on the lesson, but not to teach.

"I can tell you one after another after another, of kids who had this RBT come with them to the School of Hope, and they're like different children now, totally different children, and it's getting to the point possibly one day that they won't even need an RBT anymore, but we can't take away the tools to help them build this house," Sparks said.

A 2020 annual report on the Department of Defense's Autism Care Demonstration found the program served close to 16,000 families in 2019. The report found around half use ABA services.

Kristi Cabiao is a member of the organization Exceptional Military Families that connects military families with disabilities and special healthcare needs. Her husband also an active-duty member and her 5-year-old son has autism.

She said multiple families have expressed feeling heartbroken, panicked and afraid. She said ABA is considered a basic coverage by almost every other insurance provider.

"It's hard to accept because as military families we are here to serve our country and our husbands, our spouses, they spend a lot of times away from their families and they go in good faith that their families are going to be taken care of whenever they are deployed and not able to be there to support us and to know that there are cuts being made that is going to be devastating for our son and for the children that are most vulnerable in the military health care system, it's hurtful. It hurts whenever he's given 18 years," Cabiao said.

She, like many other families, expressed that she has seen significant progress in her son through ABA and is worried about his safety and ultimately about his long-term life.

"He's still only 5 years old, so we don't where Logan is going to go with his life but if we aren't able to get him the therapy that he's benefitting from and help him learn how to care for himself, just the basic life skills, then he's not going to be able to potentially live on his own, have a job, have meaningful relationships," she said.

Cabiao has spoken with Sen. Thom Tillis, R-NC, along with U.S. senators Kirsten Gillibrand, D-NY, and Elizabeth Warren, D-MA, regarding these concerns.

A spokesperson for Tillis confirmed he's recently heard concerns from 11 different families.

"After hearing their concerns, he is even more committed to ensuring that all military families with exceptional family members, including children with autism spectrum disorder, can get all of the healthcare services they need at the right time, at the right place, and with the right provider." Lauren Scott, Tillis' press secretary said.

Similarly, Rep. Richard Hudson's office is also taking many calls from Cumberland County families.

"As Fort Bragg's Congressman, I have heard directly from families who rely on this program. I am very concerned about this loss of care and I'm working with my colleagues on the Armed Services Committee on a solution," Hudson said in a statement.

As families wait for any reversals, their fears for the future remain.