In 2013, when her father returned from a third deployment, Mia Martin was diagnosed with autism at 3 years old.
Autism is a bio-neurological developmental disability that impairs normal brain development and ultimately cognitive function and social interaction.
Mia was enrolled in public school for a while.
Her days started at about 5 a.m. to catch a bus.
She’d sit in a classroom until about 1 p.m. then head off to therapy for four hours, ending her day at about 6 p.m.
The 12-hour days were part of Mia’s routine for four years.
Mia’s father, Fort Bragg combat veteran James Martin, knew it took a toll on Mia.
The public classroom setting was too rigid.
“Even in a classroom of 15 kids with a special education teacher and an assistant, my daughter is quite the handful,” Martin said.
Mia couldn’t adapt.
Last year, they found New Leaf Academy in Fayetteville where lights and sounds are controlled and the environment and curriculum are tailored to children with Mia’s needs.
The school provides a special education teacher, a clinic and behavioral analysis technicians for each of the six children in the classroom.
It’s meant shorter days for Mia, who is now 11.
“In that environment, she thrives,” Martin said.
However, changes to TRICARE, the military’s medical insurance, are concerning. Martin worries that Mia will be removed from the school where he said she’s improving.
It’s not only his own daughter who Martin worries about — it’s all the other military children with autism he believes will be negatively impacted.
In March, the Defense Health Agency, which oversees TRICARE, announced that by May, advanced behavioral analysis services outside of clinical settings will no longer be covered by the military insurance.
Applied behavioral analysis is a popular intervention for autism that teaches behaviors by breaking down asks into small steps and training in a precise way, according to the National Institutes of Health.
For Mia, who is nonverbal, it’s helped her communicate her wants and needs, while also helping her to get back on track if she has “a meltdown,” Martin said.
Redirecting Mia’s focus doesn’t come from a teacher but rather from the behavior technician at her side.
Registered behavior technicians help implement treatment and behavior plans that teach behaviors and skills universally used.
Prior to the TRICARE changes, technicians could accompany children with autism to school and help facilitate the child’s learning.
According to a July news release from TRICARE, behavior technicians were reclassified as non-clinical, thus not covered by the insurance, and as a result, not accompanying children into the classroom.
The release states a TRICARE contractor may authorize board-certified behavior analysts to provide time-limited clinical advanced behavioral analysis services for a child in the school setting.
Martin compared the change to going to a doctor’s office that has no support staff, physician assistant or licensed practical nurse.
Community settings such as dental appointments or sporting events are no longer considered the space for behavior technician unless determined “clinically appropriate” based on a child’s treatment plan, the news release states.
“These changes are based on several years of research and development,” Dr. Krystyna Bienia, a clinical psychologist and senior policy analyst at the Defense Health Agency, said in the statement. “We used lessons learned during the demonstration, and also feedback from providers, advocates, and leading researchers. The updates will help children reach their full potential through clinically appropriate services.”
Martin disagrees.
“Shouldn’t kids get acclimated outside of a clinic setting,” he asked. “That makes no sense. How does it address behavior in a real-world environment?”
Martin said it leaves families who received the services to choose between going back to public school or home schooling their children.
The changes remind Amy Sparks of her own fight to take on the Fort Bragg school system in U.S. District Court in 1997.
Sparks’ husband served in the Air Force for 23 years. Their son Jarred, born in 1992, is autistic.
“I know the battles that these parents are having — not only do I have the experience of having a child with autism, but I also have that experience with TRICARE,” Sparks said.
When her son was young and she brought the lawsuit against the school, there were no local clinics. Her husband would often drive Jarred to Greensboro for services she’d fundraise to pay for.
Sparks said Jarred was likely one of the first autistic children in the Fayetteville area to start applied behavioral analysis therapy.
In 1997, the family sued the Fort Bragg school district to seek an appropriate education for Jarred.
“I said, ‘You’re not going to babysit my child. You’re going to educate my child,'” Sparks said.
Jarred didn’t say “mama” until he was 5. He was mostly nonverbal until he worked with a speech pathologist in Greensboro at age 7.
While enrolled for two years at Fort Bragg schools, he was unable to master 40 objectives, Sparks said.
She removed her son from school and enrolled him in the Lovaas Learning Program, a form of applied behavior analysis.
Once switching programs, Jarred was able to master 400 objectives, Sparks said.
An example, she said, is Jarred’s therapist worked with him to build block structures — a task he couldn’t previously accomplish.
“We saw rapid growth,” she said.
After legal motions and appeals, the U.S. court ruled in 2004 in the family’s favor, ordering they be compensated for the educational services Sparks said her son didn’t receive at the military school.
Sparks views the latest changes to TRICARE through multiple lenses.
She’s a retired public school educator, and after Jarred’s unexpected death in 2011 at the age 19, she opened a school in his memory.
“With my own son, I never wanted to say, ‘What if’ — What if I’d done that treatment? What if we enrolled in a specialized school,” Sparks said.
The Fayetteville-based School of Hope serves only children diagnosed with autism.
Sparks said she does not think teachers in public school settings with larger class sizes and only one aide are always equipped.
At Fayetteville’s School of Hope, co-founded by the Sparks family, each classroom has one teacher, one teacher’s assistant and no more than seven children; and each child has a behavior technician.
If a child enters the classroom anxious, the behavior technician would help redirect the student and provided feedback for the teacher on the child’s capabilities, Sparks said. A behavior technician can help a child improve from the one percentile to the 96th percentile, she said.
That is why Sparks is concerned the TRICARE changes will impact students at her school.
“TRICARE is definitely doing an injustice to the military men and women who serve this country …,” she said. “So many of them are having to be deployed … They don’t need to worry about what’s happening to their autistic child.”
Parents and educators aren’t the only ones with concerns about the changes.
Ira Cohen, who has worked in the field of autism research since the 1970s and has a doctorate’s degree in psychobiology, is the principal author of an analysis tool that evaluates children with autism and treatments and interventions.
His research and autism tool was cited in six Department of Defense reports to Congress on autism in military children.
The DOD reports, using Cohen’s tool to note behaviors of autistic children before and after applied behavior analyst services, questioned whether the services led to improvements for children with autism.
“The end result is that families could be deprived of an important service that they receive based on misuse of the instrument that they were using, which was my instrument, and they didn’t listen to me,” Cohen said.
Criteria for diagnosing autism has broadened, Cohen said.
Some children have IQs average or below average. Others have difficulty communicating or are nonverbal. Some engage in repetitive behaviors, Cohen said.
Cohen wrote a 40-page analysis of the DOD reports, where he questioned how it gathered data to make conclusions.
In his analysis, he wrote the autism rating instrument is designed in two forms — one for parents to analyze their child with autism, and another for professionals to analyze.
He wrote that the tool evaluates core behaviors seen in autism and behavioral concerns.
Among the behaviors evaluated that could generate a higher score are sensory behaviors, such as staring at objects, hand flapping and resistance to change; repetitive behavior such as turning pages back and forth, opening and closing doors and turning lights on and off; social interactions; sleeping problems; aggression toward self or others; fears; speaking abilities and learning; and memory.
Cohen said the rating scale he created is based on a zero to three format, with zero meaning a behavior is not seen, one means it’s rare, two means sometimes it’s seen and three means a behavior is often seen.
Each of the ratings is added for an overall score, with scores between 30 to 40 considered mild features of Autism Spectrum Disorder and scores greater than 60 typically deemed as being severely affected or likely to have an intellectual disability.
The misinterpretation in the DOD reports, Cohen said, is that the reports made a zero seem as if a behavior is missing when in reality it means the child is not engaging in the behavior.
“They assume that you can apply this one measure to all of those cases; and, in fact, if you talk to people who do ABA therapy, what they do depends upon the problems or the abilities of that individual child,” he said. “Often you’re dealing with severe problem behaviors that are impairing the child’s ability to benefit from therapy, and if they are not looking at what the goals of the therapy are and measuring what those things are, they’re providing a disservice to the field.”
Cohen found that 90% of 14,700 patient assessments were not used in a 2018 DOD report that analyzed only 1,577 children.
Cohen wrote that omitting the children who were not showing a behavior could be instances of children having improved.
Omitting those cases, he wrote, likely biased the data of cases that did not change.
His other concerns were the lack of demographics of the analyzed children, and whether both parents filled out the assessment of autistic behaviors in their children.
Age is important because “younger children often respond better to intervention for a variety of reasons,” Cohen wrote.
He said that a “more appropriate statistical analysis” would note factors such as gender, age, degree of impairment and health status among others.
He noted similar issues in other DOD reports, writing that “it is clear that the Department of Defense authors have not bothered to read the manual,” related to the autism scoring.
Analyzing the DOD’s latest report to Congress in 2020, Cohen wrote that conclusions cannot be justified, because of a “lack of understanding” as to how the autism tool “is scored and interpreted and the obvious failure to read the manual.”
“The conclusions one draws from an analysis are only as good as the quality of the information that goes into the analysis,” Cohen wrote. “If the data are sloppy, so are the conclusions and their validity…”
In the Department of Defense’s latest autism report to Congress in June 2020, the DOD stated it had 15,928 TRICARE-eligible beneficiaries diagnosed with autism in fiscal year 2019.
Officials said program costs were $370.4 million that year. .
According to the report, the program which administers TRICARE funding for autism was set to expire Dec. 31, 2018, but extended to December 2023.
The report states that TRICARE-covered services for autism include speech and language pathology, occupational therapy, physical therapy, medication management, psychological testing, psychotherapy and applied behavior analysis.
According to the report, 54% of the beneficiaries diagnosed with autism did not receive applied behavior analysis services.
The report states that while there is limited research about whether early behavioral-analysis interventions can significantly affect the development of some children diagnosed with autism, not all children diagnosed with autism receiving the services show improvement.
The report states that officials analyzed 3,794 TRICARE beneficiaries receiving applied behavior analysis services for at least 18 months.
The report states that factors such as age, symptom severity, number of hours of services and other services were not factors considered.
The report found that some of the autism scores changed, and noted although improvements after a year and 18 months of applied behavior services, most of the changes were small “and may not be clinically significant.”
The report reached the conclusion that the delivery of applied behavioral analysis services in its current format “is not working for most TRICARE beneficiaries.”
Officials wrote that the DOD is concernedwhether applied behavioral analysis services provide the most effective services for beneficiaries diagnosed with autism.
“As of now, ABA services do not meet the TRICARE hierarchy of evidence standard for medical and proven care,” the report stated.
In a Defense Health Agency news release from March, Bienia, a clinical psychologist with the agency, said there isn’t a “one size fits all” approach when it comes to autism care.
The news release stated that applied behavior analysis services for beneficiaries diagnosed with autism will continue but changes would go into effect start May 1 and a rollout plan for all changes goes into effect by Jan. 1.
A spokesman for the Defense Health Agency said changes were based on three years of work with industry stakeholders.
Previous instructions in the TRICARE Operations Manual allowed certain applied behavioral analysis services to be conducted in a school setting if approved in the patient’s treatment plan, the spokesman said.
“The intent was that active (applied behavioral analysis) services would be provided and that treatment would be separate from any parallel educational task,” he said.
The change eliminated the role of the behavioral technician from a classroom setting since applied behavioral analysis services authorized under the program “are designed to be delivered in a one-on-one treatment modality,” the spokesman said.
Cumberland County attorney Jessica Flowers works with autism advocates to brief legislators on the House and Senate Armed Services Committees about how changes affect families.
Flowers said it concerns her that she doesn’t see funding for the services in National Defense Authorization Act proposals.
“It’s just been a nightmare trying to get the services that we’ve had before May 1,” she said.
Flowers thinks limiting the applied behavioral analysis services to clinical settings will create retention problems for the military, because of parents opting to home-school their children because they can’t afford services no longer covered by insurance.
Flowers is a disabled veteran whose husband is still in the military.
Their son Jacob, who turns 6 this August, is on the autism spectrum, she said.
She said the only language he has is copying others.
Flowers said Jacob previously tried a public school and a clinic setting.
“We tried. It didn’t work,” she said. “We went another route and found a place where he’s able to flourish, and now it’s being pulled out from under us.”
Flowers said her son, with behavioral assistance, is able to learn the same as other children who are not in special education.
Despite developmental delays, Flowers said, her son is smart and could identify colors by touching them in kindergarten and knows letters, shapes and sounds.
Her son has attended a private school with a disability grant, but she said TRICARE paid for his therapist to be in the classroom.
The school — which requires children with autism to be accompanied by a behavioral technician — won’t allow her son to return without one.
With the first day of classes beginning Wednesday, Jacob has been left in limbo at home as his family waits to see if he can be placed in a clinic or decides whether to enroll him back in public school.
In public school, he’d be placed in a special needs classroom without therapy. In a clinical setting, he’d receive therapy without an education, his mother said.
Flowers is grappling with limited options for Jacob.
“Do I let my son continue his education where the only option is public school in an autism classroom, which was dreadful for him?”
In a public school, she said, Jacob was placed in an enclosed special needs classroom and would come home “throwing a tantrum or lying on the ground banging his head on the floor.”
Since attending the private school, she said, he has not had any of those aggressive tendencies.
She said a disability grant covered her son’s education, and TRICARE covered the therapist who worked 40 hours a week with him.
Her son thrived at the private school and made best friends.
“I was told, having a child with autism, that he wouldn’t show those kinds of emotions or have the ability to interact with peers like that,” she said.
She said her son was able to participate in a meaningful education.
She said without a behavioral technician, he is unable to go to the school and receive therapy at the same time.
She said he’s not the type to raise his hand if he needs to go to the restroom, but his behavioral technician picks up on cues and voices his needs.
The therapist, she said, helped ensure he’d behave and meet goals that were in place for his individualized education plan.
“We love Jacob and would not change him for anything,” Flowers said. “But we also want him to absolutely become the most independent, most productive version of Jacob he can possibly be.”
To cover the costs of a technician outside of a clinical setting, 10 hours a week would be $8,000, Flowers was told.
Martin and Flowers said other insurance carriers cover applied behavioral analysis services that are being cut for military families.
Martin said it seems as if the Defense Health Agency is limiting services, which he said is causing applied behavioral analysis companies to leave Fayetteville.
“It feels like this new policy change was backdoored and was not in the best interest of the families concerned,” Martin said. “I know the government needs to budget, but going after services for disabled children with autism is a new low.”
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