Families of military children with autism are sounding the alarm on recent changes to Tricare coverage and requirements.
According to a 2020 government report, nearly 16,000 military dependents have some form of autism. This fact makes autism a common diagnosis within the Exceptional Family Member Program (EFMP).
Two of those dependents belong to Air Force spouse Holly Duncan. Her 8-year-old son Nicholas was diagnosed with autism in 2016, while 5-year-old daughter Alyssa’s diagnosis came last year. The kids struggled with issues like communicating verbally, dashing away, expressing themselves appropriately, and staying safe in public settings.
But there was hope. Duncan’s children started Applied Behavior Analysis (ABA) therapy, a vital tool for living with autism that is recommended by the American Academy of Pediatrics. Thirty hours a week of ABA made a clear difference for the Duncan children across all settings, including school, home, and in the community.
“We noticed great change with Nicholas within the first year,” Duncan said. “He started gaining more vocabulary, and the self-injurious behaviors started to go away once he gained more communication with us.”
Alyssa’s improvement came even quicker, with her accurately assessing the safety of her environment within six months when she previously was unable.
The Autism Care Demonstration manual provides applicable EFMP clients like Nicholas and Alyssa with Tricare reimbursement and guidelines. On March 23, 2021, the Defense Health Agency (DHA) announced that as of May 1, ABA therapy would now be heavily restricted. What that meant for the Duncans was that their ABA therapists would no longer help through real-world situations like school, dentists’ offices, and grocery stores. Instead, they would be restricted to only working in the home and clinic setting. Nicholas’ and Alyssa’s ABA hours went from 30 to 15 within weeks.
“This is unfair to contain children on ABA therapy to home/community settings only,” said Nadine Batchelor, an Air Force wife and mom to a 19-year-old son with autism. “How will these children be productive members of society if they cannot be out in the community learning very important safety, social, and communication goals?”
Cutting valuable therapy hours wasn’t the only change for families with autism. As of Aug. 1, parents of kids receiving ABA have to undergo parental stress indicator assessments every six months. If the family refuses, the child does not receive services.
“The demands of raising or caring for a family member with [autism] may increase stress levels,” read a Tricare information sheet. “Monitoring the [stress assessments] can provide useful information for providers and care managers to determine needs for additional support.”
But affected families say they are already aware of additional support and are instead worried about what will happen with that information. If an active-duty parent admits to elevated stress levels, for example, will he or she lose their security clearance or get kicked off a deployment or TDY? Who has access to those private family details? Will the assessments be stored and eventually used in a negative fashion against the families?
No other groups within EFMP are subjected to any sort of forced stress test.
“It’s supposed to evaluate the stress within the family, but knowing I have to fill that assessment out stresses me more than having an autistic child,” said Duncan. “I don’t understand why we’re being discriminated against.”
Exceptional Families of the Military, a nonprofit Duncan volunteers with, is working to encourage DHA decision-makers to reverse the policy changes. Kristi Cabiao, the charity’s Director of Autism and Family Advisory Committee, says DHA’s moves will “increase barriers to autism service for military families.”
Duncan has spoken with multiple legislators and encourages others to do the same.
“These changes negatively affect military members, because people now need to purchase secondary insurance to cover services Tricare won’t cover anymore,” she said. “There’s the possible problem of retention, too, because people are considering getting out just to have services for their children.”
“Military families sacrifice a lot, and the medical care of our autistic loved ones shouldn’t be one of those sacrifices.”