When Zachary Berge was diagnosed with autism shortly after his second birthday, he couldn’t speak a word. He often threw tantrums because he couldn’t express himself.
His parents turned to “applied behavioral analysis,” widely known as ABA therapy and recognized by the medical community as one of the most effective autism treatments for children.
But ABA therapy doesn’t come cheap, and it has cost the Berge family of Crestview, Fla., nearly $56,000 — a hefty bill they’ve had to pay out of pocket because the treatment isn’t covered by the family’s health plan, a program for active and retired military families known as Tricare.
A supplemental benefits program available under Tricare offers families of active-duty members as much as $36,000 a year each to cover the cost of the therapy and other autism treatments. But the Berges are not eligible for that program because Zach’s father, Kenneth Berge, retired from the Air Force in 2006.
“I thought it was a fluke that it’s not covered,” said Dawn Berge, a former college speech instructor whose full-time job now is to take care of Zach. “We believe with our military members serving like they have, this is something they would be covering.”
There are nearly 8,800 dependents of retired military personnel who have been diagnosed with autism, according to 2007 Department of Defense figures.
At 5, Zach can put together two-word phrases, eat with utensils and finally say “Mom” and “Dad,” something his mother calls “a blessing.” His progress, she believes, came in part from his expensive treatments.
ABA therapy breaks down behaviors into small steps that can be taught individually to a child, using rewards as a motivator. For example, to teach a child to say hello to others, an ABA therapist will grant access to a playground only if the child says hello to the other children there.
“Children with autism don’t learn these important social behaviors on their own,” said Dr. Grace Gengoux, a clinical instructor in child and adolescent psychiatry at Lucile Packard Children’s Hospital at Stanford University. “They need this kind of structured teaching.”
The Berges have sued the Department of Defense, which administers Tricare. A department spokeswoman declined to comment, saying she was not authorized to speak about an ongoing legal matter — but a government lawyer has informed the Berges that the department is reconsidering their claim.
Tricare representatives told military families that it considers ABA an educational program, not a medical benefit. Because of this, ABA therapy falls under the supplemental benefits program offered by Tricare only to active-duty personnel.
Within the last two years, a host of states has enacted legislation requiring insurance companies to pay for ABA therapy and other autism treatments. Seven states have signed autism insurance bills into law this year alone, according to the autism advocacy group Autism Speaks.
Most state legislation, however, includes age limits and caps on how much insurers are required to cover for ABA therapy and other autism treatments. It often applies only to large group insurance plans.
The federal healthcare bill that passed in March included a provision that will require health plans that sell products in new exchanges to cover ABA therapy and other autism services. Experts said it was not clear whether it will apply to Tricare.