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Military families want changes to autism coverage

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Posted: Sunday, March 4, 2012 12:00 pm | Updated: 9:51 am, Thu Aug 16, 2012.

By Rose L. Thayer

Killeen Daily Herald

Prepared to remain in the military indefinitely, Lt. Col. Chuck May is determined to get his children the health care they need.

"I would stay in the Army well beyond 30 years if I knew I could have my family covered with TRICARE," said the officer in Fort Hood's Operational Test Command. "I don't care about pay raises, and I don't care about promotions."

May's sons, ages 11 and 14, have been diagnosed with forms of autism spectrum disorder. In the year before TRICARE covered any autism treatment, the May family spent $19,000 on therapy for just one of his sons.

Now TRICARE offers autism therapy through the Extended Care Health Option, but only active-duty service members are eligible to participate. If May retires, his sons lose the coverage.

"It's a really skewed system," said Stuart Spielman, senior policy adviser and counsel for the advocacy group Autism Speaks. "The people who've served the most, who are retiring after many years of service, or maybe retired because of war wounds, they won't have access to benefits."

But the coverage discrepancy would disappear if a new congressional bill became law. Sponsored by Rep. John Larson, D-Conn., and now in committee, the Caring for Military Kids with Autism Act would make autism treatment, called applied behavior analysis, available to retirees.

"We are mighty proud of our TRICARE system and to leave a gap in this system seems to be wrong," said Rep. John Carter, R-Round Rock, who is co-sponsoring the bill along with 54 other representatives. "That's not the kind of burden we should give. We should try to give effective health care to those families. They've earned it, and they're entitled to have it."

Many local military families seek treatment at the Harker Heights location of Kansas-based Autism Concepts, which provides applied behavior analysis.

"We teach kids how to learn," said Ian Santus, regional director for the behavioral consulting company.

Applied behavior analysis, said Santus, is the only empirically based treatment for people with autism. During the sessions, therapists work with children to modify behaviors of social significance. Parents are encouraged to watch the one-on-one sessions and implement them at home.

Hard to afford

But many active-duty military families are struggling to afford the difference between the treatment their children need and TRICARE's coverage limits.

The American Association of Pediatrics recommends a minimum of 25 hours a week for autism therapy, but TRICARE coverage has a $3,000-a-month cap, which pays for about 10 to 14 hours of treatment a week.

Six-year-old Broden Huhtanen is one of about 390 autistic family members at Fort Hood, according to information from Carl R. Darnall Army Medical Center. He was prescribed 40 hours of treatment a week. But at nearly $10,000 a month, his mother Shelly Huhtanen said it's impossible to afford.

"We are going to put him more in school next year and less in clinic," said Huhtanen, whose husband is a major in the 1st Cavalry Division. "We just can't afford it. We'd go into debt."

Broden attends a private pre-school four hours a day and spends about 26 hours a week at Autism Concepts.

Huhtanen's husband has deployed three times, which she said benefitted the family because of the extra income and respite care. "It's awful that he's gone, but we'll be able to provide more for our children," she said.

In 29 states, including Texas, insurance companies are required to cover applied behavior analysis, but TRICARE is federal and overrides state laws.

"I think (TRICARE) is falling behind now," said Spielman. "What we are seeing in state after state is this trend to providing what's necessary coverage for an affected individual."

If the congressional bill passes, active-duty military families, such as the Huhtanens, will benefit because the federal legislation would move the autism therapy from the Extended Care Health Option into standard TRICARE coverage.

Program enrollment

Switching autism therapy to regular coverage also will end the hoops military families must clear to join the extended health option.

Families now must first get their children registered with the Exceptional Family Member Program, which makes sure the military doesn't send families to installations where they cannot get the medical and educational support they need, said Dr. Glynda W. Lucas, medical director of the program.

Besides autism, exceptional family members are diagnosed with potentially life-threatening or chronic diseases, such as seizures, mental illness, asthma and attention deficit disorder. Enrollment in the program takes between five and six weeks. Once children are registered, their families can join TRICARE's optional coverage, which lists applied behavior analysis as a special education service.

"It is important to note that (applied behavioral analysis) is still not considered to be proven medical treatment for autism, based on current reliable evidence as that standard is defined for TRICARE by law and regulations, and thus applied behavior analysis is still prohibited by law from being covered under the basic TRICARE medical program," said Austin Camacho, a TRICARE spokesperson in an email.

Reach full potential

But proposed congressional legislation isn't just beneficial for military families dealing with autism.

Suzie Svoboda's 7-year-old son, Tyler, is missing a chromosome and benefits from applied behavior analysis therapy, too. "It's amazing how far he has come," she said.

The therapy sessions have helped her son with several specific social issues, such as suitable behavior when he sees her hair in a ponytail and wants to yank it.

"He will stop what he's doing and come over and pull it out," said Svoboda. "That's not appropriate to do that, so he has to learn ... because you can't just go up and pull on a girl's hair. You'll get in trouble."

While she said her son doesn't need therapy every day anymore, he does need it to become successful.

"The therapy has been an absolute benefit, especially the tools, because the key to any of that is just like school and anything else you do, it's got to be something you can apply at home," said Maj. Shawn Svoboda, 1st Cavalry Division. "The thing we've talked about for all three kids is that all I ask is that we set things in place that they can reach their potential and bottom line is we don't know what it is."

Huhtanen said she wants her son, Broden, to reach his full potential, too. "Why are you writing what his finish line is going to be when he's not even halfway through the race?" she asked. "Don't write off my kid just yet."

Contact Rose L. Thayer at rthayer@kdhnews.com or (254) 501-7463. Follow her on Twitter at KDHreporter.

About autism therapy

Applied behavior analysis uses the principles described by B.F. Skinner in the 1930s. The highly specialized therapy is performed one-on-one, with an average session spanning two and four hours.

At Autism Concepts, therapists work primarily with children to teach them to learn in a typical classroom setting as well as various social skills, such as how to sit and listen to a teacher, answer questions and ask for something. The ultimate goal is for the therapist to disappear and the patient functions appropriately regardless of setting.

In Central Texas, applied behavior analysis is offered at Autism Concepts in Harker Heights and the May Center for Autism Spectrum Disorders in Killeen.

Sources: Austin Speaks and Autism Concepts

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