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Military parents of autistic children relieved by clarification on rules

Kent Berry, 6, runs around the playground on a recent afternoon while his mother, Rebecca Breedlove-Berry, looks on. Breedlove-Berry is concerned that a new TRICARE policy could make it more difficult for her son to receive the treatment he needs for autism spectrum disorder.

KAISERSLAUTERN, Germany — Military families with autistic children were relieved to learn a contentious new policy for autism treatment will not apply to them.

“For all of the existing programs, there is no plan to implement more rigorous requirements during the next year,” Dr. Jonathan Woodson, assistant defense secretary for health affairs, said during a July 11 conference call with reporters.

Military parents and advocacy groups took the news as Tricare easing restrictions on military families in the face of intense pressure. But in the conference call, Woodson denied that Tricare was backtracking.

“We’ve not changed any decision. We’ve tried to put out clarifying information,” he said.

Over the last 10 days or so, scores of military parents with autistic children, autism advocacy groups and members of Congress have loudly criticized the military’s healthcare system for implementing more restrictive rules for coverage of autism treatment, changes that Tricare quietly published in an updated policy manual late last month without notifying current beneficiaries.

The proposed rules, scheduled to take effect Thursday, include limiting coverage of special behavioral therapy to two years without a waiver; psychometric testing every six months to show measurable progress; and an age cutoff of 17, without a waiver.

Tricare officials now say those new restrictions only apply to a 12-month pilot program to expand autism therapy coverage to children of non-active duty and retired personnel, who previously could not access this benefit.

“That definitely calms my nerves,” said Air Force spouse Rebecca Breedlove-Berry, whose six-year-old son, Kent has autism spectrum disorder.

But, she added, “My heart still really goes out to the retirees. They’re still going to have to follow those new policy guidelines.” In some cases “we’re talking about wounded warriors, very young families who are very dependent on Tricare. I don’t know how they’re going to receive all the services” they need with those limitations.

Some autism advocacy organizations were cautious about the Tricare clarification, noting that the actual policy manual updated last month, which lays out the new rules and seems to clearly state they apply to all families, has yet to be changed on the Tricare website.

The new rules are tied to applied behavior analysis (ABA), a special type of therapy that uses reinforcement to shape and maintain positive behavior. Though it’s become the most widely used behavioral intervention for autism spectrum disorders, not all states or private insurers pay for it, considering it to be an educational tool rather than a medically-necessary treatment. Depending on how many hours of intervention are needed, the therapy can cost families as much as $60,000 a year, according to the advocacy organization Autism Speaks.

An estimated 23,000 military dependents have a diagnosis of an autism spectrum disorder, the collective term for a group of developmental brain disorders.

According to the National Institute of Mental Health, the term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Symptoms typically fall into three areas: social impairment, communication difficulties, and repetitive and stereotyped behaviors, according to NIMH. Scientists don’t know the exact causes of the disorder but research points to both genetic and environmental factors.

Tricare previously did not extend ABA coverage to non-active duty medical beneficiaries. Congress in the 2013 National Defense Authorization Act ordered Tricare to start the pilot program by April, according to Autism Speaks.

The direction from Congress came after a federal judge last summer ruled DOD must provide ABA therapy for not only active-duty servicemembers and their families, but also families of retirees. U.S. District Court Judge Reggie Walton recently reversed part of his decision and remanded the case back to the agency to reconsider its policy.

Pentagon officials have said they would re-examine the issue but there would be no more immediate changes in coverage.

As part of the pilot, non-active duty families will have to pay a 10 percent cost share for ABA therapy, though Tricare officials say on the agency’s web site that few, if any beneficiaries, will likely exceed the $36,000 annual cap.

Breedlove-Berry said she was amazed to see the power of social media and how quickly it brought this issue to the forefront. In recent days, Tricare’s web site was lit up by comments from angry parents, desperate for answers from Tricare on what the changes meant for their children. Ten years ago, “we would have been handwriting letters to our representatives,” she said.

“And man, we were able to get together as a group; the autism community in the military, we really back each other up. It’s very empowering to know that we have a voice and people actually listen to us.”

Woodson in his comments briefly acknowledged the uproar. “We are apologetic to the autism community because I know there has been some controversy over the issue,” he said.

Other parents pleaded for the autism community to continue to stand up against Tricare.

“All of that outrage needs to continue – everything that had active duty families upset is being implemented for retiree families. Please don’t stop fighting,” read one post on American Military Families Autism Support Facebook page.

Stars and Stripes reporter Chris Carroll contributed to this report.
svan.jennifer@stripes.com

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