Upside Down

Shawn Anderson sits at her desk after talking to her daughter Barbara, 19. The family relies on behavior technicians in the home to help each of their four autistic children.

From Shawn Anderson’s home command center, she runs her family with precision that rivals any military operation. It’s the only way the Air Force veteran can keep some semblance of order in a life that can fall out of order at any given moment. Anderson is mom to four children ages 11-19, all on the autism spectrum, each with their own medical, emotional and educational needs, and each with their own cadre of specialists and educational plans to help them develop and one day live independently as adults.

“It is not easy. I’ve had to sacrifice my education and my career and everything else for autism,” Anderson says, without complaining. Her husband Nathan, still in the Air Force, is currently stationed in Los Angeles. Because the children regressed with each military move, the couple settled in Prunedale in 2008 to provide stability.

Now the family is faced with an external threat that Anderson fears will undo the progress made by the children in recent years, thanks to the Comprehensive Autism Care Demonstration launched in 2014. The program provides tutors and other specialists to work with children in their homes and school settings. This spring, with little notice, the Defense Health Agency made a policy change that led to TRICARE, the military’s health insurance provider, significantly cutting coverage for the program over the objections of autism and medical specialists. The changes began on May 1 and go into full effect on Jan. 1, 2022. Anderson says her children are losing two-thirds of the services they receive.

In a report, the DHA claimed the services under what’s known as Applied Behavior Analysis were “not yet meeting the reliable evidence standards” as medically effective care. The creator of the tool that assesses the effectiveness of ABA services, Ira Cohen, a PhD researcher considered to be one of the world’s foremost autism experts, claims the Department of Defense, which oversees DHA, has been manipulating assessment data presented to Congress to bolster the argument that those services are not effective and thus no longer necessary. “It was basically an analysis that was not thought through unless their goal was to show it wasn’t working,” he says.

The care is expensive. Anderson estimates that for just her 11-year-old son, who receives 32 hours of direct service through an aid at school, it costs nearly $1,000 a week. He can receive help at home, but that would mean pulling him out of school where he’s been making progress. “He needs to be able to interact with his peers. We can’t work on that at the house,” she says.

There are dozens of other military families in Monterey County facing the same cuts, says Presidio of Monterey Army Community Support Chief Laura Parsons. Over 200 families with special needs dependents, including those with autism, are served by her office. “When TRICARE made these changes it was very upsetting for a lot of families,” Parsons says.

Anderson, who wants her kids to one day live independently, questions the logic of the cuts. “Paying for care up front is so much cheaper in the beginning than to take care of them the rest of their lives,” she says. “Is that not a better investment than pulling the services?”

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