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'So rudderless': A couple's quest for autism treatment for their son hits repeated obstacles

Michelle Andrews, Kaiser Health News on

Published in Parenting News

Two years after the Rioses noticed their son’s atypical behaviors, they enrolled him in individual ABA therapy for 15 hours a week at a center near their home. It felt like the pieces were finally falling into place. Sebastian’s language skills were getting better because of speech therapy, but he was very self-directed and still not good at making eye contact. He sometimes wandered off on his own, a terrible safety risk, and couldn’t use the bathroom by himself.

Amparo’s health plan administrator, Trustmark, confirmed that ABA therapy was covered, with a copayment of $25 per session.

It was tough for Sebastian at first, Amparo said, as he worked with a therapist to learn how to be less rigid and less focused on doing only what he wanted to do. But he gradually got better at skills like making eye contact and using the bathroom on his own.

The relief was short-lived.

In September, the Rioses started getting notices from the health plan administrator saying it wouldn’t pay for the therapy because it wasn’t medically necessary. Unfortunately, the therapist who had provided the diagnosis hadn’t screened Sebastian using the Autism Diagnostic Observation Schedule (ADOS-2), a highly regarded test.

Sebastian’s developmental pediatrician sent a letter to the health plan explaining the need, and the ABA therapy provider sent clinical notes from Sebastian’s sessions.

It didn’t work. Trustmark refused to pay for the ABA therapy, and in February the Rioses discontinued it. Now they’re facing more than $11,000 in bills for the sessions. Without the therapy, their son’s progress is slipping, Amparo said. He’s stimming more and has been distracted and disruptive in his kindergarten class, needing constant reminders to stay focused.


Trustmark declined to comment for this article.

“It’s just really frustrating” for parents, Amparo said, “but ultimately it’s very sad for my son.”

The Rioses appealed the denial but lost. An independent reviewer found in May that the ABA services weren’t medically necessary and questioned whether Sebastian had autism. He noted that Sebastian hadn’t been screened using the ADOS-2 test and said he needed it.

It was the last straw. Amparo quit her job, and the family switched their health coverage to her husband’s plan. They began a new assessment process for Sebastian, now 5. They paid $500 to a provider to administer the ADOS-2 test, which confirmed his autism diagnosis in June. Now, three years after starting the search for help, they’re trying to enroll Sebastian in ABA therapy again using the new health plan’s coverage.

“You want your child to be assessed as early as possible to get as much help as possible,” Amparo said. “This is a critical time in his development, and I just feel beaten down.”

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