Families protest loss of autism therapy providers

Nearly 1,000 Arizona children have lost or will soon lose their autism therapy coverage after Medicaid insurance plans canceled contracts with two of the state's largest providers.

Why it matters: Applied Behavioral Analysis (ABA) is critical to communication and life skills development and prohibitively expensive if not covered by insurance, parents and providers told Axios.

Threat level: "This is not a luxury. This is the difference between a child thriving and a child disappearing back into silence," said Elizabeth Galvez, the mother of three boys with autism, two of whom were nonverbal before ABA therapy.

State of play: Late last year, Mercy Care canceled its contracts with Action Behavior Centers (ABC) and Centria, which together have about 50 ABA facilities statewide. Another Medicaid provider, UnitedHealthcare Community Plan, also canceled its contract with ABC.

• Some families received temporary extensions, while others lost coverage early this year.

What they're saying: Mercy Care spokesperson Deborah Hillman did not answer questions about why the contracts were canceled. In a statement she said the nonprofit insurer stands by its decision, "which was made thoughtfully and in alignment with our responsibility to members and network standards," and that it is confident that children can continue their care at one of the 70-plus remaining in-network ABA providers statewide.

• UnitedHealthcare did not respond to Axios' request for comment.

Yes, but: Parents we spoke to said ABA waitlists were already months-long before Centria and ABC were removed as options. Many noted that other providers are significantly further from their homes and that changing their children's routines could undo progress.

Zoom in: Lea Zibeth, a 28-year-old single mother, told us she was on a waitlist for eight months before getting her 3-year-old son Aiden into ABA last August.

• Aiden, who was nonverbal when he began 40-hours-per-week ABA, started speaking last month — an incredible achievement that could easily regress without continued care, Zibeth said.
• He received a one-time extension for services through May. After that, Zibeth said she'll likely have to quit her job to take care of him.

The latest: Nearly 100 parents, providers and advocates gathered outside the state Capitol on Thursday to demand insurers revive the contracts. Several mothers shared stories of successes their children experienced with ABA.

• Galvez said earlier this week, her sons were debating which dinosaur is the coolest — "this may seem small to you, but to us, it's a miracle."
• Kim Powell introduced her 4-year-old son, who was nonverbal before ABA. He confidently spelled his name for reporters: "T-e-d-d-y; my name is Teddy."

How it works: ABA is individualized, one-on-one therapy that encourages communication, builds practical life skills and reduces behaviors that interfere with safety or learning, Jamie Alexander, a regional clinical director for ABC, told Axios.

• It's often used as an early-intervention strategy to prepare children for traditional school settings.

What we're watching: Parents are hoping the Arizona Health Care Cost Containment System, Arizona's Medicaid agency, will pressure the plans to restore service options.

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