CHANDLER — A Chandler family is suing Arizona’s Medicaid agency over its decision to allow insurers to drop two major providers of a critical autism therapy.
Melissa Fernandez’s 5-year-old son is one of an estimated 1,000 Arizona children who could lose access to applied behavior analysis therapy. Any lapse in service would mean regression for Colin, she said.
“We start to see that very shortly with Colin, like on long weekends and ... holidays,” she said. “So I could see him slipping back into food regressions, stuff like behaviors that he has been working so hard to avoid, self-injurious behaviors, dangerous behaviors.”
She said Colin's ABA therapy has made him more self-aware.
"It'd be really hard," she said. "It'd be really scary."
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The Arizona Health Care Cost Containment System pays insurers Mercy Care and Arizona Complete Health to provide services to children with autism. The agency approved Mercy Care’s decision to drop two ABA providers, including the one Colin has been going to since he was diagnosed with Level 3 autism at age 2.
“He had been losing hours with other services,” Fernandez said. “I just didn't think something as prominent as ABA would be affected.”
Colin is completely nonverbal. ABA therapy has helped him make progress he wouldn’t otherwise have accomplished, she said.
“We were able to put him into swim lessons now because he can take direction, and he got his tadpole certificate,” Fernandez said.
He now eats dinner with his parents and is working on brushing his own teeth.
“Maybe we're not where other 5-year-olds are, but we're getting there through ABA,” his mother said.
Lawsuit asks for pause
Colin’s insurer, Mercy Care, has decided to drop his ABA provider from in-network coverage, meaning he now needs to switch providers or his family needs to pick up the cost.
Colin’s family joined 10 other Arizona families in a lawsuit filed earlier this month.
“We desperately hope that the courts can step in and order Arizona's Medicaid program to ensure that every family on Medicaid has access to the care that they need and that their doctors have determined is necessary,” said Michael Easley, one of the attorneys representing the families.
Federal law requires states that administer a Medicaid program to ensure that managed care organizations like Mercy Care operate “in a way that actually gets people real and meaningful access,” he said.
The lawsuit argues that the network of care isn’t adequate.
“We want to be sure that every kid in every corner of every county in Arizona with autism has a fair shot in life and the access to the care that federal and state law requires,” he said.
The families are asking the court to pause the terminations so that every family receiving ABA therapy can continue that care and have time to get access to an alternative provider.
Fernandez learned in November that Mercy Care had terminated its contract with Colin’s provider and coverage would end on March 28.
The waitlist for an ABA provider is typically anywhere from six to eight months, she said. Other providers on Mercy Care’s list only offer in-home services, and she said some have told parents Mercy Care is slashing their contracts or services as well.
“It was not enough time, not enough resources, and not enough guarantees that there wouldn't be lapses in coverage,” she said.
Her family is choosing to keep Colin with his current provider – and pick up the cost. The expense means Fernandez is going without health insurance for herself.
“I really don't think keeping stable care should depend on if you can afford close to $700 a month for a single policy,” she said.
A hearing in the lawsuit is scheduled for March 3.
Fernandez said ABA therapy isn’t a luxury for kids like her son.
“He's so worthy of being out in public and in the open,” she said. “He just needs this early intervention to get there, as most of these kids do. Early intervention has been so helpful for Colin.”
