Mattie Lewis still has her “autism moments.”
She recites TV shows she’s seen, line by line, watching them in her mind’s eye. We’re not watching TV now, her parents remind her. Time to turn it off.
Loud previews bother her at the movies, so she and her mother sit on a bench outside the theater while her father and twin brother, Charlie, save seats until the feature begins.
She doesn’t quite get sarcasm, or meanness.
“It’s that naiveness that is really good,” said Mattie’s father, Rick Lewis, “and at the same time kind of heartbreaking.”
But at 6, Mattie is a first-grader in a mainstream classroom at Sunrise Elementary School in Spokane Valley – light-years from the nonverbal, mostly immobile 2-year-old who was diagnosed with autism in 2008. She walks, she talks, she rides a bike, she plays dress-up in bright dresses and big hats. She reads at a third-grade level.
The changes, her father said, are largely due to Applied Behavior Analysis, or ABA – a way of treating children with autism that considers the child’s environment as it relates to their behaviors. Change the environment, the idea is, and you can change their behaviors. ABA makes consistent use of positive reinforcement and can help children learn skills as varied as communication, toothbrushing and going to bed on time. The treatment is widely recognized as effective.
Lewis and other advocates for people with autism welcome the recent settlement allowing children in low-income families to receive ABA treatment through Medicaid programs.
But, in the wake of the deal announced last month, they’re also citing a shortage of trained ABA providers – in Spokane, just a few professionals are nationally certified to provide the treatment.
Another sticky point: According to state regulation, those certified professionals lack the proper licensing to provide the treatment and be reimbursed by Medicaid. Meanwhile, the people who are technically licensed to get paid for ABA treatments aren’t necessarily trained in it.
Those will be among issues for regulators, providers and families to navigate as a series of lawsuits against private insurers are carried out and more insurers begin to cover the treatment.
Microsoft was an “early convert,” voluntarily offering ABA coverage for employees’ families, said Scott Crain, an attorney with the Northwest Justice Project, which represented the plaintiffs in the Medicaid lawsuit. ABA is also covered under the U.S. military’s health plan for service members.
Multiple lawsuits against private insurers operating in the state seek ABA coverage for others, and some cases have ended. ABA coverage by Group Health, for example, will take full effect Jan. 1, said Eleanor Hamburger, an attorney at Sirianni Youtz Spoonemore, a Seattle law firm handling several ABA cases against private insurers.
“There’s sort of a wave of litigation that’s changing the landscape of how this service is viewed by insurance companies, and we’re seeing more and more insurance companies delivering it,” Crain said.
‘A historic event’
Under the deal reached this fall by the State Health Authority in a lawsuit brought by Washington Autism Alliance & Advocacy, ABA will be covered for children who qualify for Medicaid, such as those in the Apple Health for Kids plan. The settlement takes effect Jan. 1.
Crain will speak at a workshop in Spokane on Thursday about how children on Medicaid can qualify for ABA coverage and how the changes will affect providers. Another workshop is planned for January for families with private insurance.
“Primarily, the difference is because this is a benefit that’s now covered by Medicaid, it’s medical insurance,” Crain said. “So it has to be provided by people who have some level of oversight by the Department of Health, as opposed to people who are educators, for example.”
The settlement represents a turning point for children on the autism spectrum and their families, said Dawn Sidell, executive director of the Northwest Autism Center in Spokane.
“To me, this is a historic event,” Sidell said.
That’s not only because more children can begin to receive treatment, she said. The fact that their care will be covered, she hopes, means more qualified providers will work here.
There are four people in Spokane who are nationally certified to provide the treatment, as far as Sidell knows. One of them is a professor who isn’t treating children, and the other three are maxed out on clients.
“In Spokane, ABA treatment is water in the desert,” Rick Lewis said. “It’s scarce, to say the least.”
If a child on Medicaid who needs ABA can’t find a provider locally, “they have the right to be transported to where they can get it,” Sidell said, whether that’s the West Side or elsewhere.
The autism center is working to help bring together entities – including hospitals and universities – to improve treatment for children with autism, including getting more board-certified analysts working in the area, Sidell said.
In the meantime, the Northwest Autism Center and other organizations are urging state legislators to create a new category of licensing for nationally certified ABA providers, called board-certified behavior analysts, or BCBAs. Sidell said that would allow those professionals to bill Medicaid programs for their services while providing “quality control” over ABA treatment.
“In our state, because we don’t have a licensing category for that professional, there isn’t a structured set of expectations or oversight in place for the practice of ABA,” Sidell said. “So it varies depending on who you hire. … Their background varies, their education varies, and how they choose to implement ABA also varies significantly.”
Dana Stevens oversees the Domino Project, a 25-hour-a-week, year-round program for young children with autism and an equal number of “peer models” who don’t have autism. Housed at Eastern Washington University in Cheney, the program is based on ABA principles.
Stevens is one of the few board-certified analysts working in the area. She said BCBAs have earned at least master’s degrees and completed additional ABA courses along with 1,500 hours of work under direct supervision of another certified analyst – before qualifying to take a standardized exam.
But at this point, she said, Stevens wouldn’t be able to bill Medicaid for ABA treatment. To do so, she’d have to become an “agency-affiliated” mental health counselor, she said; unlike BCBAs, counselors and certain other professionals can provide the treatment and get reimbursed by Medicaid. The problem, she said, is that mental health counselors, for example, often lack the specific education, knowledge and experience to do ABA.
“It’s a different practice,” Stevens said.
A changed child
At 2, Mattie Lewis barely crawled. She would stand at a window for hours, her father said, banging her hand on the glass.
She was 2 years and 3 months old when she was diagnosed with a neurodevelopmental encephalopathy, the latter a word her father – an auditor at a Spokane bank who keeps thick files on her treatment – still has trouble pronouncing. What it meant in her case was autism, along with “global developmental delays” and “mild neuromotor dysfunction.”
To hear the diagnosis was devastating, Rick Lewis said. To plan a course of action – to find treatment for Mattie – was confusing and overwhelming.
He and his wife, Jennifer Lewis, enrolled their daughter in a school for children with autism in Sterling, Va., where they lived at the time. It was later, when they added after-school ABA, that they began to see significant, rapid improvements.
It took some luck to get an ABA provider for Mattie, her father said. A spot happened to open because another child’s family – neighbors of the Lewises – was moving away.
It also took a lot of money. The Lewises’ insurance didn’t cover ABA. They paid out of pocket. Lewis didn’t want to say how much it cost, but it was “everything I had,” he said. “We went through everything.”
Treatment cost depends on how much you’re getting and who’s delivering it. Sidell said it costs at least $20,000 to $25,000 a year. For some families, she said, it’s $35,000.
It’s an intense treatment that must be consistently provided to work, Sidell said: “It’s not something you can do one or two days a month and call it good.”
After Mattie’s diagnosis, Rick Lewis said, he viewed his family’s situation as a “countdown to Armageddon.”
In general, the earlier a child with autism receives treatment, the better the results.
“You basically have till they’re 5 to make a major impact on this child,” he said.