Utah families question quality of care in autism experiment
Castle Dale • Mary Kava's home bears the hallmarks of life with an autistic child.
Child-safety locks guard cabinets and doors. A key to the front door dangles out of reach, high on a hook. A red stop sign steers curious hands away from the fireplace.
And a corps of watchful neighbors stands at the ready on days when 3-year-old Jason Jr. tests his limits. "That's one of the benefits of living in a small town," said Mary Kava, J.J.'s grandmother and part-time caretaker.
But there are downsides, too which some rural Utah families in an experimental autism treatment program have keenly felt.
The Kavas had high hopes in November when Jason became one of 277 Utah children picked in a lottery to receive free applied behavior analysis (ABA) therapy through a Medicaid pilot program.
But it took four months for them to complete paperwork, for the state to link families with providers and for Utah Behavior Services to find tutors willing to travel to southeastern Utah.
Then the company quit treating J.J. three months later, after his father questioned the quality of its care.
The tutors, both formerly stay-at-home-moms with no experience and minimal training, "would drive around town and go to Maverik and buy soda to see how he behaved. That was supposed to be social time," said Jason Kava, a single, working dad.
One woman "was hauling him 30 miles to her house, sometimes without notifying us," he said.
Except for an initial assessment, none of the sessions was observed by a certified ABA therapist, the Kavas said, and the tutors frequently failed to show up for the 15 hours of weekly therapy J.J. was scheduled to receive.
Now he's awaiting therapy from another provider, Chrysalis. "They said they're working with another family in Price and will get to J.J. if they have time," Jason Kava said.
Utah Behavior Services declined to discuss J.J.'s care, even with the family's permission.
Tonya Hales, who oversees community-based Medicaid services for the Utah Department of Health, acknowledges barriers exist for rural families. But early delays in care were unavoidable because providers didn't have the staff to immediately respond to dozens of families suddenly seeking services, she said.
On June 1, there were 20 families still waiting for their first therapy visit, she said. By the end of June, there were six, some due to tight family schedules or a switch in providers. Initially, Carbon, Emery, Grand and San Juan counties didn't receive enough applications to fill their allocated number of slots.
Reporting early progress to Utah lawmakers will be a challenge, Hales said. "But I think we'll have a baseline measurement and six-month update for about 150 to 170 children by this fall."
Most rural and urban families in the pilot program report great satisfaction, she said. "We're happy with the way the program has gone, considering the complexity of it."
No 'one-size-fits-all' solution • J.J. blows bubbles on his grandma's porch, splashing his hands in the thick soapy solution. A breeze stirs the air, normally thick with heat by mid-June in this desert town.
But the coolness of the morning and J.J.'s contented mood don't last. Without warning, he bolts through the gate and throws a tantrum when Mary Kava stops him with a calm, but firm, "Freeze."
Reducing his meltdowns and teaching him boundaries to keep him safe are among the family's main goals with therapy.
ABA, the only evidence-based therapy for autism, works by positively reinforcing desired behaviors, said Martin Mosley, CEO of one of the country's largest ABA providers, Butterfly Effects in Florida.
If a child likes bubbles, for example, a tutor will offer a bubble break as a reward.
Trips to a grocery store aren't unusual as a way to help a child develop coping skills to deal with the noisy and colorful environment, he said.
"There is no one-size-fits-all solution for these children," Mosley said. "Some need help identifying colors and shapes. Some can't talk at all. It's the [certified therapist's] job to assess and map goals."
Butterfly Effects offers more than 400 treatment plans in 22 states, including Utah. Its therapists oversee four of every eight hours a child spends with a tutor.
Utah's pilot program requires 1 Â½ hours of supervision for every 15 hours of therapy, a minimum standard embraced by states that require insurance companies to cover autism treatment.
Butterfly Effects didn't participate in Utah's pilot and it doesn't accept Medicaid, Mosley said, citing the low payments. That's part of the challenge for rural Utah families, said Mirella Petersen, who just stepped down as president of the Utah Autism Coalition. In the pilot, Medicaid is paying providers about half the going rate, creating a Catch-22 for those hoping the results will sway lawmakers to mandate coverage.
Some conservatives argue against a mandate because they say there are no providers in remote areas, she said. "But to attract quality providers, you have to pay competitive rates."
Parent support group Autism Speaks points to Louisiana, where the number of certified ABA therapists grew 10-fold starting with four within two years of the state's 2008 insurance mandate.
Although he feels like he's reached a "dead end" with Utah's pilot, Jason Kava is grateful for any help. Born in Minnesota, J.J. was diagnosed early by a team of doctors, therapists and educators.
After his divorce from J.J.'s mother, Jason Kava moved in with his parents in Castle Dale, which allows him to work nights at a local Wal-Mart and access its health benefits.
He hopes to eventually finish an engineering degree, once J.J. is potty-trained, gets a jump on his shapes, letters and numbers, and is ready for mainstream school.
'Our state can do better' • Angela Vasquez, of West Jordan, was excited when her daughter, Lucy, was chosen for the pilot. "I wanted to be the first out of the gate to pick a provider," she recalls.
Lucy was diagnosed a week before her third birthday with "PDD-NOS," a classification health professionals often use for someone who has some but not all the characteristics of autism. The family is insured, but the plan doesn't cover the ABA therapy that Lucy's doctor prescribed.
Vasquez selected the well-established Alternative Behavior Strategies, Inc., of Salt Lake City but was told it could take a month to start services and that Lucy would have multiple tutors. She switched to Affinity Autism Services of Riverton, a start-up that offered a consistent tutor and evaluated Lucy within a week.
But her frustrations, similar to those the Kavas experienced, mounted.
The in-home tutor took personal phone calls, often left early or called in sick, Vasquez said. When she checked, she learned the tutor had neglected to notify her employer of the missed work hours. Vasquez complained to the state Department of Human Services.
The tutor, "with the knowledge of her ABA overseer, has encouraged us to do things completely unrelated to ABA, such as spend a whole three-hour shift once a week at the park," Vasquez wrote.
She put up with the "lousiness" for about three months, she said, then fired Affinity in May. For now, she has resorted to a lesson plan she cobbled together with ABA materials that she purchased online, squeezing in afternoon sessions with Lucy while her 18-month-old son naps.
She and Lucy sit at a kid-sized table and chair in the living room and begin with a calming, counting exercise to signal that it's time to learn.
They work with flashcards with images depicting actions. Lucy's job is to match the card for "ball" with the card for "kick," for which she receives lots of praise and a small treat.
"I know it's hard. It's monotonous," said Vasquez. "If others are having a good experience, bless them."
But Lucy, now 4, is still not using words to communicate, said Vasquez. A two-year pilot isn't enough for providers to bank on and invest in training and curriculum, she argues.
"It would work better if we just forced insurers to cover it," she said. "Our state can do better."
About the pilot programs
Thirty-five states require health insurance companies to cover autism services. Utah's autism community has been pushing for a similar mandate, but instead got HB272, which created three pilot programs now underway.
The Medicaid pilot will serve up to 300 children through June 2014.
Utah Department of Health is managing an Autism Treatment Account, which supported care for 29 kids in June with money from the state, Zions Bank and Intermountain Healthcare.
The Public Employees' Benefit and Insurance Program will cover up to 50 children whose parents work for state or local government.
Administrators will be tracking the cost and effectiveness of the treatments and report their results by November.
Using a tool endorsed by experts at Utah State University, children in the Medicaid pilot will be evaluated at the start of therapy and then every six months in different domains, such as their speech, logic and behavior.
By the numbers
Enrollment in the Medicaid pilot:
By age •
5 -year-olds: 44
By gender •
By ethnicity •
Families are not required to disclose race. But 12 Spanish-speaking families in the pilot requested bilingual staff.
* The totals differ due to missing information on one child who switched programs.
The providers respond
"I can tell you this program has helped a lot of families and kids. We have dozens of families we work with. We've had one family leave us, being dissatisfied. "
Justin Naylor, CEO, Affinity Autism Services
"No two treatment plans or service programs or the environments in which they are delivered are exactly alike. [ABA] is an intensive service and poses challenges that no other mental health or medical treatment compares to ... The program was designed to allow families their choice of provider and we respect and encourage that choice so families may find the best fit for their needs."
Natalie Whatcott and Sarah Sanders, co-CEOs of Utah Behavior Services
Join us Tuesday for a live Trib Talk session
O On Tuesday at noon, Jennifer Napier-Pearce will moderate a Trib Talk live video chat at sltrib.com about Utah's free autism treatment program, joined by Tonya Hales, of Utah's Department of Health, and Utah Autism Coalition President Jon Owen.
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