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.The same paper, however, reports on success as well:
Not all rural families in the program have faced delays and struggles in finding reliable, qualified providers. The Kartchners live in Monticello, a tiny town in the far southeastern corner of Utah near the Navajo Reservation.
A board-certified behavior analyst regularly checks in via Skype, providing feedback to his tutor and parents, and tweaking his therapy plan.
In five months he has gone from being nonverbal to saying "momma" for the first time, said Kartchner. "He’s requesting things and no longer needs the communication app on his iPod."
In rural Utah, said Kartchner, "We have to be realistic. We have this great opportunity, and I’m going to do as much as I can to make it successful."