LAYTON — Many families in Utah play a constant balancing act for their autistic children: seeing positive results from providing consistent physical, social and behavioral therapy, and finding ways to pay for it.
The National Institute for Mental Health defines autism spectrum disorder as a developmental disorder that affects communication and behavior — for many, symptoms generally appear in the first two years of life. Many can join the public education system and live productive and fulfilling lives, most of the time in conjunction with intensive therapy.
Roughly 1 in 54 kids in Utah has autism, according to the Utah Autism and Developmental Disabilities Monitoring Project.
The Centers for Disease Control and Prevention estimated the annual costs of intensive behavioral intervention at $40,000 to $60,000 per child. According to the National Conference of State Legislatures, 46 states plus the District of Columbia have laws requiring insurance coverage of autism services, Utah among them.
Medicaid covers autism spectrum disorder treatment up to age 21. For those who don’t qualify for the federal program, insurance help might stop much sooner.
Utah’s law requires individual and large-group health insurance providers to cover treatment for children ages 2 to 9 years. That treatment includes behavioral therapy and pharmaceuticals as well as psychiatric, psychological and therapeutic care.
But once a child is 10 years old, insurers no longer have to cover autism treatment in Utah, even if the need for it doesn’t end.
Natalie Cliften, co-owner of Catalyst Behavior Solutions in Layton, is a board-certified behavioral analyst and directs applied behavior analysis programs.
The programs, Cliften said, are all about finding what motivates the person and reinforcing positive behaviors. A common misperception is that treatment “fixes” problem behavior.
“The saying is that if you’ve met one child with autism, you’ve met one child with autism,” Cliften said. “Every kid is different. But the older they get, the more behaviors get ingrained.”
As a toddler, Connor French’s allergies to milk, soy, egg, wheat and peanut products posed a huge challenge. The little boy was losing weight and was often sick.
“So I wasn’t paying much attention to his (developmental) delays because I was so worried about his weight,” his mother, Rachel French, said during an interview at Catalyst Behavior Solutions. “But a friend asked if I’d noticed that Connor didn’t make eye contact, that he lined stuff up.”
He did love to line his foam cars up according to size and color. And playing with other kids or toys didn’t seem to interest him at all. Plus he had yet to talk.
Story continues below photo.
So at 3 years old, Connor underwent testing that showed he was “100 percent across the board autistic,” French said. Through consistent applied behavior analysis therapy, he began speaking at age 5.
“This year he’s starting to get super verbal, which is brand new for us and kind of crazy,” French said of her now-9-year-old son.
Prior to his diagnosis, Connor also inflicted self-harm.
“He’d slam his head into the wall, the floor — or into your head,” French said. “He would bite his forearms until they were bleeding and bruised, and he would just shriek and shriek.”
Add to this the fact that French and her active-duty military husband have three other children ranging in age from 3 to 11 years. Their child-rearing journey has not been easy, but they’ve learned to savor wins in whatever form they come.
“It seems like none of my kids want to eat dinner ever, and there was one particular day where they were saying it wasn’t good, they didn’t like it, they weren’t hungry or whatever,” French said with a wry grin. “Connor tried it, pushed his plate away and yelled ‘Mom, this is garbage. I’m not eating this garbage.’ And I wanted to be mad, but my husband reminded me it was two sentences I wouldn’t have heard a year ago.”
Fortunately, Connor’s treatment is covered by the military’s Tricare insurance.
“I know families who have taken out mortgages to pay for ABA, and I’m so thankful I don’t have to do that.”
STORIES OF SUCCESS
During a recent session, 14-year-old James Jordan of Syracuse described what eight years of therapy has done for him so far.
“It’s helped me socialize more and get to know myself better. And to find my place in this world,” James said.
By next fall, Cliften expects to see James totally mainstreamed in all of his junior high classes because his behavior and coping skills will match up with his academic ability.
Story continues below photo.
Brigitte Ferguson lives on Hill Air Force Base with her active military husband. She supervises Catalyst’s therapy programs, and she is also mom to an autistic daughter and son.
Ferguson’s daughter Jocelyn, now 5 years old, will enroll in regular kindergarten this fall.
“Two years ago when she started ABA, she couldn’t talk and she wasn’t interested in other kids,” Ferguson said. “And now she’s a social butterfly and speaks in full sentences. She blows me away with her vocabulary. Now she argues with me.”
A recent assessment indicated she might no longer qualify for an autism diagnosis because her behavioral deficits have all but disappeared.
“From the first minute, ABA therapy was a huge relief for me as a mother . . . skills started developing, and it got easier to calm her down when she got upset. She was more tolerant of situations that she had no tolerance for before,” Ferguson said.
THE WORK AHEAD
Kathy Ford of Syracuse retired from the Air Force last November. Her son Kahvon, 15, was diagnosed with autism at age 9.
“We’ve been in ABA therapy since we got the diagnosis, and it’s made a world of difference,” Ford said. In particular, transitioning from fun to necessary tasks, such as switching from playing games to doing chores.
Kahvon has a 1-year-old brother, and Ford said that applied behavior analysis prepared him to hold a baby and deal with crying.
“We’d have been a crazy house without ABA therapy,” Ford said. “They help me bear the brunt of a lot of the issues I have to deal with. Lord knows, I’ve come up with a lot of stuff on my own, but they’ve given me a different perspective and ideas on how to deal with certain things — so it’s not a black-white situation.”
But retirement ushered in reduced pay and more out-of-pocket costs for Kahvon’s therapy. To adapt, the Fords reduced Kahvon’s therapy hours to only four per week and eliminated his cognitive behavioral therapy sessions altogether.
Heather Blair, a mental health therapist who co-directs Catalyst, said that in roughly 30 percent of autism cases, a mental health condition also comes into play — with anxiety and attention deficit hyperactivity disorder the most prevalent of those coexisting conditions. The cognitive behavioral therapy sessions focused on those aspects.
“It’s helpful for families to be able to access both services in the same place,” Blair said.
Like many insurance providers, Tricare recently underwent several changes, which interrupted payments to some providers.
“With this insurance changeover, they haven’t credentialed all our providers,” Cliften said. “So we’re not able to bill for pretty much any service. We’re almost four months into the changeover, and we had to make the decision to reduce hours.”
Kiersten Owens of Kaysville learned her son Jackson was autistic when he was 2 1/2 years old. Now, seven years later, he’s about to hit that double-digit mark where insurance can discontinue coverage of his treatment.
Jackson began applied behavior analysis therapy at age 3 — he didn’t start talking until about 6 1/2 years old. It began with one word here and there, Owens said, and “now he can use up to four words,” his favorites being Disney movie quotes.
Story continues below photo.
“We can’t function without ABA therapy. They’re our support team,” Owens said. “I feel he has a future now, and before he started, I didn’t feel that way.”
Unfortunately, their SelectHealth plan does not include Catalyst Behavior Solutions in its provider panel. Owens said that SelectHealth covers 60 percent of their out-of-network costs and they pay the rest. Reluctant to switch providers, the Owens trimmed treatment to two sessions per week — three hours of applied behavior analysis therapy plus two hours of social skills. And with help from both sets of Jackson’s grandparents, they’ve kept pace with out-of-pocket costs each month.
“When we first started, he had three hours, five days a week, and that’s when we saw the most progress,” Owens said. “...And after he turns 10, I don’t know what we’re going to do — he still has a long way to go.”