By EVAN DUNBAR
KU Statehouse Wire Service

OVERLAND PARK – Tara and Raul Ortega are relatively new to autism. Their son, Alex, was diagnosed with an autism spectrum disorder just three months shy of his third birthday.

The Ortega’s enjoyed 15 months of applied behavioral analysis (ABA) therapy after their son’s diagnosis.
ABA therapy involves the use of positive reinforcement. Good behavior is followed by rewards, and bad behavior is not or can be followed with other punishment. This treatment allows for behaviors to be learned in structured and unstructured environments. ABA has been used since the 1960s and is endorsed by many federal agencies including the U.S. Surgeon General.

Now there is new a new law in place that increases ABA treatment for autistic children in Kansas.

In front of a crowd filled with state legislators and autism therapy supporters, Gov. Sam Brownback signed House Bill 2744 into law Wednesday at the Kansas Center for Autism Research and Training at the University of Kansas-Edwards campus.

HB 2744 requires state-regulated health insurers to provide coverage for some autism treatment services starting 2016.

“This is an important thing to do as a compassionate society,” Brownback said. “Here is a big step being taken today in the state of Kansas.”

In 15 months, Alex Ortega received 40 hours per week of ABA therapy at KidsTLC, a non-profit treatment center in Olathe. The family saw substantial improvement in his behavior. But what the Ortega’s didn’t know was that their son was not supposed to be receiving ABA treatment.

HB 2744 provides up to 25 hours a week of ABA treatment for autistic children diagnosed between birth and age 5. After four years, coverage for therapy could be limited to 10 hours per week. Therapy is also provided for 10 hours per week for children diagnosed after age 5. The required coverage ends when the child turns 12.

But right now Alex and his family can get none of those benefits.

The Ortega’s were using Kansas City Behavioral Analysts as their treatment provider, but when they were bought-out by KidsTLC, Alex began receiving his therapy there.

“The entire staff went into (Kids) TLC to help implement the new program,” Tara Ortega said.

“We basically had the same provider, the same everything,” Raul added.

When they switched providers, their insurance company realized that it had been paying for Alex’s treatment when it should not have been – the Ortegas were not covered for ABA therapy.

“To see such a grand change in him, and then to get kicked out, it was hard,” Tara said. “Right now we are just blessed that we had it at all.”

Since the end of Alex’s ABA therapy, Tara says her son has been more aggressive, such as hitting and grabbing other students in school. Alex attends public school, and Tara says she and Raul have been called down for meetings more often to try and help teachers with Alex’s behavior.

“I’m looking at the autism specialist for the school district for answers and she doesn’t offer anything,” Tara said. “If we had the ABA we could take him to (Kids) TLC say ‘This is what’s going on in school, can you help us out?’”

Tara works for Hy-Vee, which is an Employee Retirement Income Security Act employer (ERISA), meaning that her health-care coverage is mandated at the federal level, not the state. There is no federal mandate for autism therapy coverage, which leaves the decision up to the states. The Ortega’s say this leaves them in sort of a “no-man’s land.”

Hy-Vee is a self-insured company and does not have to comply with state health care legislation. So even though this bill will require companies with 51 or more employees to provide ABA coverage starting Jan. 1, 2016, Hy-Vee will not be one of them.

Sheila Liang, senior vice president of health and wellness for Hy-Vee, said that Hy-Vee’s heath plan for its employees does cover autism and treatment for disorders, but that different severities require different treatment.

“We rely on doctors and a wide variety of sources to tell us what to cover,” Liang said. “We do cover medications and multiple treatment plans. We want to do the right thing by our employees.

Hy-Vee is in eight different state across the Midwest. Being a multi-state company, Liang said that if Hy-Vee were to follow one state’s legislation, it could violate another’s.

“We don’t want our plan to be watered down for all eight states,” Liang said. “If certain legislation happens in Kansas or Missouri, that doesn’t mean our employees in Minnesota will have to follow it.”

Not every large company has chosen to not provide ABA therapy in their insurance. Kansas ERISA employers like Garmin and Time Warner have chosen to cover ABA in recent years.

Ortega said that she has spoken with Hy-Vee at the corporate level and asked for ABA to be covered, but they have repeatedly told her to pursue other options. She said she has spoken with her developmental pediatrician, who also has an autistic child, and that she prescribed Alex ABA.

“That’s it, there is just no substitution,” Tara Ortega said.

Liang says that ABA needs to continue to be researched so that its true benefit can be determined.

“Autism is still something not everyone understands,” Liang said. “Like many kinds of treatments, it needs to be studied. If it is determined that (ABA) is valuable, there will be protocols.”

Rep. John Rubin, R – Shawnee a strong supporter of the bill throughout its progression through both chambers, said the bill is a good start for autism families needing ABA coverage.

“This bill is a major step forward, a major breakthrough, but not the end of our attempt to get autism coverage as a part of basic health insurance for every Kansas family,” Rubin said.

But for the Ortega’s, this legislation has a different meaning.

Tara said she has looked for other treatment options, but no matter where she goes or who she talks to, everything comes back to ABA.

With the passing of this latest bill, the Ortega’s say they have something new to say next time they speak with Hy-Vee.
“Having the state of Kansas pass this does help us,” Tara said. “Now we can go back and say ‘the state is covering its employees, why can’t you keep up?’ We consider this therapy to be essential in the lives of our children, and this gives us another shot.”

Evan Dunbar is a University of Kansas senior from Houston, Texas, majoring in journalism.