Mother of boy with autism fights Anthem insurance decision

Jenny Rice with her 8-year-old son, Canyon, who has autism.
Mother of boy with autism fights Anthem insurance decision
Mother of boy with autism fights Anthem insurance decision

The numbers are staggering: One-in-50 children are now diagnosed with Autism Spectrum Disorder each year. Intensive therapy can cost as much as a mortgage. One of the country's top insurers, based here in Indiana, is significantly reducing full time treatment.

A local mother is speaking out and fighting back in a costly battle over caring for her son and children like him.

Crying out in a world he can't understand, 8-year-old Canyon Rice is having a meltdown.

His piercing screams and attempts to harm himself are common.

Canyon has severe autism, a mysterious brain disorder that impacts millions of children, all differently. In Canyon's case, he can't form words. His inability to communicate often leads to behavioral problems, like hitting, biting and scratching.

His mother Jenny wants therapies to improve Canyon's life. At home, she's found at least one to help silence the outbursts - water. It's a calming force for Canyon as he sits in the bathtub flicking the water with his fingers and pouring it over his head.

At Cornerstone Autism Center in Greenwood, Canyon gets intensive, one-on-one therapy known as "ABA", or Applied Behavior Analysis.

In three years of treatment, Jenny notices audible improvement. Canyon can now make the "p" sound.

"He didn't have any sounds before he started," his mother explained.

But that's not enough progress, according to a letter from Canyon's insurance carrier, Anthem. The company has put Jenny on notice. In January, Anthem will stop paying for "full time" ABA therapy as requested by her son's doctors.

According to Anthem's letter, 40 percent of the full-time ABA treatment credited for his improvement is no longer a medical necessity for Canyon, saying, "There is concern that he may be reaching a plateau... His skill level and behaviors may not significantly improve."

Based on Anthem's decision, Canyon's ABA Therapy will go from 34 hours a week down to 20.

"It was heartbreaking," said his mother, starting to cry.

The insurance company says Canyon can get some of what he needs for free in an appropriate public school setting under the Individuals with Disabilities Act.

Canyon is considered a home-schooled student. Anthem contends he does not need ABA services as part of that.

"How in the world you can give up on a kid at that age is beyond me," Jenny said, questioning how the insurance company can determine her son is incapable of learning.

Ken Weadick, the chief clinical director at Cornerstone, where Canyon gets therapy, says the center provides services for children with more severe forms of autism, requiring more therapy. He believes children should transition out of those services when ready, not simply because a child is school-aged or progressing slowly.

"A set age at which service is no longer viable, or at which someone would suggest (a child) could not learn, is absolutely an invalid approach to take," Weadick told 13 Investigates.

"ABA is Canyon's lifeline and ABA is the gold standard for kids with autism. It gives Canyon the best chance," added Jenny, her voice wavering as she choked back tears.

She filed a formal complaint with the Indiana Department of Insurance.

"I thought there's no way they can do this and I'm going to fight," she said.

Parents like Army Major Brian Alverson are also concerned about affordable ABA therapy, a treatment not offered in public schools.

"There are individuals that think every child needs to attend school, one size fits all approach for children" said Alverson, who spoke to the Indiana Autism Commission about his 14-year-old daughter Annabrooke and her disastrous move from an ABA program into a public school setting.

"The school system willfully locked Annabrooke up in a room and watched her hit herself 100 times while they were taking data collection," he said, welling up with emotion.

Annabrooke is also diagnosed with severe autism.

"As her father and a soldier, I said enough is enough," he said defiantly in his daughter's behalf.

Alverson says he chose Anthem because of the services it provides under Indiana's autism mandate, one of the first in the country. It requires companies selling insurance in the state to provide coverage for the treatment of autism prescribed by a physician deemed medically necessary.

Read Anthem's statements

So why is the Anthem reducing ABA coverage and pushing children towards public school settings?

State Senator Tim Skinner (D-Terre Haute) is a retired educator who believes public school special education programs work, but not for children with more severe autism. He questions whether efforts to curb insurance costs are instead creating inappropriate placements. 

"I understand the dollars and cents of insurance, and if Anthem is responsible for making the (determination), you're not going to readily want to do that," Skinner said, speaking to John Willey, Anthem's senior vice president of communications, who took questions on behalf of Anthem.

Annabrooke is back in ABA therapy. Now, the Alversons are trying to work with Anthem on the cost.

"In Annabrooke's case, absolutely it probably doesn't make sense for her to be in that school setting," said Willey.

But what about Canyon? The Indiana Department of Insurance ruled Anthem was within its rights to reduce his coverage.

13 Investigates asked Anthem to explain. The insurance company refused an on-camera interview, but in a statement said, "Full-time ABA treatment is not intended to be a substitute for the educational opportunities provided through the school system...Partial authorization of services is not a violation of the mandate."

Anthem does not dispute Canyon's behavioral and developmental problems, but said, "Anthem medical staff are concerned that his rate of progress is slowing down."

Overall, Anthem admits it's concerned about rising "fraud and abuse," saying it, "unfortunately has risen along with the increase in autism treatment services."

The bottom line is a concern about increasing costs.

"The incidence of autism has gone from 1-in-10,000, to now the CDC is saying it may be as high as 1-in-50," said Dr. Cathy Pratt of Indiana University.

Pratt has been on the forefront of autism treatment for 40 years. She is certified in ABA therapy and the Director of the Indiana Resource Center for Autism at the Indiana Institute on Disability and Community at IU and provides training worldwide on autism therapy.

"With these children going to these ABA centers, the cost to the insurance industry has been massive, and so there is some push back from that, right or wrong, it just is the reality," Pratt explained.

So far this year, Canyon's ABA treatment alone totals more than $85,000 dollars.

"It's worth every penny," said Rice, defending the impact of the therapy.

Dr. Pratt says the autism community's own early misinformation is now an excuse used to reduce coverage for children age eight and up.

"I think that that's where the autism community shot themselves in the foot," said Pratt. "What professionals told families is that there was a window of opportunity closed at eight, and if you didn't get your child by the age of eight, that they weren't going to learn anything else," she told 13 Investigates. "I'm much older than eight and I'm still learning."

She emphasizes the need to give children with autism time.

Jenny Rice agreed and said her son is still learning, too.

"To say that this kid has (reached a plateau) is ridiculous," she told 13 Investigates.

Jenny is now paying out of pocket for recreational opportunities not covered by insurance, like swimming lessons for Canyon. She's trying to do what she can to give her son quality of life, yet she's disheartened that Indiana's largest insurance company is pulling back on the quantity of costly full-time, evidence-based therapy that could help her son combat a puzzling lifetime diagnosis.

Anthem says it paid ABA therapy claims for a thousand children last year. That therapy can cost as much as $120,000 dollars per child.

Jenny is appealing her case with the help of the ARC of Indiana Insurance Project.

Anthem statements

Links to resources

ARC of Indiana Insurance Project
Autism Society of Indiana
Indiana Resource Center for Autism
Indiana Department of Insurance Consumer Services
National Autism Center
Autism Companion Magazine Indianapolis