FRANKFORT — Tyler Hall's autistic 2-year-old son could speak only a few words in January 2012 when he entered the Highlands Center for Autism in Prestonsburg.
More than a year later, the 3-year-old has learned dozens of new words and can dress and feed himself. His parents also can do something new: "We can go out to eat," Tyler Hall said. "None of this would have been possible without the center."
But the Halls and a dozen other parents of children attending the Highlands Center are struggling to get their health insurance companies to pay for treatment of their children three years after a state law was passed that requires large insurance plans to pay for autism-related treatments.
"The amount of effort used to try to get around what they are supposed to do is mind-boggling," said Hall, who moved from Lexington to Prestonsburg so his son — and now his nearly 2-year-old daughter — can attend the Highlands Center. "It's an injustice to these families and to the center."
Digital Access For Only $0.99
For the most comprehensive local coverage, subscribe today.
When the General Assembly passed House Bill 159 in April 2010, Kentucky became one of 17 states that mandate insurance coverage for treatment of autism, a spectrum disorder that is characterized by impaired social interaction and communication skills.
The bill, which took effect in January 2011, required large group insurance plans to pay for autism-related therapy — up to $50,000 a year for children ages 1 to 6 and up to $12,000 a year for kids ages 7 to 12. In particular, it required coverage for a costly therapy called applied behavioral analysis — an intensive one-on-one therapy that uses behavioral techniques to teach children skills.
"It made everyone feel really great," said Shelli Deskins, director of the Highlands Center. "The legislators, the providers, families and everyone involved thought this would finally help kids with autism. But there are still families that are trying to get reimbursed for something that this law entitles them to."
In particular, insurance companies have balked at paying for services in an institutional setting such as the Highlands Center and the Academy at St. Andrews, a private school for autistic children in Louisville. Generally, insurance companies are not required to pay for treatment that is viewed as educational rather than medical.
"It's a loophole in the law," said Dr. Mark Miller, whose autistic daughter attends St. Andrews.
The school does not bill insurance for treatment, but Miller and his wife — who also is a doctor — tried to submit claims to Anthem Blue Cross and Blue Shield and United Healthcare for their daughter's treatment at St. Andrews.
Those claims were repeatedly denied because St. Andrews is a school, Miller said.
"It was unbelievable," he said. "I'm a doctor. I know how to fill out an insurance claim. I know how to get the codes to bill for services. But there were so many hurdles. They put up such a wall of requirements. It has to be this type of therapist, and it has to be at this type of facility, and it has to be communicated with us in this type of way."
Parents shouldn't have to jump through so many hoops and submit multiple documents multiple times, he said.
"It's a mandate," Miller said. "The law says that they are entitled."
Kentucky's largest insurance companies — Anthem, United Healthcare and Humana — deny that they have intentionally blocked coverage mandated under HB 159. It took time to establish a system for processing autism treatment claims, particularly those for applied behavioral analysis, the insurance companies said.
At first, the companies denied claims for applied behavioral analysis if it was not provided by a certified practitioner. Most treatment plans are overseen by an applied behavioral analysis specialist with a master's degree or doctorate, but the one-on-one treatment is generally provided by someone with less educational experience.
United Healthcare initially denied claims because it wanted to ensure payment would go to someone qualified to provide proper treatment, the company said in a statement to the Herald-Leader.
After receiving multiple complaints, the Kentucky Department of Insurance in May 2012 issued an advisory opinion that said applied behavioral analysis was covered under HB 159 if the person providing the one-on-one treatment was supervised by a board-certified specialist.
Insurance companies then began paying claims for treatments delivered at home or during office visits.
A spokesman for Anthem said the company will reprocess the claims of anyone denied payment before the May 2012 opinion from the Department of Insurance.
"House Bill 159 is a complex piece of legislation," said Anthem spokesman Tony Felts. "We've spent hundreds of hours on this. We even had to reprogram our computers."
Meanwhile, the dispute with insurance companies continues for parents whose children are treated in an institutional setting.
At first, Anthem and other insurance companies told parents of the 10 students at the Highlands Center that the companies wouldn't pay for treatment because of questions about applied behavioral analysis, Deskins said. Then the insurance companies said they would not pay for treatment because the Highlands Center is a school, she said.
Felts said Anthem has worked with the Highlands Center and believes it has resolved the issues surrounding disputed claims. Deskins said she also thought the dispute was resolved in January, "but we haven't had a claim paid yet."
Mitchell and Denise Crum, parents of a child who attends the Highlands Center, sued Anthem in federal court in 2012 for failing to pay for services provided by the center. The lawsuit is pending.
For some parents, reimbursement from an insurance company might come too late.
Heather and Will Dales had to take out a bank loan to cover the cost for their 6-year-old son to attend the Highlands Center. The family, which owns a house in Virginia and rents a house in Prestonsburg, has insurance with Anthem and Humana and has been trying to get reimbursed for their son's treatment since the law took effect in January 2011.
Friends, family and strangers have helped the Dales family raise money for treatment, and they receive scholarship money from the center, but the bills are adding up, Heather Dales said.
"If they don't start paying for treatment soon, this will be Hunter's last year at the center," she said.