Landon DeLisi is an exceptional boy.
Like any mother, Melissa DeLisi kept track of his milestones.
“When he was two years old he had 100 words. He knew his alphabet. He could count from one to ten in Spanish and he knew his colors.”
In a matter of months, it was all gone.
“When he lost his language we knew that something was the matter,” says Melissa.
Landon was diagnosed with autism and the DeLisi family was forever changed.
“It’s just not the what you thought your family would be like,” says Melissa. “It’s almost like having an infant, but in a nine-year-old body.”
But instead of dwelling on their loss, the DeLisi’s decided to focus on what Landon might gain from therapy.
“The first thing we read about was Applied Behavioral Analysis.”
ABA is the only research based therapy for autism. Steve Muller, the Executive Director of the Homestead, where Landon receives therapy, says it’s a method of applying early intervention.
“ABA is recognized across the country as being the most effective strategy for these kids to become more integrated in their community, successful at schools, more productive at home.”
“This is his voice,” says Landon’s therapist as she points to a book filled with velcro pictures. “He flips through this book and on each page there is a picture and words that go along with that picture of what he desires.”
Landon uses the book to tell the therapist he wants to listen to music, if he needs a break or if he wants to go for a walk.
“He does learn,” says Melissa. “But it’s at a Landon pace, which can be very, very slow, but he shows progress.
That progress comes with a price tag. The DeLisi’s pay about $10,000 a year, out-of-pocket, for Landon’s therapy. Their insurance covers up to $36,000 a year – or at least it did.
“As time wore on , the coverage of claims was slower and slower and there was a larger backlog, and it took until April of this year to get all of 2012 handled,” says Matt DeLisi, Landon’s father. “And then, in May they stopped paying entirely.”
The DeLisi’s were confused, to say the least, because Matt is a state employee. In 2010, the legislature passed a law giving all state employees insurance coverage for autism, specifically ABA therapy.
“There’s been no change in the law, but there’s certainly been a change in perception from Wellmark,” says Matt.
Wellmark is the insurance administrator for the state. In a letter to Wellmark last August, the Iowa Insurance Division directed Wellmark to “establish and implement procedures to pay for statutorily covered autism services.” It also directed Wellmark to “implement and establish new procedures as quickly as possible due to pending claims.”
Wellmark representatives say the statute is “complicated” and they have questions about exactly who can provide ABA therapy. In Wellmark’s response to the Insurance Division, it asks for further “clarification and guidance” on matters such as “educational and licensure/certification requirements of such “others” for whom certified behavioral analysts may act as supervisors.”
“The insurance company doesn’t want to pay for those services or doesn’t know how to pay for those services when the Board Certified Behavioral Analyst isn’t sitting across the table from the child,” says Muller. “And we don’t understand that when other insurance companies pay for that service.”
Muller says while the state, Wellmark and the Insurance Division hash this out, time is running out for children like Landon.
“It’s time to do it. It’s time to do the right thing. There`s no reason for this to be extended any longer. It`s so critical that we work with these families and children at an early age.”
Ladon only has a few weeks. His therapy is scheduled to stop on December 1.
“This isn’t a head cold or allergies, this is autism,” says Matt. “And when you see what this disease is like and then you see the progress made, it just seems unfathomable why you wouldn’t cover it.”
Wellmark doesn`t lose money by paying the claims because the state is self-insured, the insurance company is just the administrator for the state.