CHARLESTON, W.Va. -- Wally Aman drove from Wheeling to the state Capitol Monday to deliver a message to state lawmakers: Autistic children across West Virginia are missing out on important treatment services because of a last-minute change to the state's new autism insurance law last year.
Aman's 5-year-old twins, Thomas and Joseph, aren't receiving speech and occupational therapy -- services that would help them, he said.
"The unanimous passage of the autism bill last year gave parents who have children with autism hope," Aman said. "But because of a last-minute change in the wording of the bill, we have insurance for autism therapy that won't pay for autism therapy. We just want what our children were promised."
The new law allows health insurance companies to cap the amount they reimburse families for all autism services at $30,000 a year.
A previous version of the legislation put a $30,000 cap on only on behavior services -- the treatment considered most effective for autism.
Parents with autistic children typically spend more than $30,000 a year on "applied behavior analysis," or ABA, Aman said. So the cap forces families to pay out of pocket heir children's speech, occupational and physical therapies, and prescription medications -- or drop those services altogether.
This year, Aman and fellow autism advocates are supporting a "clean-up" bill (HB4260) that would fix last year's law and allow autistic children to receive expanded benefits.
"This year's fight is to get back what they promised us last year," said Cindy LeGrand, a speech therapist with Bright Futures Learning Services in Charleston. "The language was modified at the 11th hour last year."
Health insurance companies in West Virginia oppose modifying the $30,000 cap on all autism services, saying last year's legislation was carefully negotiated and passed.
State Sen. Evan Jenkins, D-Cabell, disagrees.
Jenkins, executive director of the West Virginia State Medical Association, said he and other lawmakers believed the cap applied only to behavior therapy when they passed the bill last year.
"Nobody is saying the interpretation of the insurance industry is the right one," said Jenkins, who joined parents at Monday's press conference. "[Children with autism] deserve every opportunity to have an exceptional life."
The law passed last year required public and private insurance to cover treatment for autism for the first time. West Virginia became the 25th state to mandate autism coverage.
The law sets caps at $30,000 annually for the first three years, and then $2,000 a month until age 18. Children can be diagnosed as early as 18 months of age.
Before the legislation passed last year, an analysis by the state Public Employees Insurance Agency said the $30,000 cap would apply only to behavior therapy.
However, PEIA now takes the position that the cap applies to all autism services. The state-run Children's Health Insurance Program does the same.
Aman said he gave up his job with Verizon, and he and his wife moved from Huntington to Wheeling after his sons were diagnosed with autism. Aman's boys attend a special school for autistic children there. His sons' behavior modification services cost $36,000 each annually, he said.
"We've had to pull our boys out of speech therapy so it doesn't go toward the cap," Aman said. "Kids aren't getting all the therapies they need."
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