"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.