DOVER - Because of his severe autism, the cost of educating 5-year-old Jack Ursitti runs $100,000 a year. But unlike expenses with most medical conditions, the bills for treating him will be borne by Dover schools and the rural town's taxpayers - not his family's medical insurance.
Now, the nation's largest autism advocacy group, Autism Speaks, is planning a legislative push in 20 states, including Massachusetts, to require private insurance companies to pay a portion of the intensive, expensive educational treatments that many medical professionals say are a child's best chance to overcome, or just learn to cope with, profound and lifelong developmental and learning disabilities.
Similar laws have passed in the past several months in Arizona, Florida, Louisiana, and Pennsylvania requiring private insurers to pay toward a variety of therapies, including applied behavior analysis. That system, known as ABA, involves a weekly regimen of more than 30 hours of intense, often one-on-one, positive reinforcement techniques for teaching children how to speak, play, learn, and function in the world.
But private insurers are balking at the proposed requirement, especially coverage of the specialty ABA programs, which they say are relatively new and unproven, and not effective for all children. ABA teachers are not licensed in many states, and insurers contend that the therapy system is still too new to be regulated sufficiently.
Requiring insurers to pay for educating autistic children would "drive up costs for everyone," said Dr. Marylou Buyse, president of the Massachusetts Association of Health Plans, an industry group representing 12 health plans operating in the Commonwealth.
Health insurers should not be dragged into the educational arena, particularly to pay for ABA classes, she added. "In a sense, it's asking for a blank check for therapies that we'd want more evidence to prove are really effective," Buyse said.
But parents of autistic children are determined to get their youngsters into programs that offer even a glimmer of hope. They also want to shift society's perceptions of autism.
"If my son couldn't hear and needed a cochlear implant, we wouldn't be asking the school system to take responsibility," said Jack's mother, Judith, coordinator of the New England lobbying effort for Autism Speaks. "As a society, we have to acknowledge that autism crosses a line from an educational issue to a medical one. Jack was diagnosed by a neurologist, not a schoolteacher."
Richard DeRoo of Reading, a software engineer whose 11-year-old son, Evan, has autism, said parents are desperate for more financial help.
Since his diagnosis at age 3, Evan has needed extensive behavior, speech, physical, and occupational therapy, his father said. The family paid for some of that care out-of pocket at a cost of $25 to $50 per hour.
