N.J. bill would require autism-treatment coverage

TRENTON - After testimony from parents who had depleted their savings to provide treatment for their autistic children, New Jersey Senate and Assembly committees yesterday advanced a bill that would require insurers to cover screening and therapies related to the disorder.

"If my child had cancer, diabetes or fetal alcohol syndrome, she would be covered," testified a tearful Hilary Downing of Readington, Hunterdon County. "The college savings of my older daughter is gone."

Autism is a developmental disorder characterized by repetitive movement and severe deficits in communication and social interaction. Researchers have found New Jersey to have a high prevalence of autism, for which there is no known cure.

"I don't know of any parent who wouldn't do everything in their power to give their autistic or developmentally disabled child every chance to excel," said Sen. Loretta Weinberg (D., Bergen), a bill sponsor. "However, the enormous cost of behavior intervention . . . makes it out of the realm of possibility for many families."

The Assembly may vote as early as Thursday. The Senate bill has moved to the Appropriations Committee.

Ten states, including Pennsylvania, have enacted legislation requiring coverage of autism treatment. Most of the laws cap benefits and the age of those covered.

Similar to Pennsylvania's law, which goes into effect July 1, New Jersey's bill would provide developmentally disabled patients under 21 with insurance benefits of up to $36,000 a year for diagnostic services and behavioral early intervention, as well as occupational, physical, and speech therapy.

"In this economy, every New Jersey resident is struggling, but families with kids with special needs are struggling even more," said Assembly Speaker Joseph Roberts Jr. (D., Camden), who also sponsored the bill. "They're maxing out their credit cards and taking out second mortgages" to cover gaps in insurance.

Holly Masclans broke into tears as she testified that she had mortgaged her Haddonfield home three times and drained her older daughter's college fund to obtain $750,000 in behavioral and other therapies for two children with autism. "The only thing left that hasn't been treated is their stuttering, but we're broke," she said.

Roberts called expanding insurance coverage the "most significant piece of unfinished business" after passage of seven autism bills since 2007. New Jersey has improved early detection, increased research funding, studied needs of adults with autism, and created training programs for teachers and first responders.

The Legislature acted after the Centers for Disease Control and Prevention reported in 2007 that New Jersey had the highest autism rate among 14 states it was studying. Researchers found autism symptoms in one in 94 New Jersey children, compared with 1 in 150 in the other states, including Pennsylvania. Roberts and other witnesses yesterday attributed the state's rate, in part, to better diagnosis.

U.S. Sens. Robert Menendez (D., N.J.) and Bob Casey (D., Pa.) and Rep. Chris Smith (R., N.J.) are sponsoring federal legislation to expand autism insurance coverage.

No member of either New Jersey state committee objected to the measure. Two Assembly members abstained.

The New Jersey Business and Industry Association and New Jersey Association of Health Plans opposed the bill because of cost concerns.

As employers' insurance plans become more expensive, workers lose coverage, Christine Stearns, the business association's vice president for health and legal affairs, said in an interview. "How, who, and what is part of a basic health plan is all part of that," she said.

Stearns said that the bill was an improvement to previous versions because it required services to be medically necessary and prescribed; included a reasonable price cap; and ensured that the cost of educational services provided by schools would not be not shifted to insurers.

Roberts said improved coverage would enable earlier treatment and prevent costlier problems later. He referenced a University of California, Los Angeles, study that showed that 47 percent of autistic children who received early behavioral treatment went on to be "indistinguishable from their peers" and started elementary school in mainstream classes.

The annual cost difference between special education and regular-classroom instruction in New Jersey is nearly $37,000, he said. In the long term, he said, the state also would save on adult and institutional care.

The lifetime cost of caring for a person with autism is about $3.2 million, Harvard psychologist Michael Ganz estimated in 2006. In his study, the first to document the societal price of autism, Ganz suspected that parents' out-of-pocket expenses were underestimated.

Lisa Bilsky of Princeton said she spends hours on the telephone arguing about coverage for her 10-year-old son. Last week, she said, a claim was denied for a developmental pediatric visit. Even for benefits her insurance provides - such as occupational therapy - her son must frequently be recertified as needing treatment.

Autism is "not like you sprained your ankle. It's not going away," she said.