View full sizeMeredith Blitz-Goldstein, of Verona, and her 7-year-old son, Matthew, who is diagnosed with a mild form of autism. The family spent their savings and mortgaged the house to pay for years of behavioral therapy for Matthew after he was diagnosed with a form of autism as a toddler. And then they shelled out thousands in legal fees in a 3½-year battle to convince the state health benefits plan and insurer Horizon Blue Cross Blue Shield of New Jersey to cover it. TRENTON — When the state Supreme Court five years ago ordered New Jersey and its insurer to pay for intensive therapy for a 5-year-old boy with autism, other families thought their days of piling up debt to get their kids treatment were over.
It didn’t work out that way for Ken and Meredith Blitz-Goldstein of Verona.
The family spent their savings and mortgaged the house to pay for years of behavioral therapy for their son Matthew, 7, after he was diagnosed with a form of autism as a toddler. And then they shelled out thousands in legal fees in a 3½-year battle to convince the state health benefits plan and insurer Horizon Blue Cross Blue Shield of New Jersey to cover it.
The fight ended last month when the insurer mailed a check for $97,088.45. But the couple says the experience shows how hard it is to get coverage for children with autism and other developmental disabilities — despite the court ruling and a 2010 law mandating it for all state-run and state-licensed insurers.
"The problem with insurance companies is they make it so challenging to file claims," said Meredith Blitz-Goldstein, an oral surgeon who works for the state-run New Jersey Dental School. "A lot of parents don’t know how to get through the system, and I think that’s how Horizon likes it."
New Jersey has the second-highest autism rate in the nation, with one in 49 children diagnosed with the neurological disorder that impairs a child’s ability to communicate, learn, and form social relationships, according to the most recent surveys. The number of New Jersey public school children with an autism diagnosis tripled from 2002 to 2011.
Advocates say insurance companies and employers historically have balked at covering behavioral therapy because at one time it was considered experimental — and more of an educational exercise than a medical treatment. And, they say, it’s expensive because it takes a large investment of a skilled therapist’s time.
Families frequently report living on credit cards and going broke to pay for the care. Meredith Blitz-Goldstein said the therapy taught their son "everything — how to talk, use the toilet, communicate with family and friends, socialize."
Horizon spokesman Thomas Vincz deferred comment on the family’s case and the issue in general to the state Health Benefits Commission. Horizon merely paid the tab for the family "in its role as the administrator" for the state plan, he said.
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Since 2007, Horizon has paid $31.8 million in 211,000 claims by non-state workers for autism-related therapies, Vincz said. This does not include money paid to the Blitz-Goldstein family and others covered under the state health benefits plan, he said.
Since the state enacted the mandate, Horizon estimates the cost has driven up premiums "less that one-half of 1 percent."
Treasury spokesman Bill Quinn said state administrators fought the family’s claims because they did not think the Supreme Court decision applied to others, and was not clear that behavioral treatment was clearly mandated by the courts.
Jodi Bouer of Kingston, the family’s attorney, said the state reversed course just as she was planning to take it to court.
"It’s a great win, but the system doesn’t really work because most people can’t afford to hire a lawyer," she said. Insurance companies "are just hoping people go away."
The family’s claims came before the 2010 state law mandated coverage. But advocates say families still have trouble getting coverage in spite of the mandates.
The law — and the state Supreme Court order — applies only to teachers and other workers covered by the state health plans, or people in the private sector covered by a state-regulated insurance plan such as Horizon. Insurance regulators estimate only 30 percent of the state’s insured population falls into this category, said Elena Graziosi, spokeswoman for Autism New Jersey.
The group fields many calls from families looking for advice on how to figure out whether they are entitled to coverage under the state law, Graziosi said. "We suggest people consult someone with legal expertise," she said.
The state health benefits program and the School Employees Health Benefits Program have paid out nearly $40 million in claims since the law mandating coverage took effect in February 2010, Quinn said.
Bouer said the cost is worth it. "There is going to be a much higher cost to society if we don’t help them now," she said.
She added that even those covered by the law have trouble with insurers, saying there should be a state advocate who could help compel insurers to cover and reimburse the benefits required under the mandate.
The family of Jake Micheletti, the boy whose case prompted the 2007 Supreme Court decision, said they continue to have clashes over coverage.
"Unfortunately, the state Health Benefits Commission has chosen not to follow the Micheletti decision," said the boy’s mother, Elizabeth. "They just recently denied our son, Jake, speech therapy that was ordered by the Supreme Court."
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