A 2009 state mandate requiring insurance companies to pay for a highly regarded therapy for children with autism hasn’t eliminated struggles for families seeking the treatment.
The law required insurance coverage of therapy based on applied behavior analysis, a technique that involves intensive interventions to modify behavior.
Family members and advocates for children with autism said there are several reasons why children have been unable to receive the expensive therapy, including difficulties finding providers, a lack of widely accepted medical billing codes and struggles with insurers.
Several parents said at a March 7 hearing of the Assembly Financial Institutions and Insurance Committee that they have battled insurance companies that said some of the care must be provided by school districts, The parents also cited instances in which insurers denied claims for treatment that doctors said was necessary.
Meredith Blitz-Goldstein said she hired a medical billing expert and a lawyer to navigate the hurdles to receiving coverage for her 8-year-old son. She said applied behavior analysis-based therapy has helped with his autism, which is a developmental disorder that affects social and communication skills.
Gina Pastino, another parent of a child with autism, said her family has struggled through years of frustration seeking approvals of insurance coverage.
“I’m going to lose my mind if I have to keep doing this,” Pastino said.
Pastino was among parents who said that school-based applied behavior analysis therapy has not equaled private services.
Another challenge is the lack of a billing code accepted by insurance companies. Autism advocates said work is being done at the national level to establish such a code.
There are other issues affecting the number of children protected by the 2009 state law, according to Neil Sullivan, who oversees regulation of health insurance as assistant commissioner of the Department of Banking and Insurance.
The primary issue is that the 2009 law pertained only to health plans purchased by businesses and individuals through the commercial market, which covers roughly 30 percent of the population. It doesn’t apply to government-funded insurance plans or to people who get coverage through employers that self-insure.
Assemblyman Gary Schaer (D-Bergen and Passaic), the committee chairman, expressed frustration that families are still facing these challenges more than three years after the law was enacted.
He said insurers and state regulators must meet with families to resolve the problems, adding that the committee would reconvene in six months. If the problems haven’t been solved at that time, legislation will be introduced to resolve the issues, he said.
Wardell Sanders, president the New Jersey Association of Health Plans, an industry trade group, said he believes insurance companies are complying with the 2009 law.
He said there may be instances in which therapy is deemed medically necessary, but there is a legal limit on the number of visits with a therapist that insurance companies are required to cover.
Suzanne Buchanan, interim executive director of advocacy group Autism New Jersey, said therapists and insurers haven’t communicated successfully about the problems.
Applied behavior analysis therapy “doesn’t fit into their neat boxes,” Buchanan said of insurers. She added that school districts and insurers have each tried to shift the responsibility – and the expense – of treatment to each other.