For Gerilyn Pinnow, every dollar that goes to treat her son’s autism is one less she’s able to save for her daughter’s college education.
That choice is one reason Pinnow and other parents are pushing the Hawaii Legislature to pass a bill that would require insurance companies to cover treatments for autism, a move opposed by some insurers, who say it could lead to higher costs for people seeking coverage.
The bill is named after Pinnow’s 12-year-old son, Luke, who was diagnosed with autism at the Mayo Clinic in Minnesota.
Traveling to get Luke diagnosed cost the family about $10,000, she said. Pinnow, a teacher who lives in Ewa Beach, said she had to tap into her retirement and short-sell her family’s house to cover treatment costs.
“No other family should have to go through that,” she said in an interview Monday.
Hawaii lawmakers continue to work out the details of Senate Bill 2054, which is being debated this week in a committee that would require insurance companies to cover applied behavioral analysis and other treatment options. Applied behavioral analysis is widely viewed as the most effective treatment for autism spectrum disorders.
But the Hawaii Medical Services Association, one of the state’s largest insurance companies, opposed the bill, saying it would be too expensive to provide the services.
Jennifer Diesman, vice president of government relations for the company, said in written testimony that a previous audit estimated it would cost $1 billion for Hawaii companies to provide treatment. Instead, Hawaii Medical Services Association asked for a cost study and informed the Legislature that its insurance plans would have to undergo a price adjustment if the bill passed.
“The Legislature should not adopt legislation mandating this coverage until it fully understands its financial impact,” Diesman said. She declined to comment further.
Kaiser Permanente Hawaii also expressed concerns about the bill to lawmakers.
Nationwide, one in 68 children has been diagnosed with an autism spectrum disorder, according to the Centers for Disease Control and Prevention. Hawaii is behind 36 states that already have mandated health care coverage for autism treatments, said Heather O’Shea, executive clinical director for ACES, a San Diego-based autism treatment provider that has offices in Hawaii.
“This impacts everyone,” O’Shea said. “This is your cousin, your nephew, your sister. It’s everywhere. And these individuals have a right to have a full, fulfilling life.”
Lawmakers in the House and Senate have passed different versions of the bill. They are now debating an age limit for children who would receive mandated treatment and an annual or lifetime cap. The age limits that have been considered ranged from 8 to 18 years, and the cost caps ranged from $50,000 per year to $300,000 for a lifetime, said Sen. Josh Green, co-chairman of the bill’s conference committee.
In a conference committee hearing Monday, Rep. Della Au Bellati said House members are drafting a new proposal to present to Senate members Tuesday.
“There are real strong concerns about cost, so that’s what we want to pay attention to,” Bellati said in an interview. “We’re looking for a way to responsibly share the cost throughout the community.”
Schools in Hawaii provide some level of treatment for autism disorders, and Pinnow has taken advantage of those treatments for her son. But applied behavioral analysis wasn’t offered, she said.
Green said he is in lockstep with Bellati. After passing out of its current conference committee, which includes health committee members, the bill also would have to be approved by each chamber’s finance committees.
“It’s a moral imperative that we do this,” Green said. “The bill will not get held up by us quibbling around small details. I want children with autism to be covered.”