After years of trying, advocates for children with autism are hopeful that the Legislature will pass a bill requiring medical insurance companies to provide coverage for diagnosis and treatment.
Hawaii is one of only 12 states that do not require health insurance coverage for children with autism, said Lorri Shealy Unumb, vice president of state government affairs for the national advocacy group Autism Speaks.
"I think the states are realizing that this is a fiscal and moral imperative," Unumb, the mother of an autistic child, said at a joint hearing of the Senate Health and Commerce and Consumer Protection committees Friday.
The two committees moved out Senate Bill 791, which requires health insurers, mutual benefit societies and health maintenance organizations to provide coverage for autism diagnosis and treatment for children until age 11 and a total lifetime maximum benefit of about $220,000.
Senate Health Chairman Josh Green (D, Naalehu-Kailua-Kona), who introduced the bill, said parties from the health insurance industry and the advocacy groups worked with him to reach a compromise after a similar measure died in the closing days of the 2014 Legislature.
"I really believe that this is the year that it’s going to pass," he said after Friday’s hearing.
"I know both sides feel it’s not perfect, but I think it is the right start," Green said. "And it’s affordable, but not cheap. It will provide extra care to thousands of children with autism and that’s a place to start."
Green said another game changer this session is that a new auditor’s report estimates the total annual cost to the Hawaii medical insurance industry at approximately $20 million, revised from $1 billion.
The actuarial analysis completed last year estimated that mandating coverage for so-called autism spectrum disorder would cost between $17 to $31 per member per year, or $1.44 to $2.56 per member per month, according to written testimony submitted by the Hawaii Medical Service Association.
Meanwhile, federal Medicaid policy now is to provide autism coverage for youths for about one-quarter of the state’s population, he said.
Autism Now’s Unumb said it makes sense that children with private health insurance should receive the same benefits as those receiving Medicaid. She noted that those Medicaid benefits are provided to people with autism spectrum disorder until they are 21.
The term "spectrum" refers to the wide range of symptoms, skills and levels of impairment or disability that children with the condition can have. Asperger’s syndrome, for instance, is included in the broader spectrum.
Jennifer Diesman, HMSA vice president for government relations, testified that the state’s leading health provider has had a long-standing policy of opposing mandated benefits coverage.
"We believe that our employer customers and union customers should be able to have a choice in choosing … plans."
However, Diesman said, "we do believe that this version of the measure addresses many of the concerns we’ve had over the years and we do believe that it allows the health plan to have the ability to manage the services and to ensure that the services are appropriate."
Diesman also agreed with Green that the most recent auditor’s study showed "more reasonable dollar amounts." As a result, she said, "the premium rates will not increase as significantly as previously thought."
Phyllis Dendle, director of government relations for Kaiser Permanente, said her group supports the bill. Like Diesman, Dendle said many of the concerns she had raised previously have been addressed.
Pono Chong, a representative for the Chamber of Commerce of Hawaii, expressed concerns about the bill regarding the vast difference in projected costs in the two studies as well as whether a 2016 implementation date would give businesses enough time to prepare for the change.
The bill also should not affect businesses with fewer than 50 employees, he said.
The concerns raised, however, were overshadowed by the at times heart-wrenching testimony of advocates, parents of autistic children and several autistic children.
Luke Pinnow, 14, urged lawmakers to help him and his family.
"My brain does not work too good," he said.
Gerilyn Pinnow, Luke’s mother, said her son continues to need help and would not benefit under a bill that provides benefits for children with autism only until they are 11.
"He needs the services to understand how to navigate socially and become a functional adult," she said.
She added that such services are not provided by the Department of Education.
"He needs people who are trained in helping him," she said.
Several parents spoke of the high cost of providing care for their children with autism.
Scott Spallina said that even on his government attorney’s salary, he still needs to ask for help from relatives on the mainland to help pay for the cost of providing care for his autistic daughter. Some services are available, but they are not nearly enough to help his child’s needs, he said.
He and his wife have a second child who is not autistic.
"We just see all the funds drained from any activity that we give to our other child diverted to our autistic child," he said.
Amanda Kelly, president of the Hawaii Association for Behavior Analysis, said one in 68 children in the United States is affected by autism spectrum disorders.
Several advocates noted that experts predict a "tsunami"-like increase in the number of children affected by autism.
With both committees voting to approve the bill, the measure now goes to the Senate Ways and Means Committee.
The only "no" vote Friday came from Sen. Sam Slom (R, Diamond Head-Kahala-Hawaii Kai), who said while he supports autism research, he philosophically is opposed to any legislation that mandates what medical insurance should cover.
After the hearing, both Unumb and Kelly said they think a bill mandating autism coverage will pass this session.
"Just sitting in the hearing today … we heard much stronger support and less opposition than we ever heard," Kelly said. "I think this is the year that we finally get something passed and then we’ll keep fighting to make sure it’s meaningful and cover as many families as possible."
