The Hawaii Legislature is poised to start requiring health insurers to provide medical coverage for children with autism.
Currently, Hawaii doesn’t require health insurance providers to help with the costs of therapy and treatment for people who suffer from autism.
The measure, Senate Bill 2054, also known as “Luke’s Law,” would make Hawaii the 35th state to enact such a reform. Nine others are considering similar legislation.
After several years of pushing the bill in Hawaii’s Legislature, advocates say they’re encouraged that the newest iteration of “Luke’s Law” is steadily advancing this session; it passed through the House consumer protection committee late last week and it will soon head to the finance committee.
The law is named after an autistic boy from the Big Island whose family’s long-drawn-out struggles to afford suitable health care and get him proper treatment at school has made him into a poster boy for the thousand or so children in Hawaii who are estimated to suffer from autism spectrum disorder.
Autism, which can be extremely expensive to treat, denotes a group of complex brain development disorders ranging from Asperger’s syndrome to childhood disintegrative disorder in which children stop developing normally around the age of two.
Sen. Suzanne Chun Oakland, who helped to introduce the bill, emphasized the importance of the measure to alleviate the costs and emotional burdens of what has become an epidemic.
“I understand that there are ways and services to mitigate autism … to help children to be able to learn and function well, as long as they have the different types of treatments available to them,” she said.
Parents pay as much as $60,000 annually for medical treatment, often dipping into their savings, with some ending up in bankruptcy, according to the advocacy group Hawaii Families for Insurance Fairness.
Some parents say the annual cost can easily surpass six figures. Nyle Dolera, for example, said he paid $250,000 out of pocket annually for professional services and other treatment during the last two years of his daughter’s life — about $500,000 total.
His 9-year-old daughter, who was severely autistic and grew up unable to talk and walk on her own, died in an accidental drowning late last year, according to Dolera, a recent widower who’s still grieving about the losses. But he has decided to work to improve the situation for other autistic children and their families in honor of his late daughter.
He said he was able to use his wife’s life insurance — she died in 2011 — to pay for the costs of his daughter’s treatment.
Dolera stresses that the money allowed him to pay for truly effective care. And, for the last months of Hannah’s life, it was, he says. Her treatment, which included nearly daily meetings with a cognitive behavior specialist and therapeutic horseback riding designed to teach motor and speech skills, started to allow her to lead a more satisfying life. Toward the end, Hannah was walking on her own and learning to interact with others; she no longer needed to be strapped to a chair to control her movements so she wouldn’t hurt herself or others.
The various treatments were “like having a nurse staying with you at home all the time,” her father said.
Still, most families can’t even begin to afford services like that. Advocates say “Luke’s Law,” which could go into effect next December, is integral to making quality, well-researched treatment accessible to all autistic children under age 18. The coverage would include screening and diagnoses, too.
“No child with autism in the State of Hawaii should be denied proper treatment because of its cost,” said Lorri Unumb, who directs state government affairs for the national advocacy group Autism Speaks, in a statement. “Children with autism should have the opportunity to reach their full potential, and this bill unlocks the door to life-changing treatment.”
The Autism Epidemic
The U.S. Centers for Disease Control and Prevention estimate that autism affects one in 88 children nationwide, including one in 54 boys. And it’s becoming more and more prevalent; the CDC is expected to report later this week that the rate has grown to an even greater percentage, according to experts familiar with autism research. Even though increased awareness has contributed to the spike, experts say the disorder’s prevalence is growing far faster.
Very little is known about what causes autism aside from emerging evidence showing links to “environmental stresses” and other factors. But researchers and medical professionals have been able to firm up ideas about the “best practices” in treatment, particularly in the realm of behavioral health treatment.
The services that would be covered under “Luke’s Law” are specific and include psychiatric and therapeutic care.
Under the law, insurers would be required to cover up to $50,000 annually and up to $300,000 during a child’s lifetime. The bill also includes an appropriation from the state for an as-yet undetermined amount — one detail that Chun Oakland noted could generate obstacles once the finance committee hears it.
Research out of the University of California at Los Angeles suggests that positive-reinforcement therapy known as “Applied Behavior Analysis” can help some autistic children become “mainstream” — indistinguishable from his or her non-autistic peers — according to Mihoko Ito, an attorney who has followed the legislation closely for three years.
Other forms of treatment that would be covered include speech therapy and long-term counseling.
The Money Question
Advocates say the law would save both the state and families hundreds of thousands of dollars.
Data from other states that do mandate autism coverage suggests that the premiums would cost very little for the insured — just 31 cents per month, according to Hawaii Families for Insurance Fairness.
Rep. Della Au Belatti also stressed how much money “Luke’s Law” would save, but for state agencies — in particular, the Department of Health, which is in charge of providing services for adults with autism, and the Department of Education, which covers children in school.
In fact, Belatti speculated that one reason “Luke’s Law” has gained so much momentum this year is that various state agencies are beginning to realize how much of a financial burden autism services are becoming for them.
The Department of Health, for example, spends at least $200,000 — and as much as $900,000 — for each of the roughly 300 autistic adults it serves, according to Ito.
The Hawaii Department of Education, on the other hand, spent nearly $37.5 million on autism programs for students during the 2012-13 year, according to DOE data provided to Belatti.
Opponents
But not everyone’s rooting for the bill, namely medical insurance providers and the state Chamber of Commerce. Such organizations believe they would end up directly or indirectly footing the bill.
The Chamber of Commerce points to a 2009 state auditor’s report showing the law could cost providers $100 million per year.
“Health care premiums are already a substantial and growing cost for businesses with the large portion of premiums being paid for by employers,” said spokeswoman Lori Abe, who also pointed to a provision in the bill that exempts the state from paying for new benefits under the Affordable Care Act. “We believe that a statewide solution, addressed and funded through a mix of state and community dollars, is a better and more equitable approach than having businesses, alone, paying for this new mandate.”
Abe also stressed that professional state licenses for autism-treatment specialists don’t yet exist, a void that could pose consumer protection issues.
Meanwhile, Kalma Wong, whose teenage son is autistic, worries that the age cap at 18 excludes older people who need autism therapy.
The bill in its current version covers all children under age 18, though the age cap has undergone several changes over the course of the session. At one point, the coverage would’ve been capped at age six — a provision that Ito said would have made it an “ineffective bill.” The average age of diagnosis is four.
Wong also worries that the bill is too specific about types of treatments covered, noting that she uses her own intervention and support strategies with her son and the result is often better than anything else.
And, Wong added, lawmakers opted not to conduct a “sunrise review” this year of the measure — an assessment of whether the proposed regulations meet existing requirements and are fit to become law — which could pose problems further down the line.
Chun Oakland said lawmakers decided not to get the review this year because a similar study was already conducted for the first version of “Luke’s Law,” and seeking another review might end up stalling the legislation.
