The bills for treating 6-year-old Brody Christiansen’s heart defect would have left almost any family bust.
Four open-heart surgeries. Six heart catheterizations. Six different medicines. Hundreds of doctor appointments.
Insurance covered those treatments for a condition restricting the ability of Brody’s heart to pump blood.
But the Christiansens weren’t so fortunate when Brody was diagnosed last summer with autism.
Insurance wouldn’t cover the treatments needed for Brody to overcome the developmental brain disorder that’s often a barrier to communication and social interaction.
“It was such a shock they weren’t going to pay for this,” said Brody’s mom, Hollie. “We had all the support we needed for medical, but we weren’t getting any support for the behavioral issues really affecting the quality of his life.”
Advocates for children with autism are trying to change that in Kansas this year with legislation mandating coverage.
The insurance industry has fought back against a sweeping mandate. It has teamed with key lawmakers on a measure that would cover some children but not others.
Similar efforts suffered repeated setbacks in recent years. The bill introduced this year looks more likely to succeed. But it falls short of what some advocates for children with autism wanted.
Kansas is among 17 states that don’t broadly mandate private insurance coverage for autism, even though it is required for the state employee health plan. Missouri has mandated autism coverage for insurers since 2011.
Autism can be expensive to treat, sometimes costing families $40,000 to $60,000 a year.
Insurers have been reluctant to cover some autism therapies, contending the treatments fall into a gray area between what can be treated medically and what can be dealt with in a classroom.
At the core of the debate is applied behavior analysis, an intensive therapy that tries to improve language and social skills with positive reinforcement.
For instance, a therapist might give a child a reward — a hug, a food treat or watching a favorite video — for making eye contact, forming words or quietly sitting at a table.
Parents and doctors believe that form of therapy is critical for treating autism, but insurers have argued the treatment was more educational than medical.
Now with support from House Speaker Ray Merrick, hopes ran high that the Legislature would mandate insurance coverage for children with autism, including the expensive applied behavior analysis therapy.
But a proposal emerged last week to expand coverage less broadly.
“Something may get passed,” said Mike Wasmer, a national advocate with the group Autism Speaks. “Whether or not it’s meaningful coverage for children with autism remains to be seen.”
Lawmakers, led by Republican state Rep. John Rubin of Shawnee, have negotiated a deal with insurers that would extend autism coverage to about 250 children under 18 starting in 2015.
Rubin’s agreement was introduced as a bill last week. Hearings on the measure are scheduled for this week.
The bill is much narrower than what advocates for the autistic have pushed.
• Rubin’s plan would provide yearly coverage for 520 hours of applied behavior analysis, or 10 hours a week. Advocates for children with autism pushed for more than 2,000 hours a year, or 40 hours a week.
Wasmer said 20 to 25 hours of treatment each week is generally considered a minimum with 40 hours prescribed in more severe cases.
• Rubin’s plan requires anyone who provides applied behavior analysis to be licensed by the state starting in 2016.
The insurance industry says it wants licensing to ensure quality care. But advocates for autistic children worry that establishing a licensing system might delay coverage and access to service. Missouri licenses the same type of therapists. Just 28 of Missouri’s 115 counties had licensed therapists as of Jan. 21.
• Rubin’s proposal applies initially to employers with more than 50 employees with health plans in place before the federal Affordable Care Act was enacted in 2010. The measure would extend to health plans for individuals and small employers in 2016, adding coverage for an estimated 500 more children.
Rubin said it was politically impossible to cover every child with autism — estimated at 8,400 in Kansas — because the federal Affordable Care Act requires the state to pay for any new mandate added to health plans sold under the law.
“It would have cost many millions, which means the bill would never pass,” Rubin said.
Rubin concedes his bill won’t cover as many children as he wanted. He said the bill needed support from the insurance industry or it would die.
“I want something,” Rubin said. “If I can help 250 kids next year as opposed to helping no kids next year, that’s what I’m going to do.”
Wasmer said he was disappointed that the insurance lobby held so much sway over the fate of the bill.
“What does that say about politics of the people — that an insurance lobby is the one that dictates which bill has a chance of getting a hearing,” he said.
The insurance industry said it has negotiated in good faith to reach a deal guaranteeing some level of autism coverage.
Mary Beth Chambers, spokeswoman for Blue Cross and Blue Shield of Kansas, said the industry compromised by not fighting all insurance mandates to treat autism.
She pointed out that the industry agreed to extend coverage to applied behavior analysis therapy and increase the age eligibility for coverage.
“We have crafted a bill that gives both sides some wins,” Chambers said.
The bill faces opposition from state Rep. Scott Schwab, an Olathe Republican who chairs the House Insurance Committee.
Schwab said he opposes adding mandates that might drive up insurance prices by requiring coverages that many consumers might never use.
He said requiring one form of specialized insurance would lead to other requests.
“Who’s the next group,” he asked, “to come and ask for a mandate?”
In Missouri, the mandate covered 3,070 people with autism last year. The autism-related claims totaled $8.3 million, less than 1 percent of $4.2 billion in all claims.
Missouri officials believe the costs are so small that the mandate is not likely to have an appreciable effect on premiums.
Merrick, the Kansas House speaker, was criticized for not moving autism bills last year. Critics said he intentionally bottled up the process.
“A lot of people in the outside world think I’ve been sandbagging this thing, but I haven’t,” Merrick said. “The process is working.”
Merrick said he has tried to bring both sides together to work out a compromise. Regardless of what passes, he said, the autism community will not be content with the bill.
“What do they got right now? They got nothing,” Merrick said. “They’re going to get something.”