As a mom with autistic children, Bea Judah has the misfortune of living in Kansas.
Treating autism is pricey, maybe as much as $40,000 to $60,000 a year. But living in Kansas means the Judahs, like thousands of others, are on their own.
Parents with health insurance are learning that coverage is not always available or adequate for treating autism, a developmental brain disorder that affects a person’s ability to communicate and interact with others.
Judah was one of those parents. After their oldest daughter, Claire, was diagnosed with autism at 3 years old, the Judahs were given a list of places where she could get treatment.
The catch: None of the treatments were covered by insurance.
“What were we supposed to do?” Judah asked. “We couldn’t afford any of that.”
The Judahs are at the center of a debate that’s unfolding in Kansas and across the country as more states pass laws requiring insurance coverage for autism treatment.
Kansas is among 17 states that don’t broadly mandate autism treatment coverage, although Kansas did agree to a test program in 2010. Missouri passed a law requiring autism coverage in 2010.
The Legislature has tried unsuccessfully in recent years to require autism coverage. Some legislators think it has a better chance next year.
Insurance coverage is out there, depending on the employer and insurance carrier. But Kansas parents find there are coverage gaps that leave them scraping for dollars.
Parents say ensuring a normal life for their kids means maxing out credit cards, burning through retirement savings, seeking help from family and friends, or even, in some cases, declaring personal bankruptcy.
“We have had so much financial struggle keeping our heads afloat,” Judah said. “You have to make decisions about whether you’re going to pay for your kid’s medicine or school supplies.”
The Judahs estimate they have spent $20,000 on autism treatment for Claire and their youngest son, who also is autistic, but they have foregone some medicines and therapies because of cost.
The insurance industry, meanwhile, says new mandates increase insurance premiums to cover therapies that don’t fall within the typical scope of health insurance.
“Do we want comprehensive coverage for everything? We do, but we have to recognize that ends up driving costs higher,” said Kevin Wrege, spokesman for the Council for Affordable Health Insurance, an advocacy group for insurance carriers nationwide.
In Kansas, insurance companies have been urging lawmakers to ease up on any new mandates until it’s clear how the new Affordable Care Act will affect premiums.
“It’s not the best time to be looking at new requirements for health insurers,” said Mary Beth Chambers, spokeswoman for Blue Cross and Blue Shield of Kansas.
But some Kansas lawmakers, including conservatives who generally oppose government mandates, want to push forward.
They argue the state will save money in the long term by treating kids now and getting them on their way to an independent life.
“It is the fiscally and morally conservative and responsible thing to do for Kansas kids with autism and their families,” said Rep. John Rubin, a Shawnee Republican.
However, Kansas insurance regulators have warned lawmakers that the state might have to pick up the cost of any new mandate that would be a part of basic insurance plans sold under the Affordable Care Act.
As the number of children with autism escalates nationwide, states are enacting laws to require coverage for therapies that insurance companies believe to be educational or experimental. The Centers for Disease Control and Prevention recently estimated that one in 50 children has autism, up from one in 205 a decade ago.
Meanwhile, 33 states require autism coverage. At least 17 of the laws — including Missouri’s — have passed since 2010.
Three years ago, advocates for autistic children made progress in Kansas when legislators approved a pilot program requiring the state employee health insurance plan to cover autism therapies.
While that program will become permanent, the state hasn’t extended required coverage to private insurers and an estimated 1,100 more children with autism.
The Legislature failed to pass a bill in 2012 when it fell a couple of votes short in the Senate. And this year, a bill didn’t get a hearing, although hopes for passage were high after key opponents were voted out of office.
“The gamesmanship has really been disheartening, to say the least, for parents who are essentially going bankrupt trying to pay for this out of pocket,” said Mike Wasmer, a national advocate with the group Autism Speaks.
Lawmakers who support the mandate expect the issue to return next year and they are hopeful that a bill can get passed.
House Speaker Ray Merrick, who was accused of bottling up the autism bill this year, has vowed to push a bill through himself next session if the insurance industry won’t compromise on the issue.
The debate over autism coverage has centered on whether many therapies are medical or educational.
Insurers argue there is no clear standard of care to determine what therapies autistic children need since the disorder varies from person to person.
“We’ve got a lot of these behavioral therapies that are in a zone between medical and educational,” Wrege said. “It’s not as clear a medical issue as, say, treatment for a purely physical ailment would be.”
Parents don’t see it that way. They think the insurance companies are trying to dump the cost of autism treatment onto the public school system.
“It is a neurological disability. It is diagnosed by a doctor. It is not diagnosed by a special education teacher,” said Jennifer Smith, president of the Autism Society of the Heartland.
One of the key disputes about insurance coverage centers on a treatment known as Applied Behavior Analysis, an intensive therapy that works to improve language and social skills by rewarding appropriate behavior. Complicated tasks, such as playing with other children on a playground, are broken down into smaller, manageable tasks.
Sometimes running as much as 40 hours a week, this type of treatment can cost a family more than $60,000 a year.
Parents and doctors believe the therapy is critical for treating autism, but it’s commonly not covered by insurance companies because it is considered experimental.
Blue Cross and Blue Shield of Kansas provides coverage for speech and occupational therapy but does not cover Applied Behavior Analysis, a spokeswoman said. The therapy, she said, goes beyond what would be considered traditional medical coverage.
Supporters of autism insurance reform point to Missouri as an example to rebut arguments that a mandate will increase health insurance premiums.
After years of debate, Missouri enacted a law in 2010 that required health insurers to cover autism therapies and treatments.
A state insurance department report showed that claims for autism treatment totaled $6.5 million in 2012 out of nearly $4 billion in overall claims. The report concluded that any increase in Missouri insurance premiums resulting from the mandate would likely be just a fraction of 1 percent.
In Kansas during 2012, the state employee health plan cost the state about $309,000 for autism treatment for 126 people out of about $343 million in total claims paid. Projections show that autism expenses under the state plan could grow to $496,000 by 2015.
“We’re not giving up on our children,” said Smith of the Heartland autism society. “We will fight to the death — and go broke at the same time — to try to get the services our children deserve.”