Two Arizona parents are taking on one of the biggest private employers in the state in a federal class-action lawsuit to force the company to cover vital therapy for their 5-year-old autistic son.
The case, filed earlier this month in U.S. District Court in Tucson, says as much about the state of health care as it does about any possible gaps in the law or a disorder that now afflicts one in 68 children in the U.S. And all the more so because the employer being sued is Banner Health, a major player in the health care system and an institution that is supposed to treat people who need it.
None of that concerned Micah and Laura Etter at first. They reacted like many young parents to the news their toddler son showed signs of autism. Disbelief, denial, and shock gave way to determination to get help for the boy, who they asked not to name. They fear he may be embarrassed and stigmatized for life.
“He was a normal, typical baby boy,” Laura Etter recalled.
Then, around the age of 2, he changed. She describes it like a light being switched off.
Instead of pointing to body parts or making animal noises when asked, he just stopped. Stopped responding. Stopped talking. Stopped looking at people. He played with his radio, obsessively flicking the power on and off over and over.
“You’d look at him and think he just was not in there anymore,” Laura Etter said.
Micah Etter saw the first indications that something was wrong. He was taking a pediatrics class in medical school, and about the same time, the class was reviewing symptoms of Autistic Spectrum Disorder. He recognized the signs.
Questions turned to concerns, which turned into consultations. Experts said something was wrong. Their son's speech was a year behind. He’d bite the dog and bang his head into the carpet. Assessments became diagnosis. Their son had autism.
Not that long ago, such a pronouncement would hit a family like a death knell. Their son will never have a normal life, they would think.
But in recent years, the science and understanding of autism has advanced. In 1987, researchers at UCLA demonstrated that a battery of assessments and behavior modification therapies, uniquely tailored to each child, showed proven success. They read and interacted better after the therapy, and the results were significant and demonstrable. The therapy is called Applied Behavioral Analysis, or ABA.
Since then, results were replicated, and a string of medical organizations and leaders, including in 1999 the U.S. Surgeon General, endorsed ABA. The treatment became a mainstay of therapy at pioneering places such as the Southwest Autism Research and Resource Center, or SARRC.
Autism reached epidemic levels. Since 2000, the prevalence nationally has spiked from one in 500 to one in 68 people.
SARRC and Autism Speaks pushed for more coverage, and the law slowly matched the science. In 2008, Arizona became the fourth state to require insurance cover ABA. Today, 46 states have a similar law.
In the first year after the new law took effect in Arizona, the state covered 130,000 people and paid $473,000 in claims for autism insurance. Under the Department of Economic Security, the Division of Developmental Disabilities provides services to young kids to help them socialize. Once they go to school, special-education programs pick up the torch.
Therapy is intensive.
Typically, after 70 hours of observation, most children then work with therapists anywhere from 25 to 40 hours a week. The therapists help socialize kids on how to communicate and get along with others. There is a lot of positive reinforcement, high-fives, and praise for behaving appropriately.
So when the young Etter boy was diagnosed in summer 2014, his parents had options. He qualified for the Arizona Long Term Care System, and he received ABA therapy.
“We started seeing amazing changes,” his mother said. “He would sit in circle time at school or say ‘I don’t want that,’ rather than scream and bite people. He could hold a pencil and scissors.”
His reading scores were normal. His parents were hopeful. Then, good news turned to bad.
In summer 2016, Micah Etter graduated from medical school at the University of Arizona and started his residency at Banner's University Medical Center in Tucson.
That’s when everything changed.
Until that point, DES provided care. But now the boy was too old. The state regards the therapy as developmental, but not as useful after the formative years. He was too young for school.
That left the Etters with only two choices: Get Banner to cover it through the company health care plan, or pay out of pocket.
The law exempts employers from having to meet Arizona’s insurance standards for any of three reasons:
• Companies with fewer than 50 employees.
• Companies whose insurance is underwritten in another state.
• Bigger companies that are self-insured.
Banner is self-insured, and that’s at the heart of the legal dispute now in federal court.
In 2010, around 29 percent of U.S. children were covered under such self-insured programs. Another 4 percent of families pay out of pocket, and 10 percent were uninsured altogether, according to Autism Speaks.
When Micah Etter asked Banner to help pay for his son’s ABA therapy, Banner refused.
Banner did not respond to an emailed interview request. But the company’s thinking emerges from emails it sent the Etters.
Basically, the company felt it was not compelled to cover ABA and exercised its discretion.
In their legal complaint, the Etters allege Banner changed its reasoning for denying the coverage, in violation of two federal laws. The Etters accuse Banner of violating a 2008 law that says insurance plans cannot discriminate between physical and mental health care, as well as a 1974 law that sets minimum standards for health plans.
At first Banner directed the Etters to Cigna Behavioral Health Inc., Banner’s claims adjuster. The therapy wasn’t in the plan and could not be covered. It was deemed “non-medical counseling” and “ancillary,” according to the lawsuit. In short: not medically necessary.
Micah Etter pushed back. He got a copy of the plan, and found it said that ABA was not included because it “is considered experimental or investigative.” A Banner representative concurred, the lawsuit claims.
Because that was what the plan said, Etter’s ability to appeal was denied.
On October 31 last year, Jami Allred, Banner’s senior director of benefits, emailed Micah Etter, who by now had been working the phones and using any tool he could to get help for his son.
“I am aware that you have been frequently calling and emailing the HR, Benefits, and Benefit Plan Administration offices because you disagree with the Banner employee health plan exclusion of ABA therapy,” Allred wrote.
“While the Banner Plan Administration staff have explained to you that Banner does not cover ABA therapy because it is still considered experimental, you have asked why Banner ‘feels comfortable using its ERISA status to circumvent’ the Arizona state insurance law.”
He was referring to the 1974 Employee Retirement Income Security Act, which the Etters now allege Banner violated.
Allred went on to take issue, laying out the likely defense in court.
“Nothing in ERISA exempts or relieves any person from a state law which regulates insurance; but a self-insured employee benefit plan is not deemed to be an insurance company or other insurer for purposes of any state law purporting to regulate insurance companies or insurance contracts,” he wrote.
“Taken together, these ERISA provisions establish that a self-funded employee benefit plan is not subject to state laws that regulate insurance companies.”
Micah Etter didn’t stop. He kept pushing.
Then in January, he got a letter from the company president, Peter Fine.
“I understand that you have contacted several Banner Health executives, along with at least one board member, to provide them with information about the validity of ABA therapy,” Fine wrote. “Since the denial was not based on medical judgment or rescission of coverage, it is not eligible for external review.”
“I recognize that this has been a difficult decision for you to accept, and that you are only doing what you feel is right for your child,” Fine continued. “Unfortunately … no Banner executive or board member can reverse the denial of coverage in your case. I know you are only advocating for your child, but contacting Banner staff or board members about this decision will not bring about a different outcome.”
During the back and forth over coverage, the boy worsened, his mother said.
The Etters had to seek help from friends and family and pay what they could out of pocket. The boy still needs 30 hours a week of therapy at $100 an hour, Laura Etter said. The family just couldn’t manage, so they scaled back the hours and paid what they could.
“He’s regressed a bit. The latest thing: He’s spitting at people. He’s back to throwing himself down on the floor when he doesn’t want to do things,” she said.
“Our whole goal was to get the insurance company to say ‘Stop bothering us. We’ll cover it.’” Laura Etter said. "But that’s changed. This has now become bigger than just my child. We’ve been so fortunate and blessed. We’ve had friends who can provide services and family who can help with the cost. Filing the lawsuit is one way we can help other people who are less fortunate.”
The lawsuit seeks a court order forcing Banner to scrap its policy that ABA is experimental and to pay damages and costs to employees with autistic children.
It’s not clear what chances it has in court. But, said Anne Ronan, the attorney with the Arizona Center for Law in the Public Interest who filed the suit, it’s an area of law that hasn’t been tested.
It comes as uncertainties are growing about health care and mental health coverage. Congress is debating the repeal and overhaul of former President Barack Obama’s signature legislation, the Affordable Care Act. One of the least controversial elements of the ACA is that it prohibits insurers from denying coverage based on a pre-existing condition.
It’s not clear if or when the law will be replaced, or how. The other law being challenged in the class-action suit was an ancillary act, the 2008 Mental Health Parity and Addiction Equity Act, which says there is no difference between coverage of mental and physical health.
The Etters say Banner violated it by “arbitrarily” discriminating against autism patients. But it’s unclear what part of that act will remain either.
Over at SARRC, the Southwest Autism Research and Resource Center, president and CEO Daniel Openden sees a mixed future for families like the Etters.
He said he’s been watching with concern what is happening to the health exchanges under the ACA. All the providers of autism therapy have pulled out, while only one entrant emerged, Openden said. “Now we only have one provider. If Obamacare goes away, will there be any options for coverage?”
He says the consequences of denying or reducing treatment are no different from for a physical injury and that the Etter boy’s experiences are typical.
“If you took medication for something, and all of a sudden you take it away or cut it back, you’re not going to have the same effects as before,” he said.
And as more autistic children age and grow up, the costs to society escalate, he and other advocates such as Autism Speaks have long argued. Autism is treatable, at least to the degree it can be managed and not disabling.
But advocates for and parents of autistic children tend to be roll-up-the-sleeves types, too. Openden sees reasons for hope amid the climate and despite the lawsuit, which he declined commenting on.
All but a handful of states now have laws requiring insurance for autism treatment. Many large employers, have chosen to add coverage, Openden said. Those include some of the biggest corporations in America, names like IBM, Microsoft and Capitol One.
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"They are opting in. And all self-insured companies still need a third-party administrator, and increasingly they are baking coverage into their plans. That forces companies to affirmatively opt-out, which is harder."
In the meantime, Arizona parents are left to muddle through.
“Just because my blond, blue-eyed son can look at you on the playground and smile like any anybody else, doesn’t mean he doesn’t have something profound going on internally,” Laura Etter said.
“If you can help others, why wouldn’t you? This lawsuit won’t help my 5-year-old son. It might help him when he’s 7. It could help other kids.”