Without an insurance mandate in Oklahoma, family is moving to Texas to ensure son with autism continues to get treatment

Aug. 16--TULSA -- Christian McAdams was standing outside his home, talking to a neighbor, when his wife and son came out the front door.

"Hi," Ean, 3, said to his father.

Christian and Melody McAdams began rejoicing.

"Why are you freaking out? He just said 'Hi,'" the neighbor asked.

The McAdamses' reaction was because Ean has autism and is largely nonverbal. This was the first time Ean had ever greeted his father like this.

Since Ean was 20 months old, he has been in a type of therapy called applied behavior analysis. His parents say it is integral to his development and to thank for these small moments of celebration.

The goals of applied behavior analysis are to shape and reinforce new behaviors, such as learning to speak and play, and reduce undesirable ones, according to the National Institute of Mental Health. The therapy can involve intensive, one-on-one child-teacher interaction for up to 40 hours a week and has inspired the development of other, similar interventions that aim to help those with autism spectrum disorder reach their full potential, according to the institute.

But the McAdamses have run into a challenge that other Oklahoma families of children with autism face: Applied behavior analysis is not covered by most health insurance providers.

This is why the McAdamses plan to move to Texas at the end of the year, a state that requires insurance companies to cover applied behavior analysis, among other types of therapies for children with autism.

A parity law

Autism advocates have tried -- and plan to continue trying -- to pass the same law in Oklahoma. Oklahoma has a law regarding autism, but it is essentially a parity law, requiring insurance companies to cover autism like they would other disorders.

Meanwhile, opponents of mandated coverage say that applied behavior analysis is an educational, not physical health, therapy, and it should be provided outside the realm of private health insurance. They also raise concerns about how costly the therapy is and the impact it could have on premium costs.

Applied behavior therapy can cost $10,000 a month, on average, although it ranges, depending on the child's need and his or her treatment regime.

Ian Santus, regional director at ACI Learning Centers, which provides applied behavior therapy in centers in Oklahoma, Texas, Colorado and Kansas, said people should consider how much it will cost if these children don't receive the care they need.

"I think, unfortunately, a lot of people look at that number, and it's scary to them and I totally understand that," Santus said.

"But the numbers I think are more important are -- what happens if that child doesn't receive therapy? What happens when that child is 10 and 15 and big and able to hurt other people, or is 20 and isn't working and requires assisted living or group therapy or a state facility? What kinds of cost are we looking at for that child at that point? Not to mention the major opportunity costs because that child is 20 years old and doesn't have life skills to live on their own."

Judith Ursitti, director of state government affairs at Autism Speaks, a research and advocacy organization, said this argument has resonated in conservative states like Texas, Georgia and South Carolina.

Ursitti advocated with other families in Texas after she was told by her insurance company that treatment for autism for her son, Jack, would not be covered.

Over the past eight years, Texas has passed and updated its law to not only mandate coverage for children with autism but also includes applied behavior therapy and doesn't include an age cap.

"Texas is a very conservative, business friendly state, a very similar environment to Oklahoma, but they put their toe in the water, and they went back and expanded and expanded, and the reason they've been able to do that is because the fears they had around cost did not come to fruition," Ursitti said.

Reinforced learning

Ean goes to Therapy and Beyond in Tulsa, where he receives individual applied behavior analysis therapy. When the family moves, Ean will go to a Therapy and Beyond location in the Dallas metro area.

Melody McAdams said since Ean has been through the therapy, he has learned to use silverware, is almost potty trained, can drink through a straw and can communicate using a sheet with photographs of different things he wants.

On a recent afternoon, Melody McAdams held the sheet, and Ean pointed to a potato chip.

"Look me in the eye," she requested.

Ean looked up at her. She rewarded him with a chip.

These are the types of things that Melody and Christian McAdams have learned to do to reinforce what Ean learns at Therapy and Beyond.

Research has shown that intensive behavioral therapy during the toddler or preschool years can significantly improve cognitive and language skills in young children with autism spectrum disorder, according to the National Institute of Mental Health. There is no single best treatment for all children with autism.

Applied behavior analysis is a "widely accepted treatment" for autism, the institute reports.

Bonnie McBride, associate pediatrics professor at the University of Oklahoma College of Medicine, said applied behavior analysis might not be the only type of treatment a child with autism receives, but these types of interventions should be part of their care.

"Do we know everything as an exact science?" McBride said. "Absolutely not. We have a lot to learn still, but I would say it's safe to say, and I feel confident saying this -- that behavioral intervention should be a part of every kid's treatment plan."

Children with autism can have significant and challenging behaviors, such as frequent meltdowns and aggression toward others or themselves, McBride said.

These types of therapies focus on shaping positive behaviors.

For example, certain techniques focus on developing a child's verbal behavior, helping them go from simple verbal behaviors, such as echoing, to more functional communication skills through techniques such as prompting the child with cue cards and other tools, according to the National Institute of Mental Health.

McBride said more and more research is pointing to the benefits that can be seen in children who receive applied behavior analysis.

"85 years ago, I couldn't have stated this as strongly, but now applied behavior analysis is certainly one, if not the only, efficacious intervention or treatment for autism, and while it's not the only intervention that a particular child might need, it certainly should be part of their intervention program," McBride said.

Not developing

In April, the McAdamses ran into problems with their health insurance coverage for Ean's care.

For the first two years of Ean's life, the family lived in California. Christian McAdams, 27, was in the Marines for four years as a computer networker.

The couple started to notice when Ean was almost 2 that he seemed like he wasn't developing as quickly as he should be.

Melody McAdams took Ean to a developmental pediatrician, and she expected him to tell her that Ean, who was 20 months old at the time, was a little delayed. She didn't think she would leave with a diagnosis.

"Your suspicions were correct," the doctor told her. "He has autism."

She started to cry as the doctor started to explain applied behavioral analysis and insurance coverage and more of what she needed to know.

"Stop talking," Melody told him. It was too much, too soon.

"At that moment, I realized he may never graduate high school. He may never get married. He may never have kids. He may never be able to live independently," she said. "It just hit me like that."

Shortly thereafter, Ean started therapy, including applied behavior analysis. At that time, their insurance in California fully covered the care.

And even when they moved to Oklahoma, their United Healthcare plan covered applied behavior analysis for about seven months.

But in April, Therapy and Beyond notified the McAdams and several other families that the insurance company had told the school they would no longer reimburse them for the therapy.

Ellen Laden, a UnitedHealthOne spokeswoman, said the company's 2015 health insurance plans available outside of the health insurance marketplace, the federally run HealthCare.gov site, provide coverage for autism as required by the Affordable Care Act.

But coverage for specific services, like applied behavior analysis, are based off the laws and policies of each state.

"All services are required to be medically necessary as defined by the customer's plan, and all other insurance plan provisions apply," Laden said in an email. "Because we originally provided incorrect information to Mr. and Mrs. McAdams about the services covered by the plan they chose for their son Ean, we made the decision to honor our commitment to the family and provide coverage for ABA therapy for the rest of 2015 as long as Ean's health insurance plan remains in force."

For the most part, health insurance companies in Oklahoma do not cover applied behavior analysis therapy, including Blue Cross Blue Shield of Oklahoma, the largest health insurance provider in the state.

Dr. Joseph Cunningham, the company's chief medical officer, said in an email statement that Blue Cross does provide an autism benefit for fully insured group health plans.

The autism benefit is part of the company's standard group health plans and includes "certain autism-related medically necessary services," including evaluation and management procedures, occupational therapy, physical therapy and speech therapy visits for children younger than 6 with an autism diagnosis.

There is generally no limit on the number of visits per year a child under 6 can receive, Cunningham said.

This excludes some grandfathered plans that don't fall under the Affordable Care Act's regulations on care and some self-funded plans.

Meanwhile, children ages 6 and older have regular medical benefits that include standard limits of a 25-combined maximum for occupational therapy, physical therapy and speech therapy visits per year.

"Blue Cross Blue Shield of Oklahoma supports evidence-based medicine, which uses the best current scientific evidence to help make decisions about the care and treatment of a patient," Cunningham said. "Experimental and investigational treatments usually are not covered by health care plans, due to the lack of medical or scientific evidence supporting the safety and effectiveness of these treatments. Applied behavior analysis lacks pertinent medical and scientific research that Blue Cross Blue Shield of Oklahoma requires for its benefit plans. While health insurance benefits provide coverage for medical treatments, applied behavior analysis programs are considered to be behavioral and educational training, not medical treatment."

Meanwhile, the Council for Affordable Health Insurance, which advocates for insurance carriers, argues that private health insurance doesn't provide consistent care that children with autism need.

"If legislators want to help these families, they should create programs specifically targeted to meet their needs and properly fund them from general revenues -- better than Congress did under the Individuals with Disabilities Education Act program -- rather than try to force the costs onto health insurance, which will just increase everyone's premiums," the organization wrote in a policy paper about mandated coverage.

Decision to move

In November or December, the McAdamses will move to Carrollton, Texas, a suburb of Dallas.

The McAdamses are hopeful that moving to Texas will mean having access to quality, consistent therapy for Ean that's covered by insurance.

Melody McAdams works as a server and will transfer to a restaurant in the Fort Worth area. Christian McAdams is an electrician and plans to work in construction.

The decision to move has been hard on Melody's family. The couple and their young son have only been back from California living in Oklahoma for a year.

But this move is for Ean. The loan money they were going to use to buy a house in the Tulsa area will now go to pay for their move. Christian McAdams had planned to go back to school to study engineering. That will wait.

"We had to put a hold on a lot of things, making sure (Ean) get everything he needs first," Christian McAdams said.

Advocates have told the family it will take a few years to change Oklahoma's laws, if they're successful. But the McAdamses say they can't wait for that.

Melody McAdams had envisioned the family staying there, near her family.

But that plan didn't work out. And over the past three years, she has learned that sometimes it's best to take one day at a time.

"I told myself ... 'We're not going to worry about graduating high school. We're not going to worry about if he's going to have kids,'" she said.

"We're going to worry about if he's going to go to applied behavioral analysis today. What's he going to eat today? Did we make it to the toilet on time? And then tomorrow, we'll start all over again. Literally, living day by day, instead of thinking to the future. Of course, we're trying to plan for the future. That's why we're doing this."

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