Advocates for kids with autism had a busy day Tuesday, as they pushed a bill that would make insurance companies cover expensive treatments for the disorder.

By Rose Hoban

For kids with autism in North Carolina, it’s possible to get insurance coverage for the process of diagnosing the developmental disorder. But for the bulk of those kids, getting an insurance company to cover treatment is another matter.

A bill that’s been making a last-minute dash for a vote on the floor of the state House of Representatives would change that. The bill went through two committees on Tuesday, and was attached with seven amendments when it crossed the finish line.

House Bill 498 would ensure that kids who get diagnosed with autism before their eighth birthdays would be eligible for intensive treatment aimed at helping them function more like children without the disorder, even if the treatment is expensive.

“North Carolina is very much in the minority; autism is now generally covered by a majority of the states, including Virginia, South Carolina, Florida and Texas,” said bill sponsor Rep. Chuck McGrady (R-Henderson). “What we’re trying to do is really bring North Carolina along with the majority of the other states.”

“Harvard did a study that said the cost to society for an untreated autistic child is $3.2 million,” said John Burress, a retired businessman from Winston-Salem who has become an autism advocate. He testified before the House Insurance Committee Tuesday afternoon.

“Think of all of the educational expenses, all of the medical expenses, the Medicaid, the Medicare, all of the expenses that may come from the correctional system later in life,” he said. “If we invest a little bit up front, it’s worth it for the long pull.”

“It’s pay me now, or pay me later,” Burress concluded.

Applied behavioral analysis

Autism spectrum disorder is a range of developmental problems that span from very mild impairment to the very severe. People diagnosed with autism usually have problems communicating with others.

Someone with a mild form of the disorder may be able to go to school and work but might have difficulties connecting with peers, making eye contact or reading others’ emotional cues well.

People with more severe forms of the disorder might be unable to communicate.

“There are a lot of sensory problems involved, all that sensory information that you take in – sight, sound, hearing, touch … the brain of the person with autism doesn’t interpret it the way other folks do,” said Jennifer Mahan, director of government relations for the Autism Society of North Carolina. “It all becomes overwhelming, and that can explain some of the more extreme behaviors you end up seeing.”

“There’s a lot that we don’t entirely understand yet about autism,” she said.

The Centers for Disease Control and Prevention estimate that about one in 88 children are born with some form of autism spectrum disorder. That number has grown over recent decades, in part because diagnosis is more sensitive, and in part because of reasons that no one is quite sure of.

House Bill 498 would provide coverage for a treatment called applied behavioral analysis (ABA), which can be incredibly intense, said Lorri Unumb, vice-president for governmental affairs for Autism Speaks, a national advocacy group.

“It is causing the developmental process to occur in a child for whom it’s not occurring naturally,” she said. “It’s based on principles of human behavior.”

Unumb explained that the treatment uses positive reinforcement and repetition – sometimes extreme repetition – to help break through the communication difficulties these children have and help them learn basic skills.

She said the therapy works better the younger the children start, but is usable for older kids too, and even adults.

“So much of learning that children do is based on imitation, but a lot of severely impacted children don’t have that skill,” Unumb said.

She said specially trained and certified therapists take each skill – from feeding oneself to bathing and dressing, even waving good-bye – and break it down into component parts.

“If you’re teaching a child to touch their head, you might have to take their arm and bring it up to their head for them, prompting them, over and over,” Unumb said. “When they finally do it themselves, you reward them. I may have to do this 10 times, then I have to get the child to repeat it.

“Or I may have to prompt her 100, 200 times, eventually fading the prompt so she doesn’t become dependent on the prompts and rewards. Then you teach the child to generalize the action, to make sure she’ll do it outside, not when she’s on the couch where I taught her.”

Unumb said the repetition makes the therapy time consuming, and it must be delivered by a therapist who can interpret incremental progress in the child.

She’s seen the results in her own son, who has a profound disability. She and her husband, both attorneys, ended up paying about $75,000 per year to get ABA for their son because their insurance company would not cover the treatment.

That’s what inspired Unumb to quit her job and start advocating across the country for insurers to cover ABA.

Bill moved fast and furious

The bill was filed months ago, but it sprang to life Tuesday with hearings in two committees.

Representatives for small business and the insurance industry spoke against the bill.

“Right now, our members are consistently feeding back at us that the cost of the Affordable Care Act and the uncertainty in the marketplace in a recovering economy are putting a lot of costs on employers,” said Gary Salamido, vice president of government affairs for the North Carolina Chamber of Commerce. “We urge you … to exercise serious caution as you look at expanding and adding mandates to the health insurance market, because there is a cost to those mandates.”

A spokesman from BlueCross BlueShield of North Carolina also urged lawmakers to vote down the bill, maintaining that his company pays for all of the medical care of children with autism. He argued that ABA was more of an educational intervention than a medical one.

That idea was disputed by Unumb, who presented data from multiple studies and said many medical organizations, including the American Academy of Pediatrics, the CDC and the National Institute of Mental Health, have said ABA is an effective treatment.

She also presented data from other states that show, on average, the treatment ends up costing insurance premium payers about 30 cents per member, per month to pay for coverage for everyone.

Parents who have children with autism came to the legislature early Tuesday afternoon to talk to the House Insurance Committee about their children’s successes with the therapy, including two mothers from military bases.

“Prior to being stationed at Camp Lejeune, my husband was stationed in many other states,” said Donna Anders, whose husband is a Marine Corps colonel. The Anders have three sons; the youngest has autism. “We never ran into the issues that exist in this state.

“North Carolina has what I call an artificial barrier, preventing access to care, which is unheard of,” Anders said. She explained that Tricare, the insurance plan covering military members and their families, covers ABA for up to $36,000 a year of treatment costs, on top of medical costs and therapies such as physical and occupational therapy.

“I know of four newly diagnosed families who are not getting this therapy,” Anders said.

Keri Stevenson, who lives with her husband and children on Ft. Bragg, has both a son and a daughter with autism.

“My children started receiving therapy when they were 9 and 10, and they progressed four years in less than one year. It was just astounding,” she said. “Take care of them now, so they can be a benefit to society, so they can be the best people that they can be.”

After more discussion, the committee overwhelmingly passed the bill, which then needed to go to an appropriations committee before it could go to the floor for a vote.

Because Thursday is the crossover, where bills need to complete their legislative journeys in one house in order to stay alive, the Health Appropriations committee called a hasty meeting Tuesday evening after session ended to consider this and one other bill.

Seven amendments, and an hour and a half of discussion later, the bill emerged from the committee with a $36,000 annual cap on treatment, an age limit of 23 to receive the benefit and a handful of other tweaks.

The Autism Society’s Mahan said she was concerned about some of the amendments.

“It’s the end of a long legislative day, there were a lot of amendments to the bill and there was some confusion about the content of the amendments, in particular the one that capped coverage,” she said.

The bill’s sponsors say it will be heard on the floor before the crossover deadline Thursday, probably with one or two other tweaks before it finally makes its way to the Senate.

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