When North Carolina passed a 2015 law requiring health insurance companies to cover specialized therapies for children with autism, families with affected children rejoiced at the news.

But more than two years after the mandate became law, some families are no closer to getting access to the intense treatments that can cost upward of $40,000 a year.

“I haven’t met anybody who is actually affected by the law,” says Abegail McGrew, a Huntersville mother whose five-year-old daughter, Olivia, was diagnosed two years ago with autism. “I don’t know what they wrote it for.”

McGrew and her husband, Mike, spent $34,000 last year for Olivia’s applied behavior analysis therapy, after finding out in 2016 that the insurance the family receives through Mike McGrew’s out-of-state employer would not cover the therapies. Olivia works one-on-one with an experienced practitioner, going over behaviors that have overwhelmed her in the past to lessen her reactions over time.

Despite North Carolina passing a mandate for the therapies to be covered under private insurance plans, only a fraction of North Carolina health insurance plans actually do so. Indeed, only about 10–15 percent of North Carolina’s health care market is subject to the ABA-therapy coverage mandate.

Nor can coverage be bought on the individual marketplace created by the Affordable Care Act, a scenario that has led many families of autistic children back to the choice of digging deep into their own pockets or forgoing treatment altogether.

“We’re fortunate enough that we’re able to do something, but it’s not bottomless,” says Mike McGrew. “The money runs out at some point.”

Sally Pidge, who owns Charlotte’s Achieve Therapy Services, says she regularly hears from parents upset that their employer-provided health insurance will not help pay for ABA therapies. Those families can’t buy an individual plan to help after the General Assembly opted to exclude plans available through the ACA marketplace from the mandate.

“If there was one on the marketplace, I would send them one thousand families,” Pidge says.

ABA therapies are specialized and time-consuming. They require a board-certified behavioral analyst or certified technician to spend as many as forty hours a week of one-on-one time with a child. The therapist uses behavioral techniques to identify issues and slowly adjust the autistic child’s intense reactions to everyday situations. Ideally, the children can learn to handle situations or scenarios that were previously overwhelming.

Families who have used the therapies say their children have made significant progress, from older children being able to use the bathroom on their own to interacting more deeply with those around them.

“In some kids, if we can get them young enough, we can get them into typical kindergarten,” Pidge says. That’s a significant milestone that can set a child up for years of continued success.

The McGrews have seen Olivia make big strides since she began ABA therapy in 2016, on top of speech- and occupational-therapy sessions she takes. Olivia, who does not speak, can now communicate through a combination of sign language and pictures. Tantrums and frustrations have also lessened, and both parents see less “stimming,” a behavior common in autistic children where sounds, actions, movements or other stimuli are repeated as a way to self-soothe. Olivia also has begun imitating sounds, a breakthrough that brought tears to her mother’s eyes.

Now, her ABA therapist is working with her to turn and look when her name is called, a seemingly small accomplishment for those with neurotypical children but a considerable achievement for an autistic child like Olivia who also has developmental delays.

The McGrews wish their health insurance would help pay for the ABA therapies. They can only afford to send Olivia to an average of ten to fifteen hours of ABA therapy a week. They wonder what more treatments would do for her.

“If money wasn’t an issue, I would give it a go and see what thirty to forty hours would do,” AbegailMcGrew says.

Like so much with health care, figuring out if a health care plan includes ABA therapies is complicated.

The mandate requires insurance plans regulated in North Carolina to provide up to $40,000 annually of adaptive behavior therapies for those under eighteen and on the autism spectrum. Copays and deductibles still apply, so those with a $5,000 deductible or copays for individual sessions would still be on the hook for those costs.

The plans that fall under the mandate include companies with fifty or more employees that have health plans that operate only in North Carolina, says Jennifer Mahan, public policy director for the Autism Society of North Carolina, one of the advocacy groups that pushed for the 2015 law.

But those make up only about 10–15 percent of the health care plans operating in the state, with large employers often utilizing different types of health care plans, Mahan says. The state “doesn’t control a lot of the health plans out there; the federal government does.”

Not included in the mandate are plans adopted by out-of-state companies or those with fewer than fifty employees. Also exempted are self-funded plans, in which a company pays all the health care costs of its employees, while the insurance company only administers the plan as instructed. Self-funded plans are preferred by many employers because they have more control over what is offered, and, in the long run, it can cost less or provide better coverage for employees.

Companies can decide to include coverage of ABA therapies for their employees, as large employers like Walmart, Bank of America, Home Depot, and SAS have done. State employees can get ABA services for their children on the autism spectrum after the State Health Plan began covering it in 2015.

Lorri Unumb, a vice president of state government affairs for Autism Speaks, suggests families without coverage speak up.

“Go to your company’s HR and ask to add coverage,” Unumb says.

When it passed the 2015 law, the General Assembly also opted to exclude individual plans offered on the health care exchange, known as Obamacare.

There were concerns about a federal provision that says states that demand services above and beyond the basic offerings would have to pay for the increased cost, Unumb says. But none of the twenty-plus other states that have included adaptive behavior therapies for those with autism have faced those extra charges, she adds, in part because of evolving language that has increasingly classified ABA therapies as an essential part of treatment for those on the autism spectrum.

She suspects that, if the legislature were to expand the mandate to ACA plans, North Carolina would not end up having to pay insurance companies to include the coverage given that the coverage is mandated in other states.

“It’s not really that much of a threat,” she says of the odds of federal regulators coming down on North Carolina for beefing up ACA plans with coverage for the specialized autism therapies.

Premium costs do go up when ABA coverage is added, however—though not by much. Private health plans in Missouri went up by $3.12 a year for each member in 2014. In South Carolina, including ABA coverage in the state health plan cost $5.64 per member in 2015, according to data provided by Autism Speaks.

Jayashri Nandargi found out about North Carolina’s ABA exclusion the hard way, when she, her husband, and twin toddler sons moved to Winston-Salem last year.

Nandargi purchased an individual ACA health care plan for her two-year-old son Aarush, who has been diagnosed with autism, after an insurance broker erroneously told her ABA therapies would be covered.

She has since found out that the health care plan excludes the therapies and has not been able to enroll Aarush in the behavioral therapies she believes would help him communicate and overcome some sensory issues.

He receives an hour of speech and occupational therapy a week, but she wishes ABA therapies were available to him.

“I don’t know what to do,” Nandargi says. “Out-of-pocket is very, very expensive.”

The law’s shortcomings were known when it was being debated, Mahan says, and advocacy groups have tried to let families know that the mandate is far from universal in North Carolina.

But in a field as complicated as health care, not everyone has gotten the message.

Families such as the McGrews say they’re glad the 2015 law has helped some people, but they wish it went further.

“They need to revise the mandate,” Abegail McGrew says. “There’s so many companies within North Carolina that don’t operate within those parameters.”

But could the state legislature fix this scenario for families unable to get coverage? Yes and no.

The General Assembly could opt to expand ABA therapies to the open marketplace, a move that Unumb says would then at least allow families to buy plans on their own with that coverage.

State Senator Joyce Krawiec, a Kernersville Republican, is eyeing a fix for this. Even as a primary sponsor of the 2015 legislation, Krawiec says she was unaware that families were blocked from buying plans that offer ABA coverage on the open marketplace.

“The objective was to make autism insurance coverage available in all North Carolina families,” Krawiec says in a statement. “Apparently this is not happening.”

But the state does not have the authority to dictate coverage for plans that are self-supported or insurance policies based out of other states. Any changes there would have to happen at the federal level, and given the current discord in Washington over health care, that is unlikely to happen, Unumb says.

Until then, families will need to make the decision about whether to pay for ABA therapy themselves or begin looking for jobs that offer coverage.

Nandargi is hoping her husband’s employer opts to add ABA coverage to its health insurance plan next year. If not, they may leave the state and return to Ohio, where they lived previously.

“Here, I’m struggling,” she says.

A version of this story was originally published by the nonprofit news site N.C. Health News. Support N.C. Health News’s journalism at northcarolinahealthnews.org. Follow Sarah Ovaska-Few on Twitter @sarahovaska. Comment at backtalk@indyweek.com.