By Sarah Ovaska-Few
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 upwards of $40,000 a year.
“I haven’t met anybody who is actually affected by the law,” said Abegail McGrew, a Huntersville mother whose 5-year-old daughter was diagnosed two years ago with autism. “I don’t know what they wrote it for.”
McGrew and her husband spent $34,000 last year for daughter Olivia’s applied behavior analysis (ABA) 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 cover the therapies.
Surprisingly, only about 10 to 15 percent of North Carolina’s health care market is subject to the ABA 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,” said Mike McGrew, Olivia’s father. “The money runs out at some point.”
Sally Pidge, who owns Charlotte’s Achieve Therapy Services, said she regularly hears from parents upset that their employer-provided health insurance will not help pay ABA therapies.
Those families can’t buy an individual plan to help after the state legislature opted to exclude plans available through the Affordable Care Act marketplace from the insurance mandate.
“If there was one on the marketplace, I would send them 1,000 families,” Pidge said, about the demand for health care plans that cover ABA therapies.
How ABA works
ABA therapies are specialized and time-consuming and may cost as much as $40,000 a year. It requires a board-certified behavioral analyst or certified technician to spend as many as 40 hours weekly 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 an older child 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 said, a significant milestone that can set a child up for years of continued success.
The McGrews have seen Olivia, 5, 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 her needs 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 10 to 15 hours of ABA therapy a week.
They wonder what more treatments would do for Olivia.
“If money wasn’t an issue, I would give it a go and see what 30 to 40 hours [of weekly ABA therapy] would do,” Abegail McGrew said.
Exceptions to the mandate
Like so much with health care, figuring out if a health care plan includes ABA therapies is complicated.
The mandate, as passed, would require insurance plans regulated in North Carolina to provide up to $40,000 annually of adaptive behavior therapies for those under 18 and on the autism spectrum. Co-pays and deductibles would still apply, so those with a $5,000 deductible or co-pays for individual sessions would still be on the hook for all those costs.
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The plans that fall under the ABA mandate include companies with 50 or more employees, and who have health plans that operate only in the state of North Carolina, said 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 to 15 percent of the health care plans operating in the state, with large employers often utilizing different types of health care plans, Mahan said.
The state “doesn’t control a lot of the health plans out there, the federal government does,” she said.
Not included in the mandate are plans adopted by out-of-state companies or those with fewer than 50 employees. Also exempted are self-funded plans, where a company pays all the health care costs of their 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 said.
Many times companies will add it to try to remain competitive and keep talented staff who have children in need of services.
Blocked from the open marketplace
When it passed the 2015 law, the North Carolina legislature also opted to exclude individual plans offered on the health care exchange, known colloquially as Obamacare.
There were concerns about a federal provision that says states who demand services above and beyond the basic offerings would have to pay for the increased cost, Unumb said.
But none of the 20-plus other states that have included adaptive behavior therapies for those with autism have faced those extra charges,
said, 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 North Carolina, if the legislature were to expand the mandate to ACA plans, would not end up having to pay insurance companies to include the coverage given that the coverage is mandated in other states.[sponsor]
“It’s not really that much of a threat,” she said, about 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.
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 2-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 said. “Out-of-pocket is very, very expensive.”
The law’s shortcomings were known when it was being debated, Mahan said, 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, but wish it went further.
“They need to revise the mandate,” Abegail McGrew said. “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 legislature could opt to expand ABA therapies to the open marketplace, a move that Unumb said would then at least allow families to buy plans on their own with that coverage.
State Sen. Joyce Krawiec, a Kernersville Republican, is eyeing a fix for this.
Even as a primary sponsor of the 2015 legislation, Krawiec said 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 wrote in a statement to N.C. Health News. “Apparently this is not happening.”
But the state does not have the authority to dictate coverage for those health care 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 said.
Until then, families will need to make the decision about whether to pay for ABA themselves or begin looking for jobs that offer coverage.
Nandargi, the Winston-Salem mother, is hoping her husband’s employer, BB&T, opts to add ABA coverage to the health insurance plan next year. If not, the inability to get ABA therapies may mean leaving the state and returning to Ohio, where they lived previously.
“Here, I’m struggling,” she said.
This story was co-produced with the EdNC, a North Carolina-based nonprofit news source focusing on the state’s educational system.
My daughter has autism as a secondary diagnosis. She also has global developmental delays which led us to dig deeper. Ultimately we found a genetic mutation that provides her with a medical diagnosis. This is a key distinction that a lot of families don’t recognize. Having that medical diagnosis beyond just the autism diagnosis will open doors for families. I would encourage readers to consider having their child genetically tested. I know it’s expensive since we paid for a large chunk of it out-of-pocket ourselves, but ultimately the payoff is proving to have made the investment well worth it. Having a medical diagnosis allows families to apply for one of the Medicaid-waiver programs that this state offers. Since Medicaid covers ABA therapies, the rewards are vast. Our next hurdle: there are long wait times to get ABA services from providers who accept Medicaid, but at least they exist and at least we’ll get some help to cover the costs.
10 year wait for the Medicaid waiver.
I actually dumped my insurance because, with insurance, speech and occupational therapies were $250 an hour. On top of my premiums. It’s much cheaper without insurance. Even with the penalty.
You are on your own in this country.
They don’t even acknowledge that there’s an epidemic.
I believe one of the main reasons our Legislature passed this law was to ensure that ABA did not become an educational mandate. If they could say it’s a “medical” treatment then it may not have to be provided in the schools (as other therapies are now done). Many other states incorporate ABA therapists into their autism classrooms in the public schools which is a much more equitable way to provide it. Here in NC, not only do our health insurers not always provide it but if you are lucky enough to get ABA covered by your health insurer the public schools will not allow the therapists into the classrooms to provide it during school hours. Given ABA is a very time intensive therapy that is often needed for 30+ hours a week, not having school hour availability means decreasing possible effectiveness of therapy.
This law did NO good for our autistic children in NC. Time to reconsider providing ABA, an evidence based effective therapy for autism in public schools!
This story hits right at home. We moved to Guilford county from Colorado just as the school district did away with it’s e.c. Classrooms and teachers. We have been unable to find adequate services for my now 13 year old aspie. We are in a family crisis, with weekly assaults on me and the house, another year of uncontrollable bullying at schools (public and private) leading to a total shutdown, and an inability to find or meet others who know how or where to get help. Can’t get aba no way at all. We have been told directly by both the ER at cone and Brenners that ‘we can’t admit your son into the inpatient program because of his autism.’ The police are very nice when they come, he is usually calm by then. I work for a large nationwide employer in the Healthcare field, and autism and aba is excluded from my policy! I make too much for medicaid and state assistance. No where to turn. We have been on multiple waiting lists for about two years now. First question they all ask ‘do you have medicaid?’. Federal law says medicaid can’t be turned away, they must service medicaid first. Without enough providers, families fall thru the cracks and cannot get help, Thats us. Greensboro has been a long string of disappointments. We are moving. Pitt County looks very good in terms of supporting autism needs. Now I’m thinking north carolina is not the place for my family. We can’t wait for the law to change, it’s an insult to us who desperately need it to do what it the title of it says.
This is the truth. Too many children not getting help. And this is a lot of children. I have seen members of my family suffer because they are being over looked. This has been a very interesting read.
A new government survey of parents suggest 1 out of 59 children ages 3 to 17 have autism spectrum disorder. This is a lot of children.
And here’s the link. https://www.cdc.gov/ncbddd/autism/data.html
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