Jill Wagner’s life changed the day her then-10-month-old son, Dean, was hospitalized after a series of seizures.
Tests revealed that Dean had a rare genetic condition that put him at risk for a host of medical issues. By the time he was discharged, little Dean already had a handful of diagnoses, including one for autism. Doctors weren’t sure if he would ever walk, talk or read.
For the next eight months, Wagner, a businesswoman and former professor who lives in Salina, Kansas, tried to navigate the complex world of health insurance for applied behavior analysis, or ABA.
ABA consists of one-on-one sessions with trained experts who try to keep kids with autism in step developmentally with their age-group peers. It’s the most common autism therapy in the United States.
Wagner and other parents of kids with autism are told ABA is essential for their children’s development. But finding a qualified provider and getting insurance to cover it can feel impossible, she said.
“It's already such a challenge to raise and cope with a child like this,” Wagner said via email. “Your entire life changes. You can’t work. You feel unqualified and have to be on the phone all the time fighting to get them help. The politics involved are extremely difficult and time-consuming. It’s literally a full-time job.”
Autism has existed as a diagnosis for less than 100 years, though the spectrum of developmental delays and behavioral differences it describes tracks back far longer.
ABA as a therapy for autism has been around for about 50 years, but coverage for it under health insurance plans is a far more recent development.
Katrina Ostmeyer, the director of clinical services for an ABA provider in Basehor called Support Integrated Behavioral Technologies, said that’s because ABA looks different than many physical health and even mental health therapies that insurance companies have more experience with.
ABA providers tutor kids with autism on social skills, consistently rewarding desirable behavior and attempting to limit antisocial behavior with a variety of interventions.
It’s specialized work, and often intense.
“When you’re looking at paying for 25 to 40 hours a week of therapy, that’s very expensive,” Ostmeyer said.
Some of it also resembles special education, which Ostmeyer said makes medical insurers question whether it should be the domain of school districts.
“Cost is a big thing, and there’s a question of who pays,” she said.
For the providers, this is all splitting hairs, Ostmeyer said. Kids with autism have a neurological condition that affects their behavioral health, and learning is a behavior. Regardless of who pays for ABA, studies show it’s a money saver in aggregate because it makes children more likely to grow up to be independent adults who are part of the workforce.
But finding a qualified ABA provider is tough, especially in rural Kansas. And getting ABA covered can be even tougher.
“There’s a lot of barriers currently in the state of Kansas for accessing ABA services,” Ostmeyer said.
‘A huge letdown’
Wagner learned that quickly after her son’s diagnosis.
Her family had private health insurance through a Blue Cross and Blue Shield of Kansas small-group plan. But it took months to find an in-network provider who could treat Dean.
Wagner said multiple Blue Cross and Blue Shield of Kansas employees told her that Dean’s ABA would be covered under her family’s plan. But by the time she found the provider, she was told the company’s “upper management” had ruled that the plan didn’t cover ABA.
The denial came in August. Wagner has lodged complaints with both Blue Cross and Blue Shield of Kansas and the Kansas Insurance Department.
“It is a huge letdown to months of anticipation and effort,” Wagner said.
Mary Beth Chambers, a spokeswoman for Blue Cross and Blue Shield of Kansas, said she could not comment on specific policyholders due to privacy reasons.
Speaking generally, she said employees are usually able to help customers determine what’s covered. She added that it’s unusual, but not unheard of, for them to get it wrong.
“As much as we strive for perfection within our customer service area, sometimes we don’t attain perfection,” Chambers said. “We can at times, unfortunately, provide incorrect information.”
Chambers said determining autism coverage can be particularly tricky because of the interplay of state and federal laws.
Kansas legislators passed a law in 2014 that required commercial insurers to cover ABA in their large-group plans — those for more than 50 employees — and in small-group plans that were offered before March 23, 2010.
The 2010 cutoff date was important because that’s when President Barack Obama signed the federal Affordable Care Act, commonly known as Obamacare.
Once the Affordable Care Act was signed, states had to begin offering an online marketplace of commercial insurance plans that the federal government would subsidize for buyers based on their incomes. The law stipulated that the federal subsidies would cover plans with a set of national “essential benefits” plus any additional benefits that states already required.
If states wanted to add any required benefits to the marketplace plans after the Affordable Care Act became law, they would have to offset the cost difference. Because Kansas didn’t require ABA coverage prior to March 23, 2010, requiring it for small-group plans would have come with a price tag, so the bill lawmakers passed in 2014 only pertained to small-group plans that were “grandfathered” in once the Affordable Care Act took effect.
That leaves a complicated web for insurance company employees — and parents like Wagner — to untangle.
Ostmeyer said it’s something legislators will have to address eventually.
“There are gaps,” she said. “They need to acknowledge those gaps and (then ask) how are we going to serve those kids with gaps? Is it by expanding the (Medicaid) autism waiver? Is it by mandating all insurance companies sold and used in state of Kansas are required to cover (ABA)? Because it is a barrier to access.”
Medicaid changes
The waiver Ostmeyer cited is a program the state set up to provide services specifically for kids with autism from birth to age 5 even if their family incomes are too high to qualify for traditional Medicaid.
The federal Centers for Medicare and Medicaid Services did not require that states cover autism services in their Medicaid plans until 2014.
Even then it was somewhat murky whether ABA would be included in the mandated services, and only about half the states have included it so far, according to the nonprofit Mental Health and Autism Insurance Project.
Tim Keck, interim secretary of the Kansas Department for Aging and Disability Services, announced in September that the state would move some autism services, including ABA, into traditional Medicaid in 2017.
At the time, the Kansas autism waiver served 65 kids and had a waiting list of several hundred more.
Mike Wasmer, the director of state government affairs for Autism Speaks, said moving ABA to traditional Medicaid was “potentially huge” for kids with autism.
“What KDADS is saying is that 88 percent of the kids that are on the waiting list are Medicaid-eligible,” Wasmer said. “So they will go off the waiting list and be able to be served (through traditional Medicaid).”
Wasmer said more families likely will sign up once they see that they won’t have a wait of potentially several years.
But there’s one potential hiccup, Wasmer said. The autism waiver allows for ABA to be provided by autism specialists, while traditional Medicaid, as it currently exists in Kansas, doesn’t recognize that classification of provider. It only allows reimbursements for services provided by board certified behavior analysts, or BCBAs.
BCBAs can be very hard to find, especially in rural areas. Ostmeyer said there are only two west of Salina: one who practices and another who teaches online courses.
Wasmer said for the change in autism coverage to have greatest impact, Kansas needs to allow services from autism specialists in traditional Medicaid, like the waiver does.
“It’s been a very successful program in Kansas to address the fact that there simply aren’t enough board certified behavior analysts,” Wasmer said.
Those are all future considerations for Jill Wagner and Dean, who was No. 211 on the autism waiver waiting list as of early last month.
Wagner decided she couldn’t wait on Blue Cross and Blue Shield of Kansas or the state Medicaid program and risk Dean losing valuable developmental time. He family is paying out of pocket for him to receive 40 hours of ABA each week in a day care setting.
That’s probably the least complicated way for a parent to navigate the system. But it comes with a heavy financial burden.
“Just imagine paying to send your two-and-a-half-year-old to an expensive university,” Wagner said.
Her son has shown significant improvements since starting ABA about four months ago. Dean now recognizes his parents, brother and their pets and can call them by name.
“He had no words before starting ABA,” Wagner said.
Dean has reduced his self-harming behaviors — less banging his head and screaming — and is calmer during meals and around loud noises, she said.
“In short, every little thing he needs to learn takes significantly more effort and a lot of repetition,” she said, but ABA is making a difference.
— Andy Marso is a reporter for KCUR’s Kansas News Service, a collaboration of KCUR, Kansas Public Radio and KMUW covering health, education and politics in Kansas. You can reach him on Twitter @andymarso
