a graphic of a child who is sad and angry, a common experience for children who have complex behavioral needs that go unmet
Many children with complex behavioral needs cannot receive the services they need under private insurance. Credit: Clarissa Donnelly-DeRoven, created using Canva

By Clarissa Donnelly-DeRoven

When 13-year-old CJ gets mad, he gets really mad, really, really mad. 

“Have you ever heard the term blind rage?” He asks on a thick spring morning in Asheville. His dog, Jake, who’s also around 13 years old, sits at CJ’s feet, waiting for another half of a biscuit. 

“It’s like a movie. It’s like you’re watching it, but you can’t do anything.” 

Because he is a minor, North Carolina Health News is using CJ’s initials, rather than his full name.

This anger, this rage, it forces CJ outside of his body. It stops him from seeing, feeling, or doing anything else. The only way CJ has found to push the anger out of his body, and put himself back in, is to run around, yell, scream and push people. 

“Mostly teachers,” he says with a small side smile that seems less like he’s being cheeky and more like he’s covering for shame. 

This rage mounted as the COVID-19 pandemic unfolded. Forced into virtual or hybrid schooling, his outbursts may not have been directed toward teachers as often, but they were still there.

Though the pandemic disrupted nearly everything in CJ’s life, it did come with one small blessing: his dad lost his job at a hotel and with it, his employer-sponsored health insurance. That meant CJ finally got onto Medicaid.

But how could getting kicked off private insurance — widely considered the gold standard of care and coverage in the U.S. — and put onto Medicaid be a good thing? 

Medicaid better for complex needs

CJ has autism, oppositional defiant disorder and disruptive mood dysregulation disorder. Kids like him often cannot get the services they need when they’re on private insurance: either the care isn’t covered at all, or an insurance company caps the number of times they can receive a service thereby rendering it useless, or the copays and deductibles make the services too expensive to access.

Attorneys who work in this field say there are many kids who fit this category, but there is no centralized screening process to figure out the actual number. 

Medicaid, on the other hand, is required to provide direct access to services for kids, like CJ, who are clinically eligible. Private insurance does not have such a legal requirement. 

In part, that’s because Medicaid is operated using federal funds. A provision within federal law says that any state which accepts Medicaid dollars to pay for services for people with disabilities is required to offer those services in the least restrictive environment possible, explained Joonu-Noel Andrews Coste. She’s an attorney with Disability Rights North Carolina who examines whether the state is in compliance with that federal requirement. 

“That’s really the delineation between Medicaid and private insurance,” she said. “Because private insurance is not accepting those federal Medicaid funds, they are not under that Medicaid obligation.” 

As far as she knows, there’s not a similar provision in federal law that applies to private insurance. 

“Medicaid law basically says in a nutshell, that if a child needs a service to either make improvements, which will allow that child to be successful in life, or to not lose improvements,” Coste said, “That is a service that under the law — if a state is accepting Medicaid funds — the state must provide to that child.” 

That doesn’t always happen in North Carolina, she says, but it’s the legal basis that organizations like hers use to advocate for children.

A family seeking services for a child with complex needs is often going to have more difficulty advocating for services through private insurance than they would on Medicaid. 

“When you have private insurance, in accepting that insurance policy you have signed a contract. You have agreed to their processes to resolve disputes,” Coste said. “You’ve agreed to resolve the issue in whatever way that contract stipulates. So you’re often not going to have as much legal standing and ability to really advocate and bring the state power to bear, for example, by bringing an appeal to court, which you can do under the Medicaid program.” 

Why Medicaid often covers more

There is no single federal agency that sets coverage standards or regulates the private health insurance industry. The federal government can set requirements of private health insurance. A provision from the Affordable Care Act, for example, prohibits insurance companies from denying coverage due to a “pre-existing condition.” Another federal law, from 1996, requires some plans to cover mental health and addiction services at the same level that they cover physical health. 

But the majority of private health insurance regulation happens at the state level.

“Most health insurance companies are required to provide mental health benefits but there are no state or federal requirements that say they must be equal to the benefits that Medicaid or Medicare provides,” said Marla Sink, a spokesperson for the North Carolina Department of Insurance. “Most, if not all, health insurers also cover physical, occupational and speech therapy but again, there are no statutory requirements that these must be equal to what is covered under Medicaid.”

This means that people with significant behavioral needs are likely to have access to more comprehensive care if they have Medicaid instead of private insurance. 

“For years we have lobbied for people on Medicaid to get their disability-related needs met,” said Corye Dunn, the director of public policy at Disability Rights North Carolina. They’ve tried to lobby private health insurance to do the same. But, “private insurance companies have resisted mightily any efforts to make that happen,” she said.

“Medicaid is designed for people with low incomes and people with disabilities,” Dunn added. “Its benefit package has — from the beginning — been designed differently than private insurance, especially employer-provided insurance.”

The insurance industry, including Medicaid, also delineates between mental illnesses – which get covered – and developmental disabilities— which often do not get covered. 

“For a long time in our country, we have treated some things related to disability as health care and some not,” Dunn said. 

It comes down to a distinction between “habilitative services” and “rehabilitative services.” If somebody is re-learning how to walk and talk after a stroke, that is rehabilitative and generally health insurance will cover it. But, if somebody is learning to walk and talk for the first time — as is often the case for people with developmental disabilities, such as autism — that service is considered habilitative and will likely not be covered.

“That distinction is really blurry and messy and imprecise,” Dunn said. “Sometimes it feels like nonsense.”

Not considered health care

The issue arises most significantly for people – like CJ – with both a developmental disability and a mental health condition. When an insurance company is deciding if they’ll approve a claim, they’re looking to determine what exactly is causing the need for care. In CJ’s case, is it the autism? Or the oppositional defiant disorder? 

“Payors are going to want to blame the need on whatever they don’t cover,” Dunn said. “Anything that can be characterized as related to the autism rather than the ODD is going to get rejected, typically.”

Historically, she explained, services for developmental disability haven’t been considered health care. 

“We have treated it as somewhere under human services, and there’s a lot of bias and stigma that feeds into that,” she said. Caring for people with disabilities was seen as the responsibility of the family, individual states, or charitable organizations.

The federal government explicitly prohibits Medicaid and Medicare from paying for  home and community-based habilitative services for people with developmental disabilities, Dunn explained. But states can apply for Medicaid waivers to use funds to pay for these services. In North Carolina, that’s called the Innovations Waiver. There are a limited number of slots, with about 15,000 people statewide on a waiting list. Depending on the county, the waits can be as long as 20 years.

Waiting for him to mess up

CJ has cherubic features — chubby cheeks, big doe eyes. He likes video games, comic books, drawing, swimming and his bearded dragon. He has a quick wit, and he’s smart: he catches up quickly in his classes, despite being on a reduced schedule and missing many days due to his mental health issues.

Though he can get really angry, he can also be very sweet and caring. A few weeks ago, one of his mom’s friends came over. She was upset about something, and started crying. CJ noticed, left the room and came back with tissues for her. 

He also has a strong sense of justice. During the pandemic, one of CJ’s classmates decided to do his Zoom-classes in front of a confederate flag. It deeply upset CJ — it was the same feeling he got when he heard other white kids at school say the N-word.

Still, CJ has a lot of trouble making and keeping friends. His mom, Jane, tells the story about a time kids in the neighborhood pretended they wanted to hang out with him, only to throw rocks at him when he arrived. (Jane is also not her real name. We are using her middle name so as not to identify CJ.)

A lot of the interpersonal struggles CJ has are worsened by his recurring outbursts at school. Other kids see when he gets so mad that he throws things and runs around screaming and they remember. The adults remember, too. He says he feels like the teachers and principals are always watching him, just waiting for him to mess up again. He doesn’t feel like they want him there, like it would be easier if they could just expel him and get rid of him forever. 

“They think I’m a worthless human,” he said. “One of my teachers said that.” 

“Said what?” Jane asked, disturbed. CJ says it again and adds that the teacher has since retired.  

“Good riddance,” she says. 

‘The system itself will gaslight these parents’

Jane knows that sometimes CJ lies, or exaggerates, or tries to manipulate a situation. But she also knows that people — kids and adults — can be absolutely brutal and unforgiving of his behavior, even though, a lot of the time, he can’t help it. She’s had people she knows tell her they don’t want to be around him. She wishes that people would spend more time trying to understand what she and her son are going through, rather than launching into blame, telling her — for example — that he acts like this because she doesn’t discipline him enough. 

“Unfortunately,” Coste, the Disability Rights attorney, said, “that is a very typical situation that families find themselves in.” 

When parents can’t get their children’s behavioral needs met, she explained they feel judged and ashamed, even though the inability in this case reflects a systematic failure, rather than a personal one. 

“The system itself will gaslight these parents,” she said. The shame they feel is used against them and keeps many from speaking out. 

A gabel building with arches and the Vaya logo. Vaya health coordinates the care for people on Medicaid with complex behavioral needs.
Vaya Health’s Asheville headquarters. The LME-MCO manages state and federal funds for mental health, substance abuse and disability services in 22 counties in western North Carolina. Photo credit: Liora Engel-Smith.

“I have found that once the families find each other, they are a force to be reckoned with,” she said. “Once we start pulling back that veil, so to speak, we find this situation often — whether it’s a mental health condition, a developmental condition, a medical condition, most families on some level are dealing with the unmet needs of an individual in their family who has a disability.”

“That is a powerful tool,” Coste said. 

Therapy three times a week, versus once every two weeks

CJ’s access to care has dramatically expanded since he started receiving Medicaid coverage. For about six months, CJ was receiving intensive in-home counseling three times a week. Before the pandemic, CJ’s family had to pay $45 per session, which meant they could only afford to send him to his counselor every other week, and his psychiatrist every six months. 

Jane learned about a plethora of other tests that could help her understand what was going on with her son: genetic testing to learn about any psychiatric conditions he might have, psychopharmaceutical sensitivity testing to see what medications might work best with his body, an examination to determine if he had autism. 

All these tests were expensive, and their private insurance wouldn’t pay for them, but Medicaid would. 

Janet Price-Ferrell, the executive director at FIRST resource center, an advocacy and support group in Asheville for people with disabilities, said struggling to navigate this system is often a feature, rather than a fluke.

“There’s no centralized place,” she said. “Some years back, a parent went and paid for all these private evaluations. She’s charged like $2,000 or $3,000, and when she got to the school, those weren’t the evaluations that they could use, because they weren’t really evaluations — they were assessments.”

In North Carolina, she said, if a school thinks a child needs special education services, they must evaluate that child. But many parents don’t know that. They end up spending tons of time and money trying to figure out where to go, and what to do.

Jane has been trying to navigate this system since CJ was 8 years old. She’s spent innumerable hours on the phone with various agencies who usually tell her that she needs to talk to somebody else. All the calling around, though, means sometimes she gets lucky — sometimes she encounters people who can give her a comprehensive list of all the things her son is entitled to, and all the other people she needs to call and things she needs to say in order to get them to connect her with the care.

But, with so many people and agencies and organizations involved, it’s hard to hold any single one responsible when kids like CJ fall through the cracks. 

Too little too late

Though Jane and CJ have somewhat found their way, it can sometimes feel like too little too late. When kids finally get the services they need after going so long without them, the improvements take a lot longer to show up. Many of the services CJ now has access to were recommended by providers throughout his childhood, but Jane couldn’t get them covered under their family’s private insurance.

“Had I been able to access a lot of these services back when he was 9 or 10, it would have been better,” Jane said. “But I couldn’t because I didn’t have Medicaid.” 

“We always say we will never know for sure,” how many children and parents are in this position, said Coste. “Most of these kids fit that profile. When they were younger, they didn’t get the full services that they needed. Or if they did, it wasn’t enough, it was cut short. We hear that a lot.” 

When families are at the point where they come into contact with Coste, they’re usually in crisis. 

“You’ve got this child who’s bigger than the parent, and is making very credible threats to self-harm or harm others, and you need to intervene in that immediate crisis,” she said.

“It’s like this family has been asking for help for a decade, and no one has helped the family, and now we’re here.” 

About a month ago, Jane learned that CJ’s body was metabolizing one of his medications too quickly. This meant it did the opposite of what it was supposed to. They swapped the drug for something else, and since then, he hasn’t had any situations where he got aggressive. But before the switch, he’d cycle through good weeks, where he maybe had one incident, and very bad weeks — where he had 2-3 incidents a day. 

Even though he’s now had Medicaid for nearly two years, he’s still living with the fallout of all the years he went without care. He’s been in the emergency room at least four times, had one 11-day stay at the inpatient child psychiatric unit at Mission Hospital, been involuntarily committed, and had criminal charges filed against him by his school. 

All these instances are traumatic for CJ and the entire family. The last one in particular. 

Tomorrow, read about how CJ got entangled in the criminal justice system after his mental health needs weren’t met.

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Clarissa Donnelly-DeRoven covers rural health and Medicaid. She previously worked at the Asheville Citizen Times where she reported on the police, courts, and other aspects of the criminal justice system....