By Clarissa Donnelly-DeRoven
This is part 2 in an occasional series on the different types of care families and children with complex behavioral needs receive on Medicaid versus private insurance.
On Feb. 21, 2022, CJ and his mom Jane arrived at the Buncombe County Courthouse. CJ, who’s 13 years old, said he was feeling stressed. Wearing all black, he looked at the ground as he paced in a circle outside the courtroom.
CJ, who has autism, disruptive mood dysregulation disorder, and oppositional defiant disorder, was there because, on March 12, 2021, he had an outburst at school and the school called the Buncombe County Sheriff’s Department. CJ was bounding down the hall, shouting that school was a waste of time. Then, he ran outside to the courtyard and pulled down and broke a statue. The assistant principal came out and found CJ banging his head on the wall. CJ kicked a garbage can as the assistant principal came toward him. As the can fell, it hit her in the arm.
Then, on Nov. 5, CJ got upset again. He tried to run around and leave the room, but the principals formed a line in front of him, blocking his path. He ran at them like a bull, hitting them multiple times. The school said they locked down the building as a result of his behavior.
For all this, CJ was charged with assaulting government officials and making threats of mass violence.
CJ and Jane are not their real names. Because CJ is a minor, we are using his initials, and Jane’s middle name to protect CJ’s identity.
Since CJ was little and started having outbursts, Jane had spent a lot of time trying to prevent something like this from happening. But, because of limits to what kinds of care she could afford for her son under their old private insurance plan, CJ went without proper treatment for a very long time. CJ has been on Medicaid since the start of the pandemic, when his dad lost his job and private employer-sponsored health insurance.
The federal- and state-funded insurance program often provides better care for kids with complex behavioral needs. But sometimes, the help comes too late.
A good deal — but is it rigid?
CJ’s public defender joined the family in the hallway. He explained the logic of what was about to happen: if CJ pleaded guilty, he’d gotten the prosecutors to downgrade the charges to three simple assaults, one charge of disorderly conduct and one charge of injury to personal property. These are charges that carry 1-point each. It’s okay to plead to all of them because the points don’t add up. Meaning that CJ would have one point on his record — not five — and if he stayed out of trouble, it could be expunged when he turned 18.
The attorney looked at CJ and Jane with sympathetic eyes as he spoke. He said he understood that this was not ideal. He said he “always worries” about kids with disabilities racking up points because it becomes only a matter of time before they have too many — a moment when judicial and prosecutorial discretion goes out the window.
But this was a good deal, he said.
Jane nodded. It definitely looked like a better deal than the initial charges, but she worried that the requirements of the plea might be impossible for CJ to meet because of his disability. One example she threw out: the deal couldn’t require that CJ attend school everyday. His individualized education program, or IEP, dictates that he only attends a few hours each day.
IEPs are learning programs that each public school student who receives special education services has. It describes what kind of educational and social support a student needs to succeed in school. Because CJ has trouble controlling his responses to anger, his IEP is designed to help him modulate his emotional highs and lows so he can spend his school time learning, rather than in detention. This includes shortened class days, and access to a calming space somewhere in the school where he can go to process and use one of his deescalation techniques, such as drawing or listening to music.
His IEP, and his needs, are very specialized, and Jane worried that the plea agreement would be the opposite: rigid.
Also, Jane was concerned that the agreement could land CJ in an inpatient psychiatric residential treatment facility. She had heard that these facilities weren’t equipped to care for children who have both autism and mental health issues.
And another thing – she worried that they might send him to a place that accepted Medicaid, but not private insurance. Though CJ currently has Medicaid, he will be kicked off within a year of when the federal public health emergency ends, scheduled now to be mid-July. If the court decided he needed inpatient care, Jane wanted to be sure they would send him somewhere that accepted both private and public insurance.
These were questions someone less well versed in the system maybe wouldn’t have, but Jane had been swimming in all this since CJ was 8. She’d learned all the ways the system could let you down, and then send you a bill.
As the adults debated the particular treatment requirements that the plea deal might contain, CJ continued pacing back and forth. He pulled his hair in front of his eyes, hiding behind it like a curtain.
Jane explained that they had all sorts of testing in the works: the autism test again, psychopharmacological sensitivity testing to see if CJ had some sort of resistance to the medications he was taking, a neurological exam — all these things an advocate at Disability Rights told Jane she was supposed to have had access to, things no one had mentioned to her until now.
“I just want him to get the right help,” she told the public defender.
Cedric, CJ’s court counselor who works for the Department of Public Safety, and CJ’s public defender hammered out some of the language and details for a moment. They came to a conflict between if they were going to require CJ to pay restitution (he’s 13) or do community service.
As she listened to this, Jane’s eyes welled up. She looked up to the ceiling, shifting her weight back and forth.
The public defender gestured to CJ. The two walked behind a corner to privately discuss the agreement.
The overuse of institutionalization
With her son gone, Cedric told Jane that part of his job is to hold CJ accountable. But accountability is a complicated concept for a kid with autism and a mental health diagnosis that often manifests as violent outbursts toward authority figures.
In a lot of ways, CJ seems to act like a “bad kid,” but oftentimes he cannot help himself. Jane feels the push and pull of this constantly: when CJ eats the entire packet of smoked salmon she bought for dinner, he’s supposed to be punished, right? But when his school shows kids a video of the planes crashing into the towers for a lesson on 9/11, and hours later has a mass shooter drill, if CJ starts running around the hall and making threats eerily similar to those he just learned about — should he be punished for that? Or is that out of his control? Is it his disability?
Jane put her hands on her head and slowly exhaled.
“CJ is really struggling because he doesn’t want to go to the 30-day inpatient,” she said, as tears rolled out of her eyes. A 30-day inpatient assessment would mean CJ would go into a 24-hour locked facility for at least one month to get a comprehensive assessment and diagnosis of his mental health and behavioral needs. That assessment would come with a recommendation, which could be long-term placement in a psychiatric residential treatment facility.
These are facilities that are significantly overused, according to Joonu-Noel Andrews Coste, an attorney with Disability Rights North Carolina, who specializes in this area.
Under the Americans with Disabilities Act, if a child can be appropriately treated in the community, and that child wants to be in the community, the child has a legal right to be in the community, she said.
Oftentimes, if a child is determined to need a high level of care, that is conflated with the idea that the child needs to be institutionalized.
“What will be said, for example, is ‘Wow, there’s a lot going on with this kid. They need, quote-unquote, ‘placement,’” Coste said. “It becomes a stand-in for actually identifying the specific needs that that child has, and then working to address those specific needs.”
A child like CJ, with dual mental health and developmental diagnoses, has lots of complex needs but that doesn’t necessarily mean he needs to be in an institution.
“These facilities, too often, are used as a warehouse for these children,” she said. “We do acknowledge that there are certainly cases where residential treatment is appropriate. Usually, that’s because the services have not been provided all along and things have risen to such a level of chaos in the family that now we need it.
“I see that all the time,” she said. “If this kid had gotten what they needed 10 years ago or five years ago or two years ago, we wouldn’t be sitting here today with an institutional placement.”
There’s a host of reasons why that doesn’t reliably happen: a lack of providers, a lack of coverage from insurance, parents not knowing how to navigate the system.
Also, if CJ were to be placed in a psychiatric facility, he’d have to go out of state. There is no place in North Carolina that holds itself out as able to care for a child who has a dual diagnosis. He’d likely have to go to Springbrook in South Carolina, or to the Hughes Center in Virginia, Coste said — far away from his parents.
“That in and of itself is a huge problem,” she said.
Hurry up and wait
“I get wanting accountability,” Jane said to Cedric, as they stood outside the courtroom, “But when you have such disorganized thoughts, it’s hard.”
Jane lost her breath as she spoke, a mix of nervousness and a recent bout of COVID-19.
“He thinks I want to get rid of him,” she added.
“It’s a tactic,” Cedric offered.
Jane knows her son can be manipulative, but she didn’t think this was an example of it. He’s a kid, and he’s genuinely afraid of being sent away, she said. As she explained all the testing they were planning to do to make sure CJ got the right care, Cedric had a realization.
“What you’re bringing up tells me we might need to wait,” he said.
Jane was torn about this — on the one hand, yes, wait. Wait until he’s diagnosed with autism officially, until they know what his insurance will cover, until he’s been accepted at a 30-day facility. On the other hand, they were tired of living in legal limbo. They wanted the court case over. CJ had outbursts on the days they needed to come here.
“Since 3rd grade, he’s had problems,” she said. She’d tried to help him. But over and over, systems had pushed him somewhere else: his school, a private counselor’s, the juvenile justice system.
“When social services came to my house they literally said ‘People have failed this child,’” she said. “I feel like I owe it to him to do everything in my power to help.”
A ‘result of the juvenile’s poor choice’
Inside the courtroom, Jane and CJ settled in. CJ started bouncing his knee, Jane reached over and steadied him.
They listened as the judge heard a case of a 15 year old who stole his mother’s car and crashed into a house and three cars, while going nearly at the car’s top speed.
As the judge spoke to the joyriding teen, she described that even though this courtroom might look and sound like adult court, it’s not supposed to be punitive. The consequences that kids face here are supposed to be helpful. She told the kid she heard he likes cars, so maybe he’ll become a mechanic — something safer than taking his mom’s car and crashing it.
Then, it was Jane and CJ’s turn. They approached. The judge thanked them for their patience. As she looked over CJ’s sheet, something struck her interest. “Are you a February baby?!” she asked joyfully. “We’ve got all the February babies in court today.”
She asked CJ a series of questions to ensure he understood the charges against him, what his legal rights were, and what it meant to plead guilty. His voice sounded small as he answered yes, over and over. She read to CJ the consent forms that go with the plea deal, one of which contains the language that the charges are the “result of the juvenile’s poor choice.”
As the attorneys and the judge clarified the specific requirements of the plea, Jane spoke up. She said that she was concerned about CJ’s ability to comply with some of the court’s recommendations. Would it be possible, rather than have specific requirements, simply to say that he needed to do whatever his clinical providers and his Child and Family Team — made up of a parent, therapist, court counselor, and Vaya Health coordinator — decided?
The judge asked the prosecutor and CJ’s court counselor if they had any resistance. They didn’t. And so it was settled.
Because CJ’s diagnosis, assessments and treatment were ongoing, the court decided against mandating anything in particular, but rather — as his mom asked for — ordered just that CJ follow the recommendations that he’s given.
“You did very well to advocate for your son,” the judge said to Jane. Jane thanked her.
Outside the courtroom, everyone congratulated CJ on his composure.
“I’m proud of you,” Jane said. “I know it’s nerve-racking,” his attorney added.
But CJ didn’t accept the praise.
“Can we go?” he asked. He stomped hard as he walked in front of his mom, quick to get out of the courthouse and cross the street.