By Taylor Knopf
Calling the police to escort his 11-year-old son to the emergency department was one of the hardest decisions Michael Harrison ever had to make.
Wyatt has autism. His tantrums have become more frequent and violent in recent months. On Friday, Oct. 6, Harrison got an urgent call from Wyatt’s school director Linda McDonough at Hope Creek Academy, a place for kids who have developmental, emotional or behavioral issues.
Wyatt — whose name has been changed to protect his identity — was out of control.
By the time Harrison got to the school, Wyatt had escaped the building through a window and three men were trying to bring him back. Harrison knew it was time to get more help.
The Durham police escorted Wyatt to the University of North Carolina Hospital’s emergency department in Chapel Hill that Friday evening.
More than 250 hours later, Wyatt and his family were still at the ED waiting for an inpatient psychiatric bed for a juvenile to open up somewhere in North Carolina.
Unfortunately, Wyatt’s story is not unique. This is the way the system has evolved in North Carolina for people to get into long-term, inpatient psychiatric care. All across the state, patients sit and wait in emergency departments for mental and behavioral health beds to open up at few psychiatric institutions.
In fiscal year 2016-17, a total of 5,425 patients in North Carolina waited an average of 120.4 hours in the ED for a psychiatric bed to open in one of the three state-run psychiatric hospitals.
Wyatt waited more than twice that long.
Living with autism
Harrison and his wife Natania Barron knew Wyatt was different from an early age. He had extreme highs and lows.
“Wyatt meets the criteria for autism,” Barron wrote in a blog post last week. “He’s been obsessed with cars since he was 18 months old, and could spot a Saab across a parking lot before he started calling me ‘Mom.’”
He struggles socially, doesn’t understand hierarchy, and needs to control situations, she continued. However, Wyatt is very smart and excels at recognizing patterns.
“Wyatt is incredibly bright and in his best mood, he’s a joy to be around,” Harrison said. “He’s an excited kid.”
Barron wrote that Wyatt struggles with theory and tends to think in “black and white.”
“His meltdowns never end when he gets what he ‘wants’ — they just continue because he changes the narrative,” she wrote. “Once the switch is flipped, he lacks the ability to control his emotions. And anything can flip that switch.”
Harrison said that when Wyatt goes through one of his “episodes,” he will say mean things and threaten violence on those around him.
“But he feels remorse later,” Harrison said. “It’s very disturbing to watch your kid go through that.”
“The scariest thing I’ve seen as a parent, however, is that as his ‘Fugue States’ get longer and more violent, the more he hates himself,” Barron wrote. “The more he’s talked about self-harm. The more he wishes he was ‘normal.’”
Fortunately, Wyatt is able to attend Hope Creek Academy where the director, McDonough, is a veteran of the mental health system. Her adult daughter went through similar situations as a child and ultimately received care at Central Regional Hospital, but only after an extended period at an emergency department.
McDonough advocates for all her students and tirelessly updated her Twitter account with details on Wyatt’s 10-day stay in the emergency department.
“Wyatt has waited 216 hours in ER. Getting care for mental illness shouldn’t be the most grueling and demanding thing a child does,” she tweeted on Sunday morning.
The agony of waiting
Harrison said he knew getting Wyatt a bed in a long-term facility would be “a long, arduous process.” But he couldn’t have anticipated all the struggles that awaited his family at UNC’s emergency department.
Wyatt has been moved around to different sections of the ED. After going through the standard admission on a Friday, he was moved to an upstairs open-space unit for kids with behavioral emergencies.
“The other kids were social,” Harrison said. “It was good in a lot of ways. He could sit with the kids and play games and draw. There were group therapy sessions. And it was a lot more comfortable for us to come visit. There was an actual chair to sit in.”
By Monday night, Wyatt was moved to a secluded, more secure room with only a bed and rubber chair. He was restrained that night. Harrison and Barron couldn’t stay with Wyatt overnight and were surprised to see the restraint straps hanging off of his bed the next morning.
“No one told us,” Harrison said. “No one told us why. We checked in like normal, and no one told us anything.”
“My wife and I understand more than anyone that Wyatt needs to be restrained at times. We’ve done therapeutic holds at home,” he said, referring to techniques that appear to an outsider like a bear hug, but which can be used to calm a child who is physically and emotionally out of control. Research has shown that therapeutic holds can calm a child in as little as 20 minutes, compared to putting kids in a “seclusion” room for hours.
“I get that they don’t need our permission to restrain him. I understand. But they had the whole night to contact us, and they didn’t.”
Harrison said he only received confirmation that Wyatt had been restrained after he filed a patient grievance.
Wyatt told his parents that the hospital staff called him a “crybaby” and a “bad apple” as they restrained him. Because no one would tell Harrison what happened that night, he only has Wyatt’s account.
“At that point, I had no other truth to rely on,” Harrison said. “That severely impacted my level of trust with the hospital.”
During the wait, Wyatt has had a number of panic attacks. He tells his parents he just wants to go home. Harrison said it’s difficult to leave Wyatt at night.
“He anticipated I would have to leave every moment I was there,” Harrison said.
A broken system
While there have been “a few missteps” with UNC, Harrison said the hospital is not the enemy.
“The entire system is broken from a process perspective,” he said. “The system is just so screwed up.”
When the mental health system went through a “deinstitutionalization movement” first in the 1980s and then again in the early 2000s, the idea was that all the money and resources spent on hospitals and inpatient facilities would be funneled back into the community, said National Alliance on Mental Illness NC Interim Executive Director Nicholle Karim.
“What we have created is a crisis-based system,” Karim said.
“Unfortunately our system is set up for police officers or hospitals to be that first line of triage,” she added. “It’s not working. That’s certain.”
Wyatt’s wait attracted the attention of lawmakers who have expressed frustration with the workings of the state’s mental health system. Rep. Graig Meyer (D-Durham), the only social worker in the legislature, tweeted in response to Wyatt’s wait last week.
“It’s important that we understand the dysfunction in our mental health system. This should be a campaign issue,” he said.
UNC Health Care Spokesman Tom Hughes said “that behavioral health needs are a growing concern in North Carolina as patients and their families often have no access to community solutions. This can result in large numbers of patients seeking treatment in emergency departments.”
“Our goal is to provide compassionate care and support for these patients. Unfortunately, some are forced to endure long waits in our emergency department until space becomes available in a more appropriate facility. We continue to work with a wide range of partners to find better solutions to this problem,” Hughes concluded in an emailed statement.
Harrison wonders if this traumatic wait in the ED will ultimately cause his son more harm than good. But this is the way it works in North Carolina.
On Monday night, a bed opened up for Wyatt at Brynn Marr Hospital in Jacksonville, two-and-a-half hours away. The wait ended and he will likely be transported there Tuesday morning.
This article includes a source who North Carolina Health News chose to grant a degree of anonymity. We chose to retrospectively change the name of Wyatt Barron at his request to protect his privacy.
Having been there many times, I know the drill. Unfortunately, they never check for medical causes for behavior once they hear the Autism diagnosis. I went for several years asking for a doctor to look in my son’s ears. They either refused or looked and said his ears were OK. I was finally referred to a PCP, who looked and said, “This is the worse ear I’ve ever seen. He’s had constant noise, and if I had this ear I would be psychotic.” They finally cleaned out his ears and his behavior returned to normal. Now he’s much older and I’ve been through years again of getting them to address his GI pain. They will do some treatment in the ER, but will not scope him. He’s had symptoms of Cushing’s Disease for almost ten years and will not do the MRI. They did one at UNC, but did the wrong one and then refused to repeat it. Life is horrible for him and me. I recently read a book, “Brain on Fire,” and couldn’t believe that ignoring medical symptoms, when there are behaviors seems to be the norm in medical practice. Of course, you make alot more money the more you get it wrong. If you get it right, the profits go down.
I would not give my 11yo son over to the institutional system and Haldol and restraints under any circumstances. That, and plastering the child’s private story on the internet for the world to see, are horrible choices.
Perhaps those choices are a measure of this family’s desperation. As the other commenter ahead of you notes, their experience is not unique, but usually happens out of sight.
So sad that our mental health system in NC is broken. We need more money to support mental health. It is just as important as physical health! If you have experienced mental issues you understand! So sad the mental health system must improve now!
I’m not so sure we need more money, but we need to see that the money we have is well spent. There has been constant medicaid fraud in my son’s services. It was documented, reported, and I followed up. None of the people who committed it were ever charged or banned from further employment in Medicaid. I’ve repeatedly asked that IBM Watson be used to review my child’s medical records to find errors and suggest possible diagnoses. It would save medicaid alot of money. Both hospitals get very nasty , and several doctors have said, “If we used Watson, we would be replaced.” Unlike Medicare, we don’t even get a monthly statement, so it’s not telling how much has been billed we don’t even know about and could report. Almost everyone I’ve dealt with in medicaid wants the program to run for them and their salaries, not the recipient.
While we as a society may have moved forward away from the likes of Willow Brook State School/NY-see Netflix, we have a long way to go. ED’s are the front line of the distance unresolved in a broken system and there staff need to take care of themselves to be as compassionate as can be with hard to manage patients. It takes a very unique human being to have the day to day empathy and regard for IDD issues, if parents are able they do meet the challenge but that’s not always the case, especially when the village is not supportive. There’s enough suffering to go around, God knows we can do better and the more light of day these issues have, the better.
Some MCO’s guarantee a 10+ day wait by requiring a 10 day advance authorization request for some services and then they have 15 days to respond to that request and authorization is not guaranteed. Many providers will no longer accept these kids until the authorization has been approved due to being burnt by the MCO in the past. If the provider makes a mistake on the authorization request, many times the MCO will just say it’s unprocessable and then the clock starts over. Definitely a flawed system.
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