Emily and Mackenzie Neville love their brother Jake.
“Our brother can’t actually speak,” said Emily, 7. “He has that kind of autism … so it’s pretty hard for us.”
Jake, 12, has a sweet disposition and loves music, his family says. But he also has emotional issues. Doctors have told his parents, Don and Suzanne Neville of West Hartford, Connecticut, that Jake suffers from “disruptive mood dysregulation disorder,” which sometimes causes him to behave in aggressive and violent ways.
“It was hair pulling,” said his mom, Suzanne. “I could hear my hair being pulled out by the roots, and he'd pull you in and start kicking or biting." She says all she could do was restrain him as best she could and bring him to his room and hold the door shut.
“If he didn't get my attention right away, that’s when he started directing it towards his sisters," said Suzanne. "So, weakest link. He’d pull their hair. And he’d get an immediate reaction out of me."
Don paints a similar picture. He says his son would grab his neck and “rip at it.”
His sisters say the episodes were scary but they understand that Jake didn’t mean to hurt them. Jake, they believe, was struggling to communicate.
Finally, one night after a violent episode, Don called the police.
“It was shameful, to be honest with you, when the cops showed up," said Don, “that I couldn't handle my own son, and that I wasn't doing enough for him, and that everybody was going to see that.”
They ended up in the emergency room and face to face with a growing crisis that many parents encounter — an acute shortage of psychiatric beds for their kids.
Jake ended up spending 11 days in the emergency room waiting for an inpatient psychiatric bed in a room not designed for long-term occupancy. The mattress was on the floor. Jake was essentially being warehoused, waiting.
“If we took him home, he comes off the list. So we had to keep him in the ER,” explains Suzanne.
The "list' is the list of kids waiting for an inpatient psychiatric bed. The scarcity of beds is a problem nationwide: with studies showing a nearly 40 percent increase in psychiatric visits to emergency rooms over the past few years and a 17 percent decline in psychiatric beds in state hospitals, the system is in crisis.
NBC News spoke to 55 hospitals — one in Kansas said it turned away 2,000 kids last year alone. All said that during the school year, which is peak season, they were completely overwhelmed and didn't have enough beds.
The hospital where Jake waited 11 days for a bed was Connecticut Children’s Medical Center in Hartford. A hospital spokesperson told NBC News that one child waited an astounding 40 days in the ER before getting an inpatient bed.
In a statement, Dr. Glenn Focht, president of Connecticut Children's Specialty Group, said the hospital was happy to have this problem brought to light.
“Connecticut Children’s is like all hospitals across Connecticut and the country right now, trying to do the absolute best we can for these patients and families in crisis," he said. "Like the Nevilles, we too recognize the system is failing. The lack of access to appropriate psychiatric care disproportionately burdens families of children and young adults.”
Focht said the hospital was working with insurance companies, other health systems and the state to increase options for behavioral health care.
Dr. Claudia Moreno is a child psychiatrist and the head of psychiatric emergencies at the children’s emergency room at Yale New Haven Hospital in Connecticut. She says she and her team see 1,600 children a year; on a bad night, nine or 10 kids with psychiatric issues come in. Usually parents arrive with a child who they worry is going to harm himself or someone else. Once, Moreno saw a 10-year-old with suicidal thoughts.
Her hospital has 39 beds, a third of the psychiatric beds for kids in the state. But even there, kids in crisis can wait for days to be admitted.
After a year and a half of repeated ER visits, and hundreds of phone calls and numerous appeals from his parents, Jake is finally living in a residential facility where he can go to school. At one point, his parents say, they were told that the only way to get Jake permanent care was to legally abandon him. That was not an option.
They think he is happy at the residential facility, but the placement is only until the end of the summer. They’re concerned about what comes next if his time there is not extended. While his parents and sisters visit every week, Suzanne says she just hopes that he is getting enough hugs and kisses.
Moreno says Jake’s situation points out the need for more resources. She works with the Yale Child Study Center to help develop more child psychiatrists to help children like Jake.
“I don’t think we just need child psychiatrists,” said Moreno. “We need counselors, we need social workers. Child psychiatrists obviously have more expertise and learning, but sometimes a child just needs someone they can connect and that they can talk to. And can ask the right questions.”