Editor’s note: This story discusses suicide and self-harm.
On the eighth floor of Lurie Children’s Hospital of Chicago, a door and handle on a patient room in the adolescent psychiatric unit cost nearly $10,000. They’re designed so nothing can hang on them — so children can’t harm themselves.
The chair in the colorful hallway is weighed down with sand, so heavy it barely budges — and can’t be used as a weapon. Even walls in a patient’s room need to be softer, to cushion the blow of a banging head. In fact, each patient room can cost around $1 million, a steep price tag many hospitals can’t afford, or don’t want to spend.
Even though Chicago is the state’s hub for research-focused hospitals, attracting patients from around the globe, Lurie is unique. It’s part of a small club of hospitals here that offer inpatient psychiatric care for children.
Much of this comes down to money. The ripple effect on young patients with few options, particularly if they are low-income, is profound. Low-income patients typically have Medicaid health insurance or none at all.
Most of Lurie’s patients have Medicaid. In fact, an estimated 50% of all children in Illinois do, new research shows. But options for these children are limited. A WBEZ investigation found a state program known as SASS for low-income children in mental health crisis is falling woefully short, in large part because there are so few places to send kids for care.
“We need other places to step up and say, these kids matter,” Lurie child psychiatrist Dr. Aron Janssen said during a recent tour of the unit. “This treatment is important. And no matter what the investment is, we need to make it.”
During the height of the COVID-19 pandemic, with Lurie’s 12-bed adolescent unit full, some 30 children were waiting on other floors for a psychiatric bed here, Janssen said.
Some families just show up in the emergency department as a way to get in the door.
By law, hospitals must stabilize patients. They can’t turn them away.
“We used to get calls from outpatient providers with direct referrals saying, ‘My patient is in distress. I think they would benefit from a hospitalization,’” Janssen said. “Those don’t happen anymore because we never have the space.”
Even as the mental health of children has been fraying, psychiatric hospital beds for these young patients have been vanishing. Across Illinois, the number of beds for youth dropped some 20% over the five-year period ending in 2020, the most recent state data shows.
The supply was never large. Only around 15% of all hospitals in the state — around 30 hospitals out of roughly 200 — have psychiatric beds for kids. Most are in the Chicago area, and some of their units are small, with just a dozen beds or so.
Several of the research-focused hospitals in the Chicago region that treat the most complex patients, and typically have the most resources, only provide outpatient mental health treatment for children. Most did not respond or declined to explain why they don’t have inpatient psych beds for the youngest patients.
“It was cold and I was hungry”
The experiences of a teen named Janice underscores what’s at stake when pediatric psychiatric beds are in short supply. WBEZ is not using her real name to protect her privacy. She is among the most vulnerable of all children. She’s been in foster care for years and is grappling with emotional trauma.
Last year, Janice had a breakdown, started cutting herself and her ex-girlfriend’s uncle called 911. She was living on the Far South Side and wound up in the emergency room at Roseland Community Hospital nearby.
A crisis mental health worker through the state SASS program evaluated her and determined she needed inpatient hospitalization.
Roseland, a safety net hospital that treats mostly low-income patients, had recently closed its adolescent psychiatric unit. The other facilities with beds said they couldn’t take her. Janice wound up on a regular floor at Roseland for nearly a week.
“It was cold and I was hungry,” she said. “They took my phone so all I did was watch TV and sleep. It was boring and lonely.”
Eventually the crisis worker determined Janice was safe to leave the hospital. During that entire time she received no mental health treatment. She recently turned 18 and is still struggling with emotional issues.
A money loser
A journey to Lurie helps explain why hospitals shy away from inpatient psych beds. Lurie actually loses money providing this care, Janssen said, though it’s not clear how much.
The Medicaid reimbursement from the state and private Medicaid insurers isn’t enough to cover the cost of treatment.
“When you’re making the case for a unit that makes you a significant amount of money … and the unit that loses money, it’s easy to see why a hospital chooses the former,” Janssen said.
A cardiologist, for example, can bill for multiple patients a day, in addition to performing expensive procedures that bring in money for a hospital, like putting in heart stents.
Staffing is also a major issue, particularly finding child psychiatrists. This is a nationwide struggle. Lurie often needs three to five employees in the adolescent psych unit around the clock.
And there’s the fear that more children might stay much longer than necessary. About a quarter of children in Lurie’s unit are waiting for a bed at a residential facility (there’s a shortage of these beds, too). Some have been waiting for more than three months — and that’s another bed not available for a child referred through SASS.
At UI Health, the only other big teaching hospital in Chicago that has a pediatric psychiatric unit, some children stay four to five months waiting to move on. This small unit only takes the most tough-to-treat referrals from state child welfare services.
During a recent tour, a mural showcasing Chicago in space covered the length of a long hallway. There were just six patients instead of nine. Dr. Michael Naylor, who opened the unit almost 25 years ago, attributed that to a young patient who had destroyed several mattresses, and they needed to be replaced.
Naylor called UI Health’s adolescent psychiatric unit a “loss leader,” and pointed to other expenses that could scare off a hospital: Spending millions of dollars updating the psych unit every few years to make it safer for suicidal youth.
UI Health’s neighbor, Rush University Medical Center on the Near West Side, closed its adolescent psychiatric unit in 2019 over safety concerns. The unit wasn’t typically full either, said Dr. Robert Shulman, acting chair of Rush’s department of psychiatry and behavioral sciences.
Instead of undergoing an expensive renovation to meet standards, Rush instead opted to beef up outpatient mental health care for children, to prevent hospitalizations down the road.
“You get more bang for your buck if you cannot be reactive, but be proactive,” Shulman said.
Outpatient care can be more effective than sending a patient home after a week in the hospital, back into the environment that potentially fueled their mental health crisis, he said.
Shulman added that private insurance, just like Medicaid reimbursements, also doesn’t cover the cost of hospitalizing a youth in a mental health crisis in many cases.
Investing in psychiatric beds for youth
There are some hospitals bucking the trend. UnityPoint Health plans to open a nearly $30 million child and adolescent behavioral health center in West Peoria with 44 beds. There’s a severe drought of pediatric mental health care in the area.
Currently the health system’s Methodist Hospital has 23 beds, but the need is so great that Methodist says it has turned away more than 2,000 kids in at least the last five years. Many have ended up at hospitals in the Chicago area, far from home.
UnityPoint leader Mary Sparks Thompson knows just how expensive this care can be.
“If we wanted to make tons of money, adolescent psych is not the area that we would be expanding in, but really it’s part of our mission and our overall calling to provide that service,” Sparks Thompson said.
To guard against potential losses, she said the health system is leaning on its community. So far, the project has raised about $12 million.
Dr. Sandra DeJong, a child psychiatrist in Cambridge, Massachusetts, and secretary of the American Psychiatric Association, said she’s concerned about what happens when the current crisis wanes.
“Those units are going to be closed again [as] the level of demand goes back down,” DeJong said. “We need a system that can flex.”
She said that means building up the entire pipeline of care — from outpatient to inpatient care — so children can get treatment at every point along the way.
This is the goal in Illinois. Gov. JB Pritzker released a blueprint last month for revamping the mental health system for children. The report calls for getting government agencies that now operate in silos to collaborate more and share data to understand gaps in services.
And the roadmap calls for paying providers more — which could potentially translate, one day, into more services for children in crisis.
Kristen Schorsch covers public health and Cook County for WBEZ. Sarah Karp covers education for WBEZ.