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Sweet Barren, with Erie Family Health in Humboldt Park, has spent hours building a database to help struggling families find outpatient mental health therapy appointments.

Manuel Martinez

Kids in crisis face long waitlists as they struggle to get appointments for therapy

About twice a month, the counselor at a large elementary school on Chicago’s Northwest Side calls a hotline to get an emergency mental health assessment for a child she thinks is in critical need of help, though it sometimes feels like a useless exercise.

A crisis worker comes to evaluate the child through a state program. If they think they’re likely to harm themselves or others, the child is usually routed to a hospital psychiatric unit, sometimes far from home. But for the majority of kids who need regular intensive therapy, the counselor said they often get nothing.

“If the child needs therapeutic services … there’s no follow-up,” said the counselor, who WBEZ isn’t naming because she did not get permission from Chicago Public Schools to be interviewed. “They have really fallen behind.”

The state program is called Screening, Assessment and Support Services, or SASS. It’s supposed to streamline the process for getting mental health services to children from low-income families on Medicaid and those with no insurance when they are in crisis.

But a WBEZ investigation found the program is falling woefully short. SASS workers can be a real help, but they don’t have enough treatment options to send kids in distress. The state largely outsources this program to private insurance companies with Medicaid contracts. But the state only recently started requiring insurers to secure appointments for children after a SASS crisis intervention, or after a child is discharged from a hospital.

“We think (the insurers) have more levers at their disposal to get kids some of those follow-up appointments,” said Ben Winick, chief of staff at the Illinois Department of Healthcare and Family Services, which oversees SASS. “Obviously, not always as successful as we would like, and, with the way things are today, even if you have commercial insurance, it can take a long time to get an appointment.”

Systemic issues, exacerbated by the pandemic, make it difficult to get outpatient therapy, particularly for the children of low-income families SASS serves.

Many therapists don’t take insurance at all, let alone treat children, making therapy expensive or not accessible. The workforce shortage in health care also means some places that typically treat patients who have Medicaid have waitlists that are so full, they’re closed.

Kids with private insurance tend to have larger networks of doctors.

“Definitely, there’s a two-tier system,” said Dr. Mary Dobbins, a downstate child psychiatrist.

A new large national study involving Lurie Children’s Hospital of Chicago illuminates the disparity. Only 56% of children with Medicaid who went to an emergency department in 2018-19 with a mental health crisis received any outpatient follow-up within 30 days. The rates were particularly worse for Black children.

There is also a wide variety of experiences among kids with Medicaid. Some SASS providers offer therapy in-house, others even send therapists to schools to work with children. Meanwhile, other SASS providers are overwhelmed with demand and are in communities with extremely limited mental health resources.

Many counselors in schools with children from low-income families call SASS in hopes of getting outpatient help for their students, but end up having to find agencies on their own. Second to hospitals, schools call the hotline that triggers a SASS response most often, state data shows. Schools also complain about children returning to class after hospital psychiatric care with no discharge plan and no follow-up appointments.

Another challenge around securing outpatient therapy: There’s no real-time database of available appointments, leaving families to call one provider after another.

At Erie Family Health’s clinic in Humboldt Park, Sweet Barren, a behavioral health community engagement specialist, tries to ensure access. She opens a computer file and shows an extensive database of specialists, capacity, wait times, the insurance they take and even their reviews online.

Barren has spent hours upon hours building this list.

“It’s unfortunate that this stuff is not out there already,” Barren said. “But I try not to think about that part, because it’ll make you cry.”



WBEZ

Sweet Barren at Erie Family Health’s clinic in Chicago’s Humboldt Park neighborhood.

Manuel Martinez

The lack of outpatient care has shifted the burden to primary care doctors and nurses. Some have become a stopgap of sorts, prescribing medications to kids for anxiety, for example, while they wait – sometimes for months – to see a therapist.

But this isn’t appropriate for every child. Sometimes when kids are discharged from hospitals and need intense follow-up, they instead wind up back with their family physician.

“We are ill equipped to handle that,” said Jessica Boland, director of behavioral health at Esperanza Health Centers, a group of clinics on the Southwest Side that mainly treat low-income Latino patients.

She sees a “vicious cycle” of children that churn through programs like SASS – in and out of hospitals.

“SASS on paper sounds great, right?” asked Boland. “SASS in practice? It’s severely underfunded, it’s under-resourced. If you have kids that are just immediately a safety risk, sure, that’s what we have and we can get them to hospitals. But for any of that gray area between there, it’s ineffective.”

Kristen Schorsch covers public health and Cook County for WBEZ. Sarah Karp covers education for WBEZ.

Follow them on Twitter @kschorsch, @sskedreporter and @WBEZeducation.


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