'It's Very Sad': Reports Detail the Lack of Mental and Behavioral Health Providers for Northern Illinois Kids

August 5, 2024

Original coverage in Northern Public Radio (NPR) by Peter Medlin.

A pediatrician notices that a young child is struggling and needs mental health support like a psychologist. They make a referral and the child gets the support. Simple as that, right?

Advocates say, “if only.” They say there are many steps in the process where they lose families. After you realize your child needs help, you could spend months on a waitlist to see a mental health provider. The nearest therapist might be an hour or two away. Maybe your insurance doesn’t cover it, or you finally see someone, but then the therapist quits. Because there aren’t enough providers, high-turnover and burnout is common.

“Now you have to start over, because you have to build that trust with a therapist,” said Lou Ann Hayes. She’s a regional council manager with Birth to Five Illinois, a state initiative analyzing early childhood needs across the state.

Her region covers Stephenson, Carroll, & Jo Daviess counties. Birth to Five’s new reports focus on access to mental and behavioral health providers.

“It's very sad,” she said. “We are inadequate with the needs of our community.”

Hayes says that’s the headline. There are simply not enough mental health providers -- from clinics, to schools, to hospitals. And that creates a series of other issues that compound stress for families -- right from the beginning.

She says most people get referrals from their pediatrician or child’s doctor. But, in her three-county region, there is only one pediatrician and over 5,000 children. So, that can make it harder to catch a developmental delay or mental health concern.

Livia Bane is another regional council manager. Her region includes Boone & Winnebago counties. She says, because of the lack of providers, once you get that referral, then you start waiting. It could take months to get a screening and figure out what kind of therapy they need. The waits are long even if the child’s mental health situation is very serious.

“When you're in a crisis," she said, "you may find yourself waiting between two and up to six months for your child to be seen to really have the referral met or to actually sit down with a health care provider and come up with a plan."

Linsey McDanel knows this too well. She’s a Freeport teacher with five children, some of whom have gone through mental health crises.

“We got on the list for a psychological exam and literally our appointment was booked nine months out,” said McDanel. “Nine months! I mean, how devastating, as a parent, to know with these explosive disastrous behaviors that are turning your house upside down, that you have nine months to wait before you’re even going to have testing? And after the testing is done, they have 60 more days to fill out the paperwork.”

After all of that, you might find a therapist or psychiatrist, but depending on where you live, they might not be close. McDanel had that issue, too, coming from Freeport.

“I exhausted everything from Stephenson County into Winnebago County, even into the Chicago area," she said. "We just really struggled to find help that was making any kind of long-term difference for her."

Hayes says she’s seen people have to drive to Madison, Wisconsin or Peoria to see a provider. That could be impossible for some families without reliable transportation. Many offer telehealth services, but not many are willing to make the trip to northwest Illinois.

Now, say you’ve connected with a professional in your area, insurance could still throw a wrench in the process. It can be a challenge to find providers who take state-funded insurance. The level of mental health services available is often based on the tier of insurance you have.

Livia Bane says that’s definitely true for public insurance like Medicare, but also for private coverage.

“We also have those families in the middle who maybe have private insurance," said Bane, "but those copays just add up over time and become very financially prohibitive to seeking the services."

And when the short-staffed providers burn out and leave, the process starts all over again.

So, they say, the situation is rough, but what can be done? Bane says local investment can help. In 2020, Winnebago County voters approved a half-cent sales tax to fund mental health services. So far, more than $20 million has been distributed over 40 providers.

She says that’s helped reach more who need services, but they haven’t completely met the need yet. They still need to help grow the mental health workforce. Bane says Alignment Rockford is working to bring a universal newborn support initiative to Winnebago, which would provide a home visit to every parent with a baby in the county.

Lou Ann Hayes says they’re trying to distribute QR codes that can send parents to a list of all mental and behavioral health resources in the area. They’re also encouraging people to call 2-1-1 which can help connect them to mental health services.

Hayes says Birth to Five Illinois is also working on an action plan over the next few months with even more concrete ideas to improve mental and behavioral health access.

For the parents of these kids, it can't come soon enough.