Lisa Labuz: When children from low income families are in extreme emotional distress and threaten to harm themselves or others, Illinois sends a paramedic of sorts. It's through a state program called SASS. And it can be a godsend, especially as the mental health crisis for children reached critical levels during the pandemic. But a WBEZ investigation shows this safety net has far too many holes. In the first of three stories this week, WBEZ’s Sarah Karp brings us to the front lines of this crisis. And a warning for listeners. This story contains language about suicide.

Sarah Karp: It’s after 4 p.m. and Crisis Worker Randy Sadler is in the back room of an old office building. He’s about to do a mental health assessment of a 12 year old boy in distress.

Randy Sadler: I'm about to go grab an assessment. I'll get an interpreter on the phone, okay?

Sarah Karp: Usually Sadler is able to lock his kind brown eyes with the child in front of him. Usually, he can tell their mom, he knows it is difficult to see their baby in such a dark place. But Sadler’s office is on the South Side and this boy is far away on the West Side, sitting in a school counselor’s office. The quickest way to reach the boy is over the phone. So, Sadler dials in an interpreter for the mother who only speaks Spanish and quickly gets to the heart of why he was called in.

Randy Sadler: Did you say that you wanted to commit suicide by grabbing a knife while your parents were asleep?

Sarah Karp: In his small high pitched voice, he says yes. He’s only 12. Immediately he starts crying. The counselor tells Sadler the boy said he’s getting sadder and sadder, and quote "Sometimes I want to get out of this world and never get back." Sadler knows what he has to do.

Randy Sadler: Mr. Interpreter, can you tell my mom my recommendation is going to be for inpatient psychiatric treatment.

Sarah Karp: This is a life-or-death situation and it is Sadler’s job to get this child help. He works for Ada S. McKinley Community Services. It’s one of more than two dozen organizations that work with the state to do mental health assessments for low-income children in crisis and then get them into inpatient or outpatient treatment. In the decade Sadler’s been doing it, it has always been difficult. Mental health services for children are lacking, especially in poor communities where health disparities run deep. But now, with the pandemic, the need for mental health support is so great and all systems, from schools to clinics are taxed. On this fall day, the limits of what Sadler can provide loom large. Earlier in the day, as we drove from one assessment to another, Sadler said he tries his best not to recommend hospitalization. It’s tough on a family and beds are scarce.

Randy Sadler: So even when it gets there, I'm sending these people out of their neighborhoods into total foreign areas because it just doesn't exist.

Sarah Karp: This is a factor with the 12 year old in the West Side School. When mother heres her son may have to go to a hospital far away and he could be there for as long as 14 days. She gets scared. She says, no. She doesn't want him to go. As she says this, the boy could be heard sobbing in the background and the mom was crying also. Eventually, the counselor asked if at the very least they should recommend that the mom remove the knives from the home.

Randy Sadler: And not only lock up the knives, but she needs to remove any and all sharp objects, anything that he could get his hands on to harm himself.

Sarah Karp: When Sadler hangs up the phone, he’s required to immediately call child protective services. If they feel it is necessary, they can take the boy into state custody to get him to a hospital to make sure he’s safe. But Sadler is obviously upset by what happened. Yet, he can’t linger on that case. His phone buzzes all day long with assessments that must be done. Sadler spent that fall morning at a school on the South West side.

Randy Sadler: I'm here from SASS.

Sarah Karp: The school counselor leads Sadler into a sparse conference room where his limits will once again come into play. Sadler situates himself across the table from a thin boy in an oversized white t-shirt. He looks at some paperwork and then asks straightforward questions.

Randy Sadler: It says that you're feeling anxious.

Boy: Mhm.

Randy Sadler: Can you tell me why?

Sarah Karp: The boy says he feels overwhelmed by daily routines and panicked about his future. Sadler listens intently. He learns that the boy doesn’t have an actual plan on how or when he would hurt himself. He decides the boy will be okay with regular therapy. But he sighs.

Randy Sadler: There's a waiting list for counseling. And so...

Sarah Karp: You can hear the counselor saying, I know the waiting list for therapy can be anywhere between four and six months. And Sadler is frank. It's going to be on the mom to get him into treatment.

Randy Sadler: The squeaky wheel gets the oil.

Sarah Karp: The squeaky wheel gets the oil, he says. The counselor tells the mother she is going to have to follow up and follow up. The mother who came to school unsure how of to help her son, begging for anything, leaves with a sheet of paper with phone numbers on it and a tall task. Schools, clinics, community organizations have all taken notice of the limits of the SASS program. They say too often they have to wait hours for crisis workers and then all too often they’re met with referrals for counseling that have long waiting lists or aren’t taking any new patients. Jose Viruet is with Erie Family Health, which has clinics throughout the city. He says often people criticize SASS, but really, they are part of a broken system.

Jose Viruet: They do the best they can. I have to say that. I think they're understaffed and the demand is so high that oftentimes people confused those variables with their encounters with the patients.

Sarah Karp: Sadler imagines all day how things could be different. He has a long list among them:

Randy Sadler: Like, it would be beautiful to be able to. It's Thursday, let's have this kid assigned to a therapist in the next week or so.

Sarah Karp: The state knows things are not good and launched a program that's supposed to increase intensive mental health services for children in Illinois. And yet, at the moment anyway, Sadler sums it up like this.

Randy Sadler: The resources just aren't there, but it's what we live in. And so we deal with that.

Sarah Karp: Sarah Karp, WBEZ news.

Lisa Labuz: WBEZ is sharing an investigation into a state program that is meant to link Illinois’ most vulnerable children with treatment during a mental health crisis. Providers say this program, known as SASS, is sorely needed, but under-funded and struggling. Today, Kristen Schorsch explains why children are criss-crossing Illinois competing for the same small pool of mental health resources. That’s even as the demand for help intensifies. And a warning for listeners, this story contains language about suicide.

Kristen Schorsch: Last year a teenage boy in mental health crisis showed up in the emergency department eight times at St. Bernard Hospital on Chicago’s South Side. They were never able to transfer him to a hospital that has psychiatric services for children. St. Bernard doesn’t offer that.

Ashley Magda: He’s not getting placed. So then he’s not getting care, and so we have a clear miss here.

Kristen Schorsch: Dr. Ashley Magda is a senior physician in the ER.

Ashley Magda: What are we going to do to address this because just coming back to the ER is obviously not solving the issue.

Kristen Schorsch: The boy lingered because he was in the foster care system without a stable home. There might not be a place to send him back to, if he gets a psych bed. These are the hardest kids to place. St. Bernard has other kids who keep coming back and get labeled. Their sometimes violent behavior is well known. It’s hard to place them, too.

Ashley Magda: Some days it has a big emotional toll, and you just think about certain cases. How are we supposed to expect them to go succeed in life if we're not giving them the foundation that we know they need.

Kristen Schorsch: Magda has worked at St. Bernard her entire career, a quiet strong presence in the hospital. She’s a mother too, and is an advocate for these children. At least once a week a child in mental health crisis shows up at St. Bernard, in one of the city’s poorest communities. Staff call a state hotline to get help from what’s called the SASS program. This is supposed to be a gateway for low-income children to get immediate help. Then these children wait days — sometimes weeks — for a bed to open up at another hospital, if that’s what they need. Joy Greer oversees nurses in the ER.

Joy Greer: We go buy magazines and coloring books, and buy them what they want, really cater to these kids. And that is not treatment. That is pacification.

Kristen Schorsch: The children tend to linger outside their exam rooms because there is little to do. There aren’t even TVs to watch. They see what’s happening around them. The patients who are shot, in labor, or having heart attacks. The cops who are guarding other patients’ doors. Here’s what’s unfolding beyond the walls of St. Bernard that helps explain why kids are stuck. WBEZ spent months interviewing people across the state and obtaining records. We found that SASS is buckling under the weight of overwhelming mental health needs without enough resources. SASS was created to connect low-income kids who have Medicaid health insurance, or none at all with mental health treatment. Children who have private insurance typically have a leg up. More doctors are willing to treat them because private insurance tends to pay best. But there are not a lot of places to send children who need treatment, whether that’s to a hospital or for outpatient therapy. Hence the bottleneck in St. Bernard’s ER. Here’s Magda again.

Ashley Magda: We’ll call places that have open beds and they’ll just say, they’re not a good fit. And it’s like, I mean, what are we supposed to do with that.

Kristen Schorsch: Children across Illinois are chasing the same dearth of resources. Take hospital beds for the youngest patients having suicidal thoughts. WBEZ has found that in some cases, SASS providers send children across the state, sometimes across the Midwest.

Kelsey Di Pirro: Wisconsin, Iowa, Missouri, Indiana, Tennessee on occasion.

Kristen Schorsch: Kelsey Di Pirro with the nonprofit C4 in Chicago lists where she’s tried to get children into psych beds.

Kelsey Di Pirro: If we’re going from Stroger to Missouri that’s a very long ambulance ride. And then once they get there, there’s no ambulance ride back.

Kristen Schorsch: Only around 15% of all hospitals in Illinois have psych beds for children. And not all take a lot of Medicaid patients. The entire South Side of Chicago and rural areas of the state are psych bed deserts. Have a few stitches or autism? That limits childrens’ options. Melissa Coleman is a veteran SASS provider in the Chicago area. She describes phone calls as she looks for treatment for low-income children.

Melissa Coleman: It does not make me feel good when someone asks me what the race of the person, because does it matter? And some hospitals will ask you what the person’s ZIP code is. Why? I don’t even understand that part.

Kristen Schorsch: And they ask what kind of Medicaid insurance the child has, which really ruffles Coleman.

Melissa Coleman: You either take it all or you don’t take anything, because that limits the families from getting the help that they need and that’s wrong.

Kristen Schorsch: Our investigation reveals there’s little coordination to prevent providers from chasing the same beds. And there’s no window into how many beds are actually available, or wait times. The outpatient world has a lot of the same problems. At Erie Family Health, Jose Viruet and Sweet Barren try to make it easier for patients. Inside a small room at a North Side clinic, Viruet walks me through a database.

Jose Virtuet: Everything is broken down by specific region, so as you see here it says Lake County, Evanston...

Kristen Schorsch: Viruet is Erie’s clinical director of behavioral health. He opens a tab and shows even more options, agency names, the health insurance they take, their wait list. When patients need a referral, Barren doesn’t just give places to call. She already knows there’s an opening.

Sweet Barren: It’s unfortunate that this stuff is not out there already, and that it’s not accessible. But I try not to think about that part. Just because it’ll make you cry.

Kristen Schorsch: A school counselor told WBEZ she calls all the outpatient places students are referred to by SASS. That’s how she knows there are no spots. Many therapists don’t take insurance at all. And given the workforce shortage, some therapists who do take Medicaid are so full their wait lists are closed. Back at St. Bernard, Magda wonders what’s at stake if nothing changes.

Ashley Magda: When will the government finally realize that if we don’t help these kids as kids, we’re just going to have a bunch of very troubled adults.

Kristen Schorsch: There are signs of hope. The state is investing big money to put more intensive mental health services in communities, and has a new blueprint to revamp mental health care for children overall. Child welfare expert Dana Weiner led the effort. Her plan includes creating a portal for families to search for treatment. Weiner also wants providers that do business with the state to eventually be transparent about whether they have beds or appointments available.

Dana Weiner: Right now we just know where the providers are. It’s not enough. You’ve got to start somewhere. I’m just cultivating a vision for how do we take the stuff we have and some new technology and some new requirements to build the system that we need.

Kristen Schorsch: Weiner wants to strengthen the safety and communities. So Children don't have to chase the same small pool of hospital beds. Kristen Schorsch, WBEZ news

Mary Dixon: Reporters Sarah Karp and Susie An contributed to this story. If you or a loved one are having thoughts of suicide, call 988, the crisis lifeline.

Lisa Labuz: WBEZ is focusing on a state program that is supposed to connect low-income children experiencing a mental health crisis with treatment. In our investigation, we found that thousands of children cycle through the program repeatedly each year, and many are failing to get the help they need. Today, we bring you one mother’s experience, and explain why mental health services are so hard to get. A warning for listeners this story contains language about suicide. WBEZ’s Sarah Karp starts us off.

Sarah Karp: The call came on a Friday afternoon. Her son’s high school was on the other line telling her that he was in distress.

Melina: And he started crying, and he started saying the same thing to the people over there. That he didn’t have a point in life. He's a failure.

Sarah Karp: Melina was shaken but not surprised. We are not using her last name to protect her son’s identity. He had said some of the same things on social media and, though he had denied it, Melina knew in her bones something was wrong. He wasn’t eating. He was letting his appearance go. He wasn’t playing his beloved guitar. The school told her that there was a state program that was supposed to help connect him with treatment quickly, but this was easier said than done. She soon learned it could take a state crisis worker hours to assess her son. And even after that there might not be a place for him to go. This is what the school told her.

Melina: It's going to take a long time, and he’s going to be in the school all day and maybe we're not going to find a bed in some of the centers, so he is going to end up in hospital.

Sarah Karp: So Melina asked what could she do? The school suggested she pick up her son and take him to the nearest psychiatric hospital. It would be harder at that point to turn him away. So they went. The psych hospital was cold and unwelcoming.

Melina: Nobody is talking everybody looks depressed, sad, stressed, worried.

Sarah Karp: By the time her son was evaluated, after waiting five hours, he had shut down. He was no longer as emotional. He was just tired.

Melina: I see my kid coming in five minutes and you make me wait like five hours.

Sarah Karp: Five minutes, that’s how long it seemed the assessment took. And in the end they sent him home, giving Melina a list of numbers she could call to set up outpatient therapy. At the end of the day, she was exhausted and scared.

Melina: They give me the paper but they don't give you, like, what to do what I should do. I mean, he's saying this things. He want to kill himself. Maybe he's not gonna do it. Maybe he's gonna do I don't know, what is happening his mind. He was so low, so low, that we didn’t know how to cheer him up.

Sarah Karp: Melina and her husband told their son he could go to bed, but to keep his door open.Â Next, my colleague Kristen Schorsch helps explain why Melina and her son had so few options.

Kristen Schorsch: When it comes to the extreme end of treatment for kids in crisis, they need to be hospitalized. There aren’t many places to turn. In Illinois, only about 15% of all hospitals have psychiatric beds for children. Much of this comes down to money.

Unknown speaker: So we'll head in here through a consultation, lots of keys in a psychiatric unit.

Kristen Schorsch: I’m at Lurie Children’s Hospital of Chicago, one of the most well known of its kind in the country. A journey to the psychiatric unit helps explain why so many other hospitals are not investing in this service. Dr. Aron Janssen shows me the 12-bed unit. It doesn’t feel like a sterile psych ward. There are bright shades of yellow and green. We come to an empty patient room. He explains that everything in this room is designed to make sure a kid can’t hurt themselves.

Aron Janssen: So for example, you look at this doorknob, there’s no way of fixing anything to the doorknob in order for you to hang oneself, hurt oneself in any significant way. These are some of the hidden costs of psychiatric care.

Kristen Schorsch: This doorknob combined with the door, costs almost $10 thousand. There are so many expensive things psych units need to keep children safe. Chairs filled with sand, so heavy they barely budge so they can’t be used as a weapon. Walls that have to be softer than cement, to cushion the blow of a banging head. An entire patient’s room costs around $1 million dollars to set up, a steep price tag hospitals can’t afford, or don’t want to spend. Lurie actually loses money providing psychiatric care.

Aron Janssen: The time and effort it takes what staffing and with our interventions often are not reimbursed at the same rates that the same other medical care may be. And so it's harder to afford to run these units than it is for a lot of other units.

Kristen Schorsch: At least half the patients are typically low-income and have Medicaid health insurance, which does not cover the cost to treat them. Here’s the ripple effect of having so few hospitals in the state treat children in crisis. Lurie’s unit is pretty much always full.

Aron Janssen: We used to get calls from outpatient providers with direct referral, saying my patient is in distress, I think they would benefit from a hospitalization. Those don’t happen anymore, because we never have the space.

Kristen Schorsch: During the height of the pandemic, the hospital had around 30 patients waiting on other floors to get into the psych unit. Some families just show up in the emergency department as a way to get in the door. There are other reasons hospitals shy away from this level of care. These units are hard to staff. Hospitals spend millions of dollars updating units every few years to make them safer for suicidal youth. And they fear that children will stay longer than needed. Some of Lurie’s patients have been stuck for more than three months waiting for a spot in a residential facility. Dr. Michael Naylor opened UI Health’s adolescent psychiatric unit about 25 years ago. It’s one of the few in Chicago.

Michael Naylor: If this is going to be solved, it's going to need to be solved not on a hospital by hospital basis because their decisions are going to be made on the basis of finances.

Kristen Schorsch: Hospitals make money on surgeries, for example, not on psych. Naylor says the state needs to intervene before more psych beds for children vanish.Â There are some hospitals bucking the trend. UnityPoint Health plans to open a nearly $30 million mental health center for children in downstate West Peoria next year with 44 beds. There’s a severe drought of this treatment in the area. Here’s Janssen again from Lurie.

Aron Janssen: We need other places to step up and say, these kids matter. This treatment is important, and no matter what the investment is, we need to make it.

Kristen Schorsch: As it is now, far too many families are left on their own to find care for their kids. Melina, the mother from earlier, left the hospital with a list of places to call to get therapy for her son. So many had wait lists. She wound up finding help for him on her own. He seems to be doing better, though Melina wonders if he needs more intensive therapy.

Melina: He’s fighting, he’s fighting, and we're fighting with him too.

Kristen Schorsch: Kristen Schorsch.

Sarah Karp: Sarah Karp, WBEZ News.

Lisa Labuz: If you or a loved one are having thoughts of suicide call 988, the crisis and suicide lifeline.

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