A groundbreaking program for kids with behavioral health needs folded in Dane County. The lasting effects for families are devastating.

MADISON – In one of the last happy moments Jennie Watters shared with her teenage son, he stormed off after one of their near-daily arguments, then returned home 20 minutes later, carrying a half sheet cake from the supermarket.

It was such an absurd response to their argument that they burst into laughter and let the argument dissipate over forkfuls of cake.

That was about a year ago.

At the time, Watters, 41, believed her son was turning a corner. Although their arguments boiled over at times, he was learning key coping strategies through a Dane County program called Children Come First.

One of only two programs of its kind in the state, Children Come First focused on community-based support, which helped young people with emotional disturbance disorder by working with specialists at home, outside a hospital. The only other county program is Wraparound Milwaukee.

Watters' son was assigned a service facilitator with whom he grew close, started attending various summer trips filled with activities, and received targeted, trauma-informed therapy. Watters benefited too from respite care, which allowed her to take small breaks from worrying over him.

Watters received a letter in January 2023 that would upend the progress she'd been seeing. Children Come First was coming to an end due to a shift in federal funding.

"I just remember thinking how devastating it was — not just for me, but so many other children. These are kids who have hospital stays, may or may not be involved with things like the juvenile justice program, all that kind of stuff," Watters said. "When the program ended, it really left a big gap in intensive services."

More than 70 children and their families in Dane County were left scrambling to find comparable services. And while 50 youth in Children Come First ended up finding placement in Dane County's Comprehensive Community Services, according to a spokesperson from Dane County Health Services, more than 20 families fell through the cracks.

Watters couldn't have predicted just how far she'd fall.

Program vastly reduced hospitalizations, costs

Children Come First was one of the first so-called wraparounds of its kind in the country, according to Scott Strong, executive director of Rise, the Dane County-based nonprofit that oversaw it.

Wraparound care focuses on working with children and their families on their terms, based on their specific behavioral health needs, and is seen by many mental health specialists as a more effective and healthy alternative to long-term hospitalization.

Established in 2000, Children Come First started with a mission to reduce or eliminate the number of children being hospitalized for behavioral health conditions.

It's part of the mindset of deinstitutionalization, a process with origins in the Civil Rights movement. It pushed society away from the idea that people with mental illness should languish in hospital care. Instead, it builds on a different, more humane ethos: people with mental illness can live and heal in their familiar communities while gaining access to treatment and therapy services.

In the 1990s, Strong saw there was a desire to replicate the movement in children's hospitals.

"There was really a push for community supports, these more natural supports that can surround the family so they don't just rely on a formal system of services to support them," Strong said.

Before Children Come First, Dane County psychiatric hospitals in the early 1990s had an average of 125 children as residential patients on a daily basis, Strong said. But after more than 20 years of Children Come First programming, the average was closer to 15.

"You can see the impact that this program had on shifting the thought that children need to be in residential care or corrections or psychiatric hospitalization. We can provide a level of care that's actually in the community," Strong said. "We've developed a system — and a mindset — that really helps support these children in a way that has led to better success and a huge cost savings."

The cost-savings didn't just benefit families. It also benefited the county and the state. Residential treatment, which comes out of a county's general purpose revenue (GPR), is expensive. As an example, admitting a child to Winnebago Mental Health Institute costs the county more than $1,300 per da y.

Federal funding through Medicaid was able to ease the financial burdens at the county level. But once Medicaid was no longer putting money into wraparound care, things fell apart quickly for Children Come First.

Only Wraparound Milwaukee was able to survive the funding cut.

Wraparound Milwaukee has operated for 29 years. On average, it serves about 1,300 youths and their families, said Brian McBride, its director. He said the administrative and fiscal changes that effectively shuttered Children Come First in Dane County also had a dramatic impact on how Wraparound Milwaukee has been able to operate.

Although Wraparound Milwaukee made its funding streams work, McBride feels the state lost an integral service with Children Come First. And it's made McBride even more vigilant about holding on.

"The loss of Children Come First is an end of an era in a lot of ways," McBride said. "We have to be careful that things don't revert back to how things were many, many years ago."

Madison woman's nephew 'wouldn't have made it'

Erin Olson doesn't know what the fate of her nephew would have been without Children Come First. Olson got custody of her nephew when he was 2 years old, and even then, he exhibited behavioral health challenges.

"Life with (my nephew) was up and down because the behavior issues never really stopped," said Olson, now 42. "As a teenager, he was running away a lot. He was pretty violent at school when he even went, so he was always having some difficulties."

Then, as with Watters' son, COVID hit and worsened his behavior. During remote learning, her nephew would have to accompany Olson to work. But that proved unsustainable: He'd frequently run away while Olson busied herself at the office.

She'd eventually learn that her nephew was finding his way into more unsavory circles. It worried Olson so much she moved them across town. At 14, her nephew was stealing her car, her valuables, anything he could. He'd break down doors in fits of rage. Olson, like Watters, couldn't rest.

When her nephew's school recommended Children Come First, Olson wasn't sure it would help. She'd attempted to enroll her nephew in the program when he was 7, but complications with insurance prevented him from receiving necessary neuropsychological testing. She decided to give it a second shot.

Children Come First set him up with therapists and a case manager. Together, they helped Olson get him into the short-term residential treatment program Norris Adolescent Center in Mukwonago that would forever alter the path her nephew was careening toward.

"I'd tried everything I possibly could. He just was getting worse and worse," Olson said, her voice cracking with emotion. "And if it wasn't for Children Come First helping, he wouldn't have made it. He'd be in jail."

After exiting his treatment program, Children Come First arranged a new therapist and transitioned him to Comprehensive Community Services, which helped him with outpatient treatment and stabilization. That program also arranged family therapy for Olson and her nephew, which helped him work out the roots of his feelings and mended some of the deep factures in their relationship.

"That was huge for us. That was our breakthrough," Olson said.

As of this spring, Olson's nephew earned his high school diploma, has a steady job and is taking on adult responsibilities. Children Come First helped her nephew understand the deep-seated trauma of being abandoned by his parents at a young age and gave language to some of his other struggles too.

"We were in a very, very bad place and they helped get what we needed to turn things around. Well, what about those families that don't have that available anymore?" Olson said.

Lives hang in the balance following Children Come First closure

Watters never had to consider how much it rained in May until she lost her home and had to resort to one of Dane County's homeless campsites. No matter how much she'd ring out her clothes, they never felt dry.

Children Come First had been an important program for Watters, not just for its mental health treatment services for her son, but for the funding opportunities it allowed Watters, who is disabled and unable to work.

When the program folded, so did the progress her son had been making. She couldn't keep up with the bills. With some of the last of her money, she got her son an emotional support dog named Persia, but it's all but become hers. Now, Persia holds Watters together.

She had no choice but to have her son move in with her ex-husband, and the saga has left her at Token Creek, assessing storm damage and counting the days before she and her pup have to move again.

In the short period she corresponded with the Journal Sentinel, Watters found herself struggling for stability.

"When you lose access to amazing programs like this, it really leaves people in a position where they can't go up," Watters said. "And if you can't go up, where do you go?"

That's a question that haunts Strong as well.

Strong knows the program worked. He's seen children like Olson's nephew find a steady path through their treatment and come to a better understanding of their trauma and how they process that trauma.

Strong knows the costs are high, not just the $10,000 to $13,000 per month per child in residential treatment, but the longer toll, a toll capable of rupturing whole families.

Not every managed care facility is created equal, Strong said, something he wishes the federal government would realize.

"We have a system that really works together and understands the need, understands why it's important to keep children in the community versus in residential care," Strong said. "So why would we get rid of something that works?"

Natalie Eilbert covers mental health issues for the Milwaukee Journal Sentinel. She welcomes story tips and feedback. You can reach her at neilbert@gannett.com or view her Twitter profile at @natalie_eilbert .

This article originally appeared on Green Bay Press-Gazette: A groundbreaking program for kids with behavioral health needs folded in Dane County. The lasting effects for families are devastating.