From Awareness to Action, with Voices of Lived Experience

Those changes in language reflect a deeper shift in the Collective Impact process over the past two years, a period in which the network has moved from trauma awareness toward resilience-building. In that time, OCMH has grown the size and diversity of the network, conducted workshops that go beyond “ACEs 101,” published regular data on children’s mental health and bolstered the Lived Experience Partner (LEP) program to become a model across the state.

The Collective Impact network now includes 150 individuals from a broad range of sectors—health and children’s services, education, corrections, mental health, advocacy groups, health systems, and lived experience. In addition to the state departments, organizations with representatives at the table include the Wisconsin Chapter of the American Academy of Pediatrics, United Way of Wisconsin, Children’s Health Alliance, Rogers Behavioral Health and Disability Rights Wisconsin.

The Collective Impact Council meets quarterly; four teams, including ones focused on access, resilience and trauma-informed care, meet monthly, and each is co-chaired by a professional and an LEP.

“We’re starting to move toward [asking]: What are positive childhood experiences, and how do we help children have the skills to be resilient, to overcome what might have happened to them in the past?” says Hall.

Recently, the state’s Department of Health Services gathered all the state’s initiatives regarding trauma-informed care into one site of data, resources and tools called Resilient Wisconsin. Karen Katz, operations lead for OCMH, is involved in that effort.

During the MARC grant period, OCMH initially wanted to bring trauma-awareness to the workplace through use of a mindfulness app; they hoped to engage the business community as an active partner in the work.

That idea proved difficult to enact— “it was an initiative that businesses just weren’t ready for and couldn’t see a return-on-investment for,” says Hall—but interest in trauma and resilience has exploded among other sectors.

In the past year, the work group on trauma-informed care hosted workshops on topics including vicarious trauma and environmental safety, held (pre-COVID) in both live and virtual formats. In November 2018, those workshops happened in seven locations, drawing a total of 200 people; by February 2020, there were 31 locations with nearly 1,000 people registered.

“The goal is to educate the mental health and social services workforce and build momentum in local communities,” says Katz. “The workforce is hungry for this information.”

Wisconsin was a leader, among MARC communities and similar networks nationwide, in incorporating the voices of those with lived experience and in creating a staff position to facilitate that work.

The LEPs—currently seven youth aged 16-26 and seventeen adults who are parents or caregivers, receive a per-hour stipend for their time attending meetings, along with mileage reimbursement and a meal allowance. “That shows we’re serious, that we value their perspective; they are additional experts around the table,” says Andrea Turtenwald, Family Relations Coordinator, who recruits, trains and guides the LEPs with pre- and post-meeting debriefings, helping them learn how their personal stories illuminate shortfalls in children’s mental health services and how to advocate effectively for change.

Last year, two LEPs, a youth and a parent, shared stories that led to a new, tangible project—a wallet-sized card on which young people can write down their triggers for a mental health crisis along with actions or words that might help them calm down.

The Youth Mental Health Crisis Plan Card came directly from an experience LEP Nick Krisko, 21, had a few years earlier, when he tried to explain his phobia of hospitals to an emergency room physician who dismissed his anxieties. Krisko had a debilitating panic attack and left the hospital without treatment.

“Teenagers, especially, often get that eye-roll when trying to advocate for themselves,” he says. His card, which advises health care practitioners to avoid talking about procedures or showing him medical instruments, “is a preventive measure. I grab it whenever I leave the house.”

Last fall, the Collective Impact network launched the card at a high school in northern Wisconsin, with enthusiastic response; it’s also printable from the OCMH website. It’s a clear example, Katz says, of how people with lived experience can shape the conversation and its outcomes.

The OCMH has become a source of valuable data about children’s mental health across the state, publishing fact sheets on specific topics—bullying prevention or healthy use of screen time—along with an annual report that includes measures of child health and well-being: e-cigarette use and exposure to racism along with “flourishing behaviors.”

During the pandemic, OCMH has also published Mental Wellness during COVID-19 newsletters, each containing an interview with a mental health professional, a first-person account from an LEP about how their family is surviving quarantine and a stunning photograph—in one issue, a star-sequined Utah sky—to foster relaxation.

Before, during and after the coronavirus crisis, Katz and Hall say, their goal remains constant: to keep the Collective Impact Council vital and visible, to boost engagement and to use data and momentum to shape policy at the grass-roots and statewide level.

Before the creation of OCMH, different state departments operated more independently; the Collective Impact Council called for them to learn about one another’s roles and build relationships, Katz says. “Over time, people at the table intentionally engaged with each other, supported each other’s initiatives and braided funding. We call that success. Now we are consciously identifying actions that will bring about greater improvement in the children’s mental health system.”