Beginning in 1977, several mothers, each with a son with schizophrenia, met to discuss the challenges they shared raising a child with serious mental illness. These mothers assembled a group of family members and friends of persons with mental illness who shared similar concerns, forming the Alliance for the Mentally Ill. This name was chosen partly because of its beautiful acronym, AMI, which means “friend” in French. AMI was incorporated as a 501(c)(3) not-for-profit corporation in November 1977, with Bev Young serving as the organization’s first board president.
In September 1979, with the assistance of Roger Williams from University of Wisconsin–Extension (UW–Extension), AMI Dane County organized a national conference at the Wisconsin Center in Madison. The conference was titled “Advocacy for Persons with Chronic Mental Illness: Building a Nationwide Network.” Sponsors included UW–Extension Mental Health, UW–Extension Health Policy Education, and the Dane County Alliance for the Mentally Ill.
The organizers hoped for as many as 50 people, but, amazingly, 284 representatives from 59 groups (representing 29 states) attended—among them were mental health professionals, including Dr. Herbert Pardes, then director of the National Institute of Mental Health. By the end of the conference, the National Alliance on Mental Illness (NAMI) was formed. Today, NAMI is based in Arlington, Virginia, and has grown significantly with 600 local affiliates and 48 state affiliates.
“These trailblazers, Harriet Shetler, Bev Young, and Nancy Abraham, changed the mental-health landscape through tireless dedication,” says Anna Moffit, executive director. “NAMI Dane County’s legacy continues to drive the work done today in Dane County. … Our mission is to provide education, support, and advocacy for people affected by mental illness in Dane County as well as to eliminate the stigma surrounding mental illness to ensure that people get the support and information they need. We rely on a vast network of volunteers with lived experience to implement our education programs, community presentations, and support groups. Peer support is a foundational piece within our model of support for individuals impacted by a mental illness.”
During the pandemic, NAMI Dane County needed to quickly pivot to online programming. Knowing that individuals living with a mental illness would experience greater challenges with the isolation and anxiety, the staff worked quickly to secure technology infrastructure and train facilitators. In just a few weeks, they were running at capacity, and even expanded the number of their support groups.
According to Adult Program Coordinator Celeste Florentin, the virtual format has led to greater access to programming due to the removal of barriers like childcare and transportation. “Thankfully, our facilitators and educators have really stepped up to meet the community’s needs. We are definitely seeing a greater need for support for children and youth as well as caregivers of adult children.”
NAMI Dane County provides a wide variety of services at no cost to participants. One of their most popular services is weekly support groups. Each group is targeted to a specific demographic group in order to ensure that each group is culturally responsive and safe. These include young adults; bipolar/depression; women’s anxiety and depression; family/caregivers; and, most recently, a transgender support group in partnership with Madison Area Transgender Association. All of the support groups are facilitated by individuals with lived experience and focus on a trauma-informed and strength-based approach.
One of the exciting initiatives is a pilot of youth support groups in partnership with the Madison Metropolitan School District. Last year, NAMI Dane County staff provided several area high schools with numerous school presentations, which were very well received by parents, students, and staff. Based on these outcomes, a part-time youth coordinator was hired to create a comprehensive curriculum to help youth better understand mental illness, develop coping skills, build connections, and increase resiliency and self-efficacy. The youth support group pilot is in collaboration with two University of Wisconsin doctoral students. Similar to its other services, this effort is being coordinated by a variety of community stakeholders and volunteers.
This past year has also been filled with a myriad of community presentations, as many organizations and businesses identified the need for greater mental-health support and education due to the COVID-19 pandemic. Typically, presentations are centered around creating a better understanding of mental illness, sharing community resources, and suicide prevention; however, presentations have been modified to provide other information as well. In 2020, NAMI Dane County reached over 3,500 individuals in Dane and other communities.
Additionally, NAMI Dane County contracts with Dane County to provide Crisis Intervention Team (CIT) and Crisis Intervention Partners (CIP) training for law enforcement and first responders. This has been the busiest year yet, with nine trainings taking place throughout Dane County. The training helps law enforcement and first responders better understand how to support someone experiencing a mental-health crisis, to develop verbal de-escalation skills, and to be able to utilize self-care in regards to their own mental wellness. While training law enforcement to be better equipped to support individuals living with a mental illness, NAMI Dane County is also seeking opportunities and advocating for policies that decriminalize mental illness.
“If someone has a heart attack, we send an ambulance,” says Anna. “However, if someone has a mental-health crisis, we send a squad car. This has to change.” Beginning in September 2021, the City of Madison will be piloting the CARES (Community Alternative Response Emergency Services) team, which will consist of a paramedic and a social worker. This team will be able to do proactive outreach and respond to behavioral health calls received via dispatch. This model has been extremely successful in diverting and deflecting individuals with behavioral health needs away from our jails and prisons.
NAMI originated in Madison, Wisconsin, decades ago and has since benefited countless families across the country. Today, the work of NAMI Dane County continues to be critical in improving the lives of individuals impacted by mental illness in our communities.
Anna Moffit is the executive director of NAMI Dane County. namidanecounty.org .