Just a few years ago, Andrea Lee was raising two teenagers with persistent mental-health issues. With the prospect of college and independent adult life looming on the horizon, she and her husband felt overwhelmed.
“My daughter was thinking she was college bound,” Lee said. “My son’s illness impacts him on a much higher level, so we were investigating other options.” Lee was also concerned about health-insurance coverage and job opportunities that would be available for her children once they became legal adults. “I had two really diverse kids, and a lot of questions.”
Though she had done her research, consulting a host of health care professionals and educators, Lee still felt like something was missing: a resource that addressed — in a clear and concise manner — her concerns about her children’s lives as they transitioned to young adulthood.
“There just wasn’t anything out there,” she said. “It felt like there was a real need that could be filled.”
Just as her concerns for her children’s future ramped up, Lee learned about a unique job opportunity. The Minnesota chapter of the National Alliance on Mental Illness (NAMI-MN) had received a grant from the Medica Foundation to produce an informational booklet for parents titled “Transitions: Supporting Your Young Adult With a Mental Illness.” NAMI staff was looking for someone to take on the project.
“I thought,” Lee recalled, “that this was an opportunity for me to do the research and share what I found out with other parents in the same situation. I’d been trying to figure all that stuff out myself anyway, so for me to have this job was really, really perfect.”
One of a collection
“Transitions” joins a collection of some 22 informational booklets produced by NAMI-MN since the early 2000s. Other topics include “Criminal Justice: Advocating for an Adult with a Mental Illness,” and “Understanding Data Privacy: Rules and Resources for Obtaining Mental Health Care Information.”
Matt Burdick, NAMI-MN’s public policy director, explained that the agency began producing the guides not long after Sue Abderholden became the organization’s executive director. The first booklet was a guide to the Civil Commitment Act.
“Back then, NAMI had a very small staff,” Burdick said. The booklets were first developed, he explained, in response to calls the agency was getting on their help line. Many of the calls were about complicated legal matters, and NAMI-MN staff, though they had the knowledge, felt overwhelmed by the need.
“We didn’t have enough time to help walk everyone through the system,” Burdick said. “We looked around and saw that there wasn’t anything in writing out there that addressed this need, so we thought we would need to create resources for folks ourselves.”
While the booklets represent only a fraction of the services NAMI-MN provides, they remain a key part of fulfilling the organization’s mission. “Creating the resource guides is foundational to the work we do,” Burdick said. “We take 4,000 calls each year. We want to help all of these people in the best way possible. Having tools like these booklets that we can provide to people helps us get the most mileage out of our work.”
NAMI-MN stocks a full rack of the booklets by the front door of its St. Paul office. The booklets are mailed to people who call with questions, and they are also distributed to therapists, teachers, school counselors and physicians, who pass them out to their clients.
Lesley Ernst is a middle-school special-education teacher at Upper Mississippi Academy, a charter school based at Fort Snelling. Last year, when she worked as a special-education teacher at Main Street School of Performing Arts in Hopkins, she distributed the “Transitions” booklets to families.
“We started handing the books out at our meetings for teenagers who were getting ready to graduate and needed to know what supports were available for them as they moved on,” Ernst said. “This point of life is really scary for parents of kids with mental-health issues. They don’t want to send them out into the world and not know what supports are out there, and these booklets explain the options it a really clear way.”
While the booklets are also available on the NAMI-MN website in printable PDF form, Ernst appreciated having a hard copy that she could hand to parents and kids.
“A family in crisis wants to know what to do and who to call,” she said. “They get a lot of runaround. That’s the way the system is. To have that brochure in their hands feels reassuring. It’s a real valuable resource that they can use right away.”
The mental health and addiction unit at HealthEast St. Joseph hospital in St. Paul stocks two racks of the NAMI-MN booklets. Marilyn Galloway, mental health and addiction outpatient services administrative secretary, said that she and her colleagues appreciate the brochures’ fact-based approach explaining key issues of concern to individuals and families facing mental illness.
Galloway said that having the facts in hand — in the form of a booklet — provides some patients facing a serious health crisis with a feeling of security.
“Sometimes when the social worker or doctor is in the room with a patient and his or her family, family members might not be listening too closely because they are feeling overwhelmed by the situation at hand,” she said. “On the way out of the clinic they’ll often stop by the rack and pick up a booklet. It’s a relief.”
The idea that a booklet might give stressed family members a feeling of relief is exactly what Lee, now NAMI-MN’s director of youth programming, was hoping for when she wrote the “Transitions” booklet.
“When I was working on that project, I was thinking of everything I needed to know for my own kids,” Lee said. “I wrote the booklet with parents in mind. It’s a tough time when your kids are that age, but I wanted to provide knowledge — and a glimmer of hope for the future.”