From Shoestring to Powerhouse: Moving Mental Health Care Forward

When Sue Abderholden took the reins at the Minnesota chapter of the National Alliance on Mental Illness (NAMI) in 2001, the organization ran on duct tape, a few staff, and big hopes.

Two decades later, NAMI MN has become a statewide leader and national model—transforming how mental health is addressed in schools, jails, hospitals, and homes. 

In this candid conversation, Sue reflects on 24 years of advocacy, the power of listening, and the long fight to bring dignity and justice to mental health care. We explore words that wound, policies that uplift, and why she never walked away—even on the hard days. This isn’t just a story about mental health—it’s a masterclass in how lasting change begins: one conversation at a time.

Now looking ahead, Sue shares what’s next, what remains unfinished, and what it means to build something solid—ready for the next person to carry forward with clarity and purpose.

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Chapters

• 0:06 Welcome to Fill to Capacity
• 1:26 From Shoestring to Powerhouse
• 4:54 Advocacy Beyond Nine to Five
• 14:06 The Power of Language
• 23:37 Legislative Victories and Challenges
• 30:10 The Next Chapter: Life After NAMI

Transcript

Pat:

Fill To Capacity where heart grit and irreverent humor collide. A podcast for people too stubborn to quit and too creative not to make a difference.

Pat:

Hi, I'm Pat Benincasa and welcome to Fill To Capacity, Episode 116, "From Shoestring to Powerhouse: Moving Mental Health Care Forward." Now, back in May of 2022, Sue Abderholden joined Fill To Capacity for a powerful episode on Teen Mental Health during COVID, alongside Jodi Nelson of Change Inc. Now today, she comes back not just as a guest, but as a leader, closing one chapter and stepping into the next. And I have to say, when Sue took the reins at NAMI that's the National Alliance on Mental Illness, NAMI Minnesota in 2001, it was a shoestring operation with 2.5 staff members and $160,000 budget. Under her leadership, it grew into a $3 million organization with 37 staff and a national reach. So over 24 years, she's helped pass more than two dozen laws that reshaped how Minnesota approaches mental health in schools, jails, hospitals, and beyond. From ending solitary confinement to expanding early intervention, her impact is systemic and deeply human. Sue's earned honors from Macalester College, NAMI National, and a regular spot on Minnesota physicians list of 100 most influential health care leaders. Okay, I gotta tell you listeners, she's not one for the spotlight. She's a builder, a listener, and a change maker. And today she's here to talk about what it took and what's next. Welcome, Sue. So nice to have you here.

Sue:

Thanks so much, Pat, for inviting me.

Pat:

Oh, my pleasure. So back in 2001, NAMI Minnesota was small, just a few staff, a tight budget. What on earth made you say yes to that job?

Sue:

Well, to be honest, I didn't know it was that bad when I said yes. So, but you know, it was an issue that I cared about definitely. I've had family members who've lived with a mental illness, and so it was the issue I cared about. And it reminded me a lot of my position at ARC of Minnesota for people with developmental disabilities in that you worked with the individual, the family, the providers, and you got to do a little bit of everything. And so I thought, you know, this, this sounds good. This is an organization that fits with my values and I think I can help. And of course, I was very surprised once I started and saw frankly what little infrastructure there was. The computers literally had duct tape. If you wanted to use the internet, you had to unplug the fax. You know, the only other full-time person quit my first day on the job. There was a state conference in like six weeks, and I had no idea what had been done. And, uh, there wasn't really a financial system. So I literally, and I kept it. I have a notebook, where on one side I would write down the deposits on the other side, the checks to make sure I would have enough money in the bank. So it, it needed a lot of work, but I also really loved their mission and felt that we would be able to grow and to make a difference.

Pat:

So I was gonna ask you what kept you going all those years? And I think you're touching on it, it sounds like it's the people?

Sue:

It's the people. I've been just so honored to listen to people's stories, both good and bad, frankly. You know, sitting with people who lost someone to suicide or whose loved one ended up in jail, and just being able to hear their stories and to figure out how can we create change using their stories, how can I help them come to the Capitol to share their stories? And that's really, it's the people that have kept me going all these years.

Pat:

Yeah. Advocacy at this level is not a nine to five job. What did this kind of work really demand from you day to day?

Sue:

I pretty much worked at least six days a week and seven during the session, and it's really what it took. And I know in talking to other state, non-executive directors around the country, they do the same thing. We have a monthly call that we organized ourselves, um, just to provide that support. And they all struggle with that because none of us have enough resources to meet the needs. And so you end up kind of stretching yourself, frankly, quite then.

Pat:

It seems that this is the kind of job that when you go home or at the end of the day, like how do you stop thinking about it? I mean, this is high intensity stuff,

Sue:

So I used to be better about making sure I took a walk five days a week, sometimes short, sometimes long, sometimes on my treadmill, sometimes outside the last year that it's actually been pretty hard to do that. But that was my way, frankly, of relieving stress. So we all have to find some way, frankly, to relieve the stress.

Pat:

Yeah. The bigger, the bigger the challenge, the more it requires self-care.

Sue:

And that can be really tough, frankly, because I still had to course take care of, you know, my family, my house and you know, all of those kinds of things. I do have a wonderful book club that we've been together about 30 years. And so that was something that night was always something that I tried to hold sacred so that I could, I could see my friends and, and engage with them.

Pat:

Do you think that kept you even keeled? Do you think what you're just describing, was that your ballast?

Sue:

It helped. I also honestly developed some very close friends through this work. So, so they also, they understood the problems with the children's mental health system or the adult mental health system. And so it was nice to also be able to talk to people who kind of understood the challenges that frankly we all faced.

Pat:

Yeah. Like soldiers in battle, in the good fight.

Sue:

Yes.

Pat:

I often felt that way. I taught for 30 years. And there's a way that you have a camaraderie with those in the good fight with you that you, you can't explain to other people.

Sue:

No. That that is true. And actually, we are all meeting to go for a long weekend after I retire up to Door County (Wisconsin) as a way to kind of relax and, and get together.

Pat:

Great. Now, when you were on Fill To Capacity in 2022, you said quote, "I always like to say our mental health system isn't broken. It was never built." Do you still...

Sue:

That is, that is my quote and I still stand by it.

Pat:

Do you think it's still true?

Sue:

Our system isn't built, but I will say that we have the foundation in place, uh, and we know what works. We just have to fully fund it. So even today with the discussion about, you know, mental health and, and mass shootings, and they're talking about, you know, how do we build the mental health system? I'm like, we don't come up with any new ideas. We know that School Link works, fully funded, make sure we're in every school in the state of Minnesota, right? We know that respite care works, we know our crisis teams work, but we don't fully fund things. So I, I mean, I think we're in a much better place than we were 24 years ago. Absolutely. We have far more services than we ever had before. And we have them paid, you know, through Medicaid, Minnesota care, and private insurance. They were funded by grants before. So this is, this is really, things have changed. I had a wonderful mentor, uh, back when I worked for ARC, and she said, when you look ahead and see how much work needs to be done, you need to, to look behind you and see how far you've come.

Pat:

Well, that leads to my next question. As we said, NAMI was a tiny operation when you walked in. What do you think the 2001 Sue would say if she walked into NAMI today?

Sue:

Like, wow, <laugh>, you know, there's, there's infrastructure, there's staff, you know, we have systems in place that we didn't have back then. Of course, our funding is much larger and frankly, people know us back then if I said NAMI, people are like, what? Who? And now, you know, not, it's not a hundred percent, but I would say a ton of people do know of nami. The legislature knows nami, the media knows NAMI and, you know, reach out. They reach out all the time for, you know, information or quotes or who else should they talk to. So I think we're much better known. I think there's greater acceptance around mental illness as well. And we have more services.

Pat:

Well, that was where I wanted to go with this question. In terms of public perception about mental illness, it seems in the last 10 years, especially, people are more willing to talk about mental health issues in a way they weren't before. Would you agree with that?

Sue:

Oh, absolutely. I mean, you see, you know what I call famous people, right? Athletes, movie stars, elected officials, so many more people coming forward, CEOs of businesses coming forward and sharing their stories. You know, our own US Senator (Tina) Smith, you know, sharing her story about depression. So we are seeing that. And I would say that actually after COVID, we really saw a huge shift. And I think it's because pretty much everyone during c had a day or more of feeling anxious or depressed about what was going on. And so I think people are more empathetic because it's like, oh, I know what it's like to feel anxious. And to start my heart start beating and starting, you know, and really kind of feeling that, you know, my breath is getting faster and things like that. Or I, I don't even wanna get up in the morning. I don't know what's gonna happen today. I'm scared for my family or myself. And so I think people are more empathetic towards this issue and more willing to talk about it than ever before.

Pat:

Now I wanna shift gears and talk about language. When I taught, I used to tell my students, you are your words. The language we choose reveals how we see the world and ourselves. Now, you spent years digging through the language buried in policies and systems changing how mental illness is described in law. Most people overlook how powerful those words can be, but you didn't. Why does that matter so much to you? What made you laser in on words when so many other people would just look past them?

Sue:

Well, I think if you ask any poet, author, playwright about the power of words, words are powerful. And so I did focus on actually initially, just people, first language. It's not the mentally ill, it's people with mental illness. And mental illness does not defined them. They have other aspects that we need to talk about, whether they're musicians or writers or, great, great food or whatever it might be. But that doesn't define them. The other thing I really kind of went after all these years is our slang words. So I have this exercise that I do on a public awareness presentation, and I ask people to yell out all the slang words for mental illness, psycho nuts, right? Crazy. And they name quite a few of them. And then I ask them, what are the slang words for heart disease or diabetes?

Sue:

We don't have them. We really don't have them. And so why is it that we have slang words for mental illness, but not other illnesses? And you know, it's not about being the word police, but I tell people just for the rest of today, listen to how many times you hear the word crazy and it has an impact. So I want you to think about a young person, maybe 22 years old, maybe hearing voices for the first time or having this serious depressive episode or, uh, their first manic episode, right? They're afraid to tell people. 'cause people are gonna think they're quote unquote crazy. We don't want that. We wanna say, maybe you have a mental illness. Maybe you have symptoms related to an illness that you should go get checked out. And so words absolutely do matter. And, and I think we have to be careful.

Sue:

This last session we made a huge change in the statute, was 89 some pages in the bill. But for all this time, instead of calling in childhood, calling it a mental illness, they called it an "emotional disturbance" or a "serious emotional disturbance." And I really hated those terms because these aren't disturbances, they're illnesses. And I don't know why they thought that maybe parents would rather hear emotional disturbance than a mental illness, but it's not true. And what we also saw is that under special education, we have a category called emotional behavioral disorder, EBD. And so we had parents confusing. They think, oh, my child is in an EBD classroom. That means they have an emotional disturbance. That's a, and they're getting treatment. No, it's not, it's not a diagnosis. So we changed everywhere in the statute where it said "emotional disturbance" or "serious emotional disturbance." We changed it to "mental illness." And I think that's a very important change.

Pat:

That's huge. And I love that you throw that out. Like how many slang words do you have for diabetes? I mean, that was shocking. 'cause when I think about it and any of us, what do we call names at? What do we make slang? And it seems that mental illness was a viable punching bag.

Sue:

Absolutely, absolutely. And again, I'm not trying to be the word police, but I, but I do think words are powerful. And I think when we say those words to describe people, we have plenty of other words. You know, come on, people get your thesarus out. Right? I mean, there's other words to describe things. You know, it's driving me up a wall. You can say that instead of crazy, right? There's lots of other words that we can use instead of words that truly we associate with a mental illness.

Pat:

I think at the heart of slaying and dismissive terms, those terms make the situation easily to either look the other way or dismiss. So if you say somebody, oh, that's crazy, you can dismiss it. So what the language does, it anchors us into what is happening.

Sue:

Well, and there's three words in our mission statement that I think are important, justice, dignity, and respect. And so trying to carry those out means we have to start using language that is respectful of the experience. I think it takes a lot of courage, frankly, to go out into the world when you're hearing voices and they're negative voices, they're never positive, right? I think it takes an incredible amount of determination to get out of bed in the morning when you're struggling with serious depression. You know? So I, I think we have to really start thinking about the experience that people go through. I mean, we had, you know, for many years, for especially moms, you know, when their children had serious mental illness, they needed to go to therapy once a week for 22, 24, 27 weeks. Kids never finished their treatment because parents were losing their jobs. Now, if there was a parent bringing their child to chemo, I actually don't think an employer would push that person or fire them. But it happened with children with mental illnesses all the time. And so again, we have to start treating these illnesses frankly, with respect and understanding the real impact that it has on an individual and their families.

Pat:

Do you think that shift is happening, that mental illness is now on the same par as physical illness? Or are we still working our way towards that?

Sue:

We're not there yet, but we've made progress since right before COVID, we started working with employers around mental health in the workplace. And we, we had a lot of employers last year and, and I think actually because of COVID, we had more and more employers worried about the mental health of their employees. So we saw them wanting to have presentations in the workplace, information in the workplace about mental illnesses and how could we provide support and things like that. So it's changing, but when I think about how private insurance treats mental health, mental illness, it's not the same. Yet when I look at kids in school who might be struggling with their mental health, we're not there yet. Even in the workplace, we're still not there. Employers are better for sure, but we're still not there.

Pat:

It almost seems, if you can say anything good came out of COIVID, and I say that very carefully. It seems that COVID slammed the brakes on everybody's normal life. Everything stopped and all the people that had to stay home and work from home be with their kids at home while the kids were supposed to be online going to school, everything changed. It's almost as if we had a chance to either catch our breath or slow down. We were forced to slow down and live in a new way.

Sue:

I think though it also was a worldwide traumatic experience, and so I think while it could have been a chance to slow down the fear really overrode that. I mean, I can remember being at the State Capitol for our day on the hill that March, the day before everything closed down. And at the time we all thought, well, we got this, we'll be done in June. Right? We've got this. June comes. And it's like, no, we're not done yet. And so I think that uncertainty that we all had to live with, not knowing when it was gonna be over, not knowing how to protect ourselves, not knowing how to protect our loved ones. You know, people ending up in the hospital, not being able to be with them. And actually for some people they were isolated. They were the only ones in their apartment or home. And that wasn't always healthy. And even for some families we're not used to being with our entire family 24 7. And that actually also caused a whole lot of stress for families not being able to get toilet paper. Remember how hard that was the first couple weeks. So I think that additional stress took away what could have been a benefit from slowing down.

Pat:

Yeah, good point. I have to ask, with this kind of work, you were meeting with politicians, policy people, community, schools, I mean, you're really out there. Was there ever a moment that you just wanted to like walk away or you just wanted to just leave but you didn't, and why didn't you?

Sue:

You know, I never really wanted to leave, which I know sounds odd. I guess I was always one of those people that would look at a glass and I wouldn't say it's half empty or half full. I was just glad there was water in it. And so I always just felt like we could kind of continue to make progress. There were times when I was overwhelmed in terms of just the amount of work, but also in some ways, grief, walking beside so many people who, who struggled, whose loved ones struggled, who lost someone to suicide, sitting with them. It was absolutely sometimes very, very tough. And those were, those were hard days.

Pat:

Yeah. It's knowing that you're doing work that is so much bigger than you.

Sue:

Yes. Which always meant that I took care of myself last <laugh>.

Pat:

Yeah, I imagine. So you were a steady presence at the State Capitol. What's one legislative victory that still gives you goosebumps and one loss that really haunts you?

Sue:

Hmm. You know, there were so many good things, to be honest, that it's hard to pick one. I do think schooling was a game changer. 50% of all mental illnesses emerged by the age of 14. And so through the schooling program, if people aren't aware, grant money actually goes to a community provider like Change Inc. Who then co-locate in the school. And so they can serve any child, they, they can be on public insurance, private insurance. We can use grant money for children who are uninsured or underinsured. There's a firewall between education records and mental health records. The benefit is you eliminate barriers to accessing to care. Parents don't have to take off of work, they don't have to worry about transportation, not just in rural Minnesota, but in the city. If you have to take a bus from your place of employment to the school, to the therapist back, it can take hours.

Sue:

And the therapist gets to see the child in their own milieu. So I think it was really, I like to say the best thing to sliced bread, because I think it was extremely impactful on catching kids early and really supporting them. The one thing that work is still not done, and we came so close, is really separating out the children's mental health system from the Child Protection system. Because of the way that we fund residential treatment, we use what are called Title IV E dollars, which are child welfare dollars. And so in order to use those dollars, you have to go through child protection. Now, we changed the law over a decade ago to make sure that at least parents didn't lose custody. That they still got to make decisions about their children, but they still had to file papers with the court. But we had, we'd kind of separated it out, but then there was a Federal Change Families First Act.

Sue:

And so what it meant is that those families had to go back to doing a relative search and doing a screening where the county could invite any one of your families. And you know, these aren't sleepovers. And so our families are very upset. They're like, why are you asking this relative if they can take care of my child? When all the mental health professionals said they need residential treatment, they can't take care of them. It's, it's not possible. So unfortunately we had to do that. So we then created what we call a third path. So we would use state dollars to pay for room and board instead of Title IV E, which meant we wouldn't have to go through child protection. Unfortunately, the Department of Human Services put the rate so low that there was not a way for any provider to take it. So we are hoping, frankly, that next session they will fix that so that we can actually have that third path.

Sue:

So we, we did a lot of work to try to, again, separate out children's mental health. One thing that happened this last session is we had, we've had families whose children were boarding in the emergency room, there was nowhere for them to go. Sometimes they didn't meet hospitalization. And so they're like, you need to take your child home. And these parents were like, I can't, I can't keep them safe. I can't keep my other family members safe. You're not providing the services that my child needs, or they're waiting for residential treatment. And those families were referred to child protection for neglect. And so we actually changed the statute to say, that's not neglect. It's a system neglecting their children, not the families. And so you can't send them into the child protection system. So there's more work to do there. But, when I look overall over the past couple years, you know, again, I think moving things under Medicaid, Minnesota care, more under private insurance, thanks to mental health parody, you know, looking at housing, looking at employment, looking at evidence-based practices like first episode of Psychosis, assertive Community treatment. I mean, there's beena lot of good things that have happened. You know, we're the first state in the country to train teachers on the early warning signs of mental illness in youth. So when they looked at kids, it wasn't behaviors, there were symptoms. Um, because you approach that child so differently when you view it that way. A lot more work around suicide prevention, which I also think is really important. So there was, there really was a lot that happened that, you know, I'm, I'm really pleased about.

Pat:

You once talked about the NAMI Mommies, those fierce, relentless moms who came to the State Capitol, told their stories and refused to be ignored. Who were they to you? Not just as advocates, but as people?

Sue:

Well, they were really kind of my heroes. I remember seeing an old clipping because they were closing down Hasting State Hospital because there had been two federal lawsuits. And so Governor Perpich at the time, one to take the money from closing Hasting State Hospital and put the money in all the other state institutions. And they went to the Capitol and said, no, you need to use that money for community mental health services. And so they passed one of the first bills, it was called Sharing Life in the Community. And I saw a clipping where one of the legislators said, we'll, do anything. Just call off the mothers. And, and I love that. And even when I was at ARC, which was back in the eighties, there was an incredible group of women. And I think if we think about it back then, you know, especially in, in the seventies and early eighties, a a lot of women didn't work outside the home.

Sue:

And so played very key roles as volunteers. And these women, they would go to the Capitol, they told the best stories, like they used to go, they were all different shapes and sizes. And they would go and they would wear the same clothes. They would all go about out, out and buy the same outfit and then they would go to the capitol. And these legislators would be like, you are everywhere. Right? And so, you know, not realizing it was more than one person, but they were the ones that really taught me how important it was to listen to people's stories, frankly, to be in it for the long haul. And again, to make sure you're looking at how far you've come before you get, frankly, despair about the work you have left to do.

Pat:

And they're still pretty active today?

Sue:

Well, the women from the ARC, some have passed away. Many are in their nineties, late eighties. And even the NAMI Mommies that were originally, started, and this was across the country, they called them NAMI Mommies. Many of them frankly have passed away. And we actually had on video, one of our, our early founders, and she basically, I mean, she was in her nineties by then and she said, I can't go to meetings anymore. I can't do any of that. So it's up to the next generation. You gotta get up, you gotta get out, you gotta share your voice.

Pat:

Oh yeah. Now you've poured 24 years into this work, legislation, advocacy, systems change, but legacy isn't always what shows up in headlines or annual reports. What do you think your legacy is, Sue?

Sue:

I think it's just listening to people and helping them share their, their story. Have their voice heard at the Capitol or in the media, you know, or just raising public awareness. I think that part was just really important. So I felt I was able to support our grassroots to create change.

Pat:

Looking at everything that's moving forward. And given the political climate right now, I think it'd be fair to say it's a stressful time and it's a stressful time for important programs concerning mental health, physical health, health insurance. What do you see now that you're stepping away, what do you see for Minnesota in terms of continuing this advocacy for mental health care?

Sue:

Well, I hope the foundation that we've created will continue. So, you know, we have a system to alert people to when calls are needed and things like that. And, and I think people just can't give up. I mean, the changes to Medicaid are horrible. They just are. And I, they are gonna especially hurt young people with mental illnesses, you know, that's gonna be a huge thing. Yeah. I just, I just kind of hope that the people who come behind me just understand how important it is to, to kind of continue the work and to make sure that people feel empowered to share their stories.

Pat:

So you spent decades showing up for others, but what, in 27 days, the calendar is yours? What does this next chapter look like for you? What's calling to you?

Sue:

Well, I already decided I wasn't gonna make any decisions until January 1st. I just feel like I need a little over two months to frankly de-stress relax. So on the top of my list are naps, followed by walks, books, and friends. So I'm just gonna kind of focus on that for the next couple of months, see what it's like to not have anything to do, and then decide, you know, will I be on a board? Will I do consulting? Will I be a baby holder at some of the programs at HCMC?

Pat:

That's Hennepin County Medical Center

Sue:

And I'll, I'll figure out then what it is that I wanna do. I am looking forward to travel. I really wanna do a little bit of that. I have a daughter who lives in San Francisco and she always says, come in the spring when it's green. 'cause of the legislative session. I never could. So I'm like, I will see you in San Francisco next spring. So I'm just gonna kind of see, I've always had days filled with meetings or work or things like that. So it'll be different not to have anything. I've got some closets I can clean out too.

Pat:

So you're gonna have, every day is gonna be like a Saturday with nothing scheduled.

Sue:

Well, my Saturdays still were scheduled, right?

Pat:

So, alright, Sundays!

Sue:

This will be, this will be different. Yeah. 'cause usually I'd worked at least one, if not a little bit more weekend, a month, uh, every weekend. So one of the days. So this will be different. I'm, I'm not used to frankly, relaxing much. So

Pat:

I was gonna ask you, you don't strike me as the relaxation kind of person.

Sue:

No. My idea of of hell is going to a beach. So that's not something I'm gonna do at all.

Pat:

I'm right with you. I'm absolutely with you. Okay, I get it.

Sue:

Yeah. So that'll be different. Uh, one of my brothers gave me a book on how to be idle. And so I'm gonna read that book, um, and see how to do that. You know, I will fill it in again with walks. Um, I started Pilates a little over a year ago. I'd like to go more than once a week to that. And I have a huge pile of books that's are just waiting for me to dig into.

Pat:

Great. Well the thing about retirement is that it is a chapter that you can write. I mean, you can write it now completely.

Sue:

All my friends are retired and so they always told me that you'll know when it's time. I'm 71. And last year at this time, it wasn't time, but it was about December of last year that I was like, you know, I don't know how many more years that I can do this. And just decided that this fall would be a good time to retire.

Pat:

Well, good for you. So Sue, thank you for coming back to Fill To Capacity. You know, you spent years driving change without fanfare, just focus, persistence, and results. And your work didn't chase headlines. It reshaped systems and expectations. Here's to the road ahead. Wishing you time, space, and whatever is next on your terms. Thank you for being here.

Sue:

Thanks so much, Pat, I appreciate it.

Pat:

Thank you listeners, for joining us today. Take care. Bye.