New Year, More Impact With NAMI – Episode 60

As NAMI approaches its fiftieth anniversary as the nation’s largest grassroots mental health advocacy organization, NAMI’s Chief Development Officer is chatting with our Chief Innovation Officer, Darcy Gruttadaro. Throughout their conversation, listeners will hear about NAMI’s updated strategic priorities, our plans for growing our impact in 2025, and how we plan to expand our impact for individuals and loved ones experiencing mental illness. 

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

Transcript

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We have done such a great job as a mental health movement in reducing the stigma associated with mental health conditions, and really elevating those conversations and saying it's okay to not be okay, and having people come forward and say, I also have a mental health condition, or I love someone with a mental health condition. And by all of those people and stories evolving and coming together and coming out and coming full circle, we've made it okay to not be okay. But now we have to make sure that we have the resources, the services and the supports for those people that are coming forward and saying, I need help, I need support. So I'm really excited to see how NAMI can lead the movement around that demand and that evolving demand to make sure that we meet people where they are with that lived experience, and also that subject matter expertise. Really, truly. NAMI at its core, is just a group of people who demanded more and demanded better for the people that they love. Welcome to Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. I'm your guest host Darcy Gruttadaro NAMI’s Chief Innovation Officer. NAMI started this podcast because we believe that hope starts with us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories. Hope starts with us breaking the stigma. If you or a loved one is struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode, with each conversation brings you into that collective, so you know that you are not alone. I'm Darcy Gruttadaro, NAMI’s Chief Innovation Officer. I started with NAMI and spent 17 years working on youth and young adult issues, on policy issues, and more. I left in 2017 to lead the American Psychiatric Association Foundation's Center for Workplace Mental Health, and I was delighted to come back to NAMI in 2022 to lead the Office of Innovation. Our team covers critical issues to NAMI’s growth and success, including workplace mental health. So again, bringing the workplace mental health back because businesses increasingly have recognized that mental health is a business imperative, it's not just a nice-to-have. We also focus on youth and young adults and develop lots of resources for families, for young people, for teachers, for child-serving professionals and all stakeholders interested in the future of our nation and the youngest people who really need the support in mental health now more than ever. And then the third area we cover is cross-cultural innovation and engagement. This is about building NAMI’s tent, really focusing on diverse communities, bringing programs to communities that have historically been marginalized, including HBCUs, including Black African ancestry, Hispanic, Latin American, American Indian, South Asian, and more. So our work is really critical to NAMI's growth, and I am really excited today to have the opportunity to talk with someone who has done a tremendous job on NAMI’s growth. And that is Jessica Edwards, the Chief Development Officer. And I will ask that, Jessica, please introduce herself and then we'll jump into the questions. Thank you so much, Darcy. It's so exciting to have this conversation with you today. As Darcy mentioned, my name is Jessica Edwards. I'm NAMI’s Chief Development Officer. I've been with the organization for over a decade, and I've worn a variety of different hats in the development department over my time at NAMI. I started as a coordinator about 12 years ago and kind of worked my way up, and now leading all of our fundraising efforts across the organization, and it's just a tremendous pleasure. It's the-- absolutely the best job I've ever had. And I'm so proud of the way that we've grown our revenues, certainly, but also the way that we engage stakeholders corporations, foundations, individual donors and stakeholders who are invested in mental health. It's just been the thrill of a lifetime to watch this movement continue to grow. And I'm really excited to talk about that with you all today and with you, Darcy. Thank you. Jessica. And what better way to kick off 2025 in the new Year than talking about our plans and really sharing with you information about our new strategic plan? So the theme of today's podcast NAMI’s plans for 2025 and beyond. We have taken part in a thorough strategic planning process that included the alliance across the field. We have a broad array of NAMI leaders at the state and affiliate level. We have a very engaged board of directors and other stakeholders that we work with, who really had an opportunity to weigh in on the areas that NAMI really excels at and growth opportunities. So we are going to introduce NAMI’s strategic priorities and more. So I really want to start, Jessica, with having you expound on 1 or 2 of NAMI's priorities in our new strategic plan, and specifically to highlight changes from previous priorities and explore new ways that we are growing our work in this movement. Yeah, absolutely. So the three big priorities for the new strategic plan are to strengthen the alliance and help our local NAMI reach full potential, turbocharge NAMI's impact through awareness and advocacy, and drive excellence across programs and initiatives to meet the evolving demand. And so they're all exciting to me. I think it's really innovative and just demonstrates the national movement that we've been experiencing with mental health is such a topic of conversation. But the one I really want to pick on is that last one about driving excellence across our programs and initiatives to reach evolving demand. We have done such a great job as a mental health movement, and I like to think that NAMI has been a big part of this in reducing the stigma associated with mental health conditions and really elevating those conversations and saying “it's okay to not be okay,” and having people come forward and say, I also have a mental health condition or I love someone with a mental health condition. And by all of those people and stories evolving and coming together and coming out and coming full circle, we've made it okay to not be okay. But now we have to make sure that we have the resources, the services and the supports for those people that are coming forward and saying, I need help, I need support. So I'm really excited to see how NAMI can lead the movement around that demand and that evolving demand to make sure that we meet people where they are with that lived experience, and also that subject matter expertise that we've had for almost 50 years now. Oh that's fantastic. And I know we always say we want NAMI to be a household name because too many people say, I wish I knew NAMI before or I wish I knew NAMI when. That is really changing. And you can see that when we do presentations, say for workplace mental health, we ask how many people know about NAMI? It used to be a few hands would go up maybe 20 years ago, but now we have so many who recognize NAMI. Our brand is strong and they really see the important work that we do at the community level, at the state level and at the national level. So really exciting. And can you tell us a little bit about sort of what we've accomplished over the last 50 years and what we have most to be proud of? Absolutely. One of my favorite things about working at NAMI is that we were started by mothers. I myself am a mother, I have two small children and I just find so much pride and find it so rewarding to work for an organization that has that family foundation. And it really, truly NAMI at its core, is just a group of people who demanded more and demanded better for the people that they love. And I love that. And that's one of my favorite things about working here. But a few highlights that I want to make sure I amplify as we approach our 50 year anniversary in 1990, NAMI helped win the inclusion of people disabled by mental illness in Americans with Disabilities Act. Also in 1990, we created the NAMI helpline and we just recently created a NAMI teen and young adult helpline in 2023, which is really exciting. In 1996, NAMI advocacy to intact the Mental Health Parity Act of 1996 resulted in the law's passage and ended discriminatory annual and lifetime dollar limits for mental healthcare. In 2008, NAMI's long time advocacy helped to pass the Paul Wellstone and Pete Domenici Mental Health Parity and Addictions Equality Act, establishing mental health parity. That was absolutely one of the biggest cornerstones of our time as an organization. Darcy, if you want to add anything to that, I know you were working in the policy space at that time. I'm sure you have some milestones or thoughts you want to amplify around that one. I would say yes, absolutely. And it's the relationships that we have on Capitol Hill. NAMI has been a leader for many years on Capitol Hill, but also in state capitals around the country. I've had a chance, and I'm sure you have too, Jessica, to go with state leaders to the state Capitol and walking through the halls to see legislators greet the NAMI leader openly and say, how are you? What's new? And obviously just know that my first name is a real statement to the power of the grassroots, because we know very important things happen at the federal level on the Capitol Hill and in executive branch agencies. But also a whole lot happens at the statehouse. And more and more, we're seeing great action happening at the statehouse. So I know we've worked on early psychosis and other initiatives to really expand programs, and that a lot of that work has happened at the state level as well. Absolutely. And I absolutely have to highlight our incredible leadership and advocacy for the creation of the nation's suicide and crisis lifeline, 988, which was officially launched in 2020 as well. So there's been a lot over the past almost 50 years. And I think that as we approach that 50th anniversary and look towards what's next, the best is yet to come. Yes, a big shout out to our colleague Hannah Wesolowski, who has been a tremendous leader with her team on 988. If you haven't been to reimaginecrisis.org, take a look. The resources there are incredible. State maps showing activities happening and more. So it is really something to be very proud of and to know that now we are really focused on building out those crisis services, which is so critically important too. So the work continues. We're building on the great work that's already been done and interested in kind of how our past has helped inform our updated strategic priorities, especially as we look forward to the next 50 years of mental health advocacy. Absolutely. It's so interesting you know, as Darcy and I have both been at NAMI for a while now, Darcy longer than me and left and came back. So we have really similar but also different perspectives on the work and on the mental health movement, which I just adore in a colleague and a teammate and in a friend. But I think for me, the thing about how we stay who we are, but also evolve to what we need to be, is keeping that lived experience in the power of the grassroots front and center, but meeting the new demands and continuing to meet people where they are. So when NAMI started, there was no social media. The thought of an online education class or support group or resource wasn't even something that could be comprehended. So the use of technology and meeting people wherever they are, in particular young people, which is behind a screen, is critical, and it's going to continue to be critical as we move forward into the next 50 years into this strategic plan. However, the cool thing about NAMI is that we're never going to lose who we are. There's always going to be that in-person family to family class in a church basement or in a community center where people can go and hear from people who have been where they are and know that they're not alone. And that's the power of NAMI. That's our sweet spot. That's what keeps us going. That's what keeps the grassroots going. And that's what we have to ensure that we never lose and always harness moving forward, building positive momentum towards reaching more people, reaching them where they are via technology or otherwise, but always remaining true to where we started and where people will always continue to need us to show up. Absolutely. I think the power of stories, as you mentioned, Jessica, that's where NAMI really shines because of our grassroots reach. And it is incredible to hear at a state legislative hearing or a federal briefing on the Hill, to hear those stories of family experiences, both negative and positive, and how people got access to care and how it made all the difference in the world for them. We have that grassroots reach that makes all the difference, as you mentioned. Let's talk about our new plan in terms of leading up to the 50th anniversary, but also the three long-term impact goals and how those really play a huge role in the work we'll be doing going forward. Absolutely. So people prioritizing mental health as you would any other health condition is just going to be critically important. We've gotten much better at it as an organization, as a society, as a country, as a nation, and hopefully across families, across the country too. But we have to treat mental health the same way we would treat the rest of our physical health. And as soon as we are able to do that cohesively across all of our systems and all of our care models, the better outcomes we're going to have. Just like any health condition, the earlier we experience treatment or intervention or identifying signs and symptoms, the better likelihood for a positive outcome. So just like any other health condition or any other challenge, the sooner you know and can start taking those actions, the better the outcome. So we have to make sure people get the help they need early in their process and ensuring that people get the best possible care. Again, we were founded by a group of mothers who demanded more, demanded better, and we're still that group of advocates demanding more, demanding better. We have to have innovations in mental health research. We have to have better treatments, more treatments, and more access to treatments to ensure that people can live well and thrive with their mental health condition, just like they would with other health conditions across the body and across the health system. Yes, and people getting help early is so critically important because we know the research shows we have a ways to go. We still have that long gap of time between the onset of symptoms to intervention. Some of that is driven by stigma. Some of that is driven by people understanding what they're experiencing. And that's where NAMI comes in and is so important to share information about early warning signs. But we know for some serious conditions like early psychosis, the earlier someone gets help, the more you lessen the long-term severity. What could be more compelling than that? If you can catch something early, like schizophrenia, I mean, can lessen the duration and then the severity of the condition. What could be more important than that? So that's such a high priority. And then prioritizing is to recognize that we have health insurers that don't deny care, that cover mental health and the way it should be covered, that we are prioritizing mental health in our schools and sharing information and having training and making sure that young people understand what they're feeling and experiencing could be a mental health condition. We know half of all lifetime cases start by age 14 of mental health conditions and 75% by age 25. So these are conditions that start early in life. And that is why this priority, this long term priority is so critically important to prioritize, to get help early and to get effective care. Because without effective care, there may as well be no care at all. We wouldn't accept anything less for other health conditions like cancer, like diabetes and others. And we certainly shouldn't for mental health care. So exciting strategic plan, lots of opportunity and so happy to see that NAMI is really diving in on these critical issues. So this is a key issue for you, Jessica, because you forged such impressive relationships with our funders and supporters. What role can our supporters play in expanding our impact? How would you recommend new champions get involved? And what about our seasoned advocates? Such a great question. Such an exciting question. So NAMI is an army of people, a network of people who care about mental health conditions. And there are so many ways for you to get involved. Of course, you can do a NAMI walk in your local community. There's over 100 across the country and those are really exciting and powerful engagement opportunities at the community level to meet people who have been where you've been and who care about this issue and engagement. There's tons of ways for you to get involved from an advocacy perspective. You can advocate at the local or state or national level. You can share your story. You can sign on to letters. You can email or write to your congressperson or senator about issues that you care about. Certainly need to vote for mental health anytime there's an opportunity to do that at any of the levels, right? You can take part in an education class or support group if you need support for yourself or someone that you love. We have so many resources and programming both in-person and virtual. As I mentioned earlier, if you work at a workplace with a workforce that's substantial, encourage your workplace to be a stigma-free partner. We have tons of resources, and I'll let you speak to this in a minute as well, for companies to lean in and to make sure that our workplaces are stigma-free so that people at work can get the support they need, and that we can really help employers know how to be mentally healthy for their employees and their employees’ families. And then, of course, reach out to your local NAMI if you're not already connected. That's another really, really great way. But do you want to speak to the workplace piece? Because I think there's some really good nuggets there that we could talk about. Absolutely. And I set up a Google alert to get stories that are in the press about workplace mental health. And I've been doing this for the past, oh, nine years. And it used to be there would be one business journal story, maybe a week, that I would read and see how businesses were looking at the mental health issues in the workplace and what I know now is that I receive about five stories a day that really focus on the fact that employers see that mental health and well-being impact engagement and productivity and performance and retention, and all the areas that really go to the bottom line. And not only that, but one thing that we know from some of the work we've done with youth and young adults, but that also businesses increasingly are recognizing, is that young people and it's often high performers, are coming into the workplace with the expectation that their employer is making mental health visible. It's something that is talked about. It's something that they are sharing resources on. And last year, NAMI did our first annual workplace mental health national survey. And in that what we learned was 50% of respondents. We-- by the way, back up a minute, we surveyed organizations with 100 or more employees, and we had more than 1200 responses. And what we heard was that the expect-- more than 50% of people said they expected mental health to be something that was visible and talked about at work. We are just about to work with our independent polling firm on our annual survey #2, which will come out in February, and we're very excited now that we have benchmark data to really compare against, to see how things have changed over the last year. But we certainly know, again, business imperative impacts the bottom line. At Davos in fact, this month, there will be sessions on workplace mental health. This is a global issue. Well for firms that focus from a global perspective this is really critically important. Absolutely. And what you just shared is exactly the mental health movement. See change that I was talking about earlier. Right? Five years ago, ten years ago, one Google alert a week now, five a day. People are realizing that mental health is health. And we have to talk about this the way we would any other condition. Absolutely. And I wondered if you might just mention our ambassadors program, which I think is really exciting. Absolutely, absolutely. I would love to. Several of our NAMI ambassadors have actually been on this podcast with Dan and with others, which is incredible. But we are so fortunate to work with a group of, stakeholders and leaders in the mental health space who are willing to use their time and talent, platform and story to help other people know that they're not alone. And it's all part of this same kind of groundswell movement to ensure that people hear stories that they resonate with. And when we leverage our ambassadors and their big platform and opportunities to reach people where they are and have someone that a young person or any person admires and looks up to, it's so much easier to reduce that stigma and create that cycle of, wow, if that happened to that individual, it's also happening to me. It must be okay. It's okay to not be okay because it's okay for this person. So it's part of that bigger storytelling movement and the ambassador program. We're just-- I'm so fortunate to get to work with those amazing humans. They are just so lovely that they share their time and talents and treasure with NAMI. It's really just been an honor to get to know them and work with them. What a great program. Thank you for letting me talk about it for a minute. Oh no. I know how important this is. And whenever they come to our big conferences or participate on a podcast or a virtual town hall, I'm so proud that they have come to NAMI and really said, I want to step up. This is something I care deeply about, and I want to make sure that I am part of the movement. So whether it's musicians or former athletes or very big names as well, and I just want to touch on athletes for a minute because we know having worked with former athletes and I've been active on the NCAA mental Health Advisory group, and I know, Jessica, you've worked with athletes. We are now looking at teen athletes. We know that athletes are under tremendous pressure and we know the stress is high. We know that mental health conditions are not at all uncommon. We know there have been some high profile suicides, sadly, among athletes at Division I schools, big names. So we want to make sure that we are building out. And this is a new project for 2025. Additional resources and we're working with athletes to understand what messages really resonate. That's something we do at NAMI is we don't assume in our ivory tower that we know what's best. We go straight to the source. We really get a sense of what messaging is important, what works best, how do we phrase this in a way that really connects with people, that meets people where they are? There's so much to that that's really deeply important. So speaking of deeply, I just want to mention too, that our board has been very supportive of expanding our work with the faith community. We know that for many families, faith is a place they turn first when something is just not right in the family. And that includes people experiencing mental health conditions, mental health crises. So we really want to make sure that we are connecting with that. We are supporting faith leaders, that the grassroots-- some of our grassroots organizations are working really well with the faith community, but we want to make sure we're providing the resources that communities need, that faith leaders need. And faith leaders have increasingly come to us and said, NAMI, we need your help. People are turning to us. They want to know about support. They want to know about resources. And the nice thing is we can say NAMI’s in your community. So I don't know if you want to say a word about that, Jessica. I know your team has been so supportive about expanding this work. Absolutely. I think what I'd like to just add on is, over our-- this kind of like push-pull of how do we stay who we are and stay true to who we are and always will be, but also meet this new growing demand? One of my other favorite things about NAMI is that our board is comprised of people with lived experience and the people that we serve, so I love that our boss, Dan Gillison, NAMI CEO, his boss, the Board of Directors, is comprised of the people that we serve, people with lived experience, and that ensures that no matter what, our work is always mission-aligned. And I think that's such a unique and special and valuable thing to say. Like, I work with a lot of my nonprofit colleagues and I know lots of people in this space, and it's really very unique with that lived experience, truly being at the top with our board of directors. And I'm so incredibly humbled and grateful to get to work with them and learn from them. And I think that that's one of the things that makes NAMI really unique and makes us such a leader in this space, because it's really, truly being driven in that full circle way by the people that we serve. I couldn't agree more, and I'm often humbled by the caliber of folks on our board. We have a pediatrician. We have a psychiatrist, we have a therapist. We have folks who have worked with the entertainment industry at a very high level. We have folks who run highly effective affiliates that are really large and reaching folks in the homeless community. Folks in the justice community, our former president is a president of the board, is a judge in Ohio. So, I mean, there's just the full array. But I appreciate so much, Jessica, how much we all are working on staying mission-driven, because so much comes to NAMI and there's so much opportunity to have mission drift. But our leadership keeps us very focused from the board level on what is our mission and what are our critical issues. And with this new strategic plan, it really wraps it up with a bow. It does. It absolutely does. And that's actually the thing that gives me the most hope. NAMI is the place where you go when you don't know where else to go. NAMI is going to meet you where you are and we've been there before and we know the way out. Like that's what gives me hope is that no matter who comes and knocks on our door, we're going to have something for them. We're going to be able to point them to a direction, to a resource, to a story, to a person who's been there before and knows the way out. And there's something so powerful about knowing that you're not alone, especially when it's hard. You know, another thing I love about NAMI and that gives me hope, we don't turn away when it's hard. There's a lot of good stuff, there's a lot of hopeful stuff, and there's a lot of hard stuff. And NAMI can be there for you. No matter where you are on your journey, even when it's really hard. And that gives me a lot of hope. Darcy, what gives you hope? Oh, I'm so glad you asked that because that was my next question for you. But you did that so beautifully. I did want to say too, before I talk about what gives me hope that most recently in New Orleans and then now with the fires in L.A., one thing NAMI does is we immediately reach out to our local chapters and we provide them with the support they need to support people on the ground, because we know these tragedies happen, and whether it's the places we've most recently had tragedies or tragedies that happen around the country, NAMI is here. Our team goes into the war room, we get to work on how do we support the community. We know there are people living in those communities who live with mental health conditions, and we want to make sure we support individuals and families, and that we provide the support to the leaders on the ground who are doing the hard work, as Jessica said. But to pivot over to hope, because I love the word hope. I had a young person I worked with not too long ago. He shared with me that to him, hope means “hold on, pain ends” and I just-- that has always stayed with me. And I just feel so strongly that that speaks to what Jessica just described. That we’ll be there, we’ll support you, and we'll help you get there to that place you're seeking to be in. But I would say for me, when it comes to hope, it really is the youth and young adults that are doing the wonderful work at NAMI, whether it's through our HBCU initiative or NAMI on Campus initiative, our NAMI Next Gen initiative. Seeing the NAMI Next Gen, which is a group of ten young people and by the way, we have a new cohort every year, and this year we had 700 applicants for ten slots. We stay connected to those others through a community of practice, a newsletter, and we encourage them to apply again. But we have ten paid slots for young people and they have been on Capitol Hill. They've done press conferences, they have been keynote speakers at the Substance Abuse Mental Health Services Administration meetings. They are lighting it up with the tremendous work they do, and they are informing our work, too. We take seriously that we need to hear from them in terms of what we're doing, to make sure we are developing resources, programs and initiatives that meet their needs. So there's so much more. Our helpline is, Jessica mentioned, added a new youth and young adult section, segment that is staffed by young people because they can identify so well to those who reach out. So my hope is that these are the future leaders of NAMI and that we are in very good hands, and we take seriously our responsibility to really make sure that we listen to what they share and that we take seriously their input on all things we do at NAMI. So we have a lot of hope for the future. I do too, that's awesome. And I really hope this conversation helps listeners see how NAMI is expanding impact and working to help increase access to mental health care. Thank you Jessica for the tremendous work you do at NAMI, the partnerships and relationships that you build just across the spectrum of mental health interests, and for the conversation. And thank you to all of you for joining us today. This is really important to us that we are part of this movement with you. This is about all of us. It really is. It really is. Thank you. Darcy. This was a blast. We'll have to do this again sometime. Thank you for having me. It's just such a pleasure to talk with you and to talk with all of our listeners. Thank you so much for having me. This has been Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. If you are looking for mental health resources, you are not alone. To connect with the NAMI helpline and find local resources, visit nami.org/help, text “helpline” to 62640 or dial 800-950-NAMI, which is 6264. Or if you are experiencing an immediate suicide, substance use or mental health crisis, please call or text 988 to speak with a trained support specialist or visit 988lifeline.org. I'm Darcy Gruttadaro, your guest host. Thanks for listening and be well.