- [Jeff] Welcome to "Healthy Minds."

I'm Dr. Jeff Borenstien.

Everyone is touched by psychiatric conditions, either themselves or a loved one.

Do not suffer in silence with help, there is hope.

(ambient music) Today on Healthy Minds.

(ambient music) - First of all, all of our programs are free.

And if you think of a family that's navigating a diagnosis of a loved one, schizophrenia, bipolar, well, first of all, that diagnosis normally is very different for them than say, an ACL injury or a shoulder injury or an ankle injury.

So that family is trying to look for information and they're looking for resources.

And our whole objective is to design a community that cares for our loved ones that are living with mental illness so that they can have fulfilling lives.

- That's today on "Healthy Minds."

This program is brought to you in part by the American Psychiatric Association Foundation (ambient music) and the John and Polly Sparks Foundation.

(ambient music) Welcome to "Healthy Minds."

I'm Dr. Jeff Borenstein.

The National Alliance on Mental Illness, NAMI started as a group of families around a kitchen table in 1979.

Today its reach is across the United States as the largest grassroots organization focused on mental illness.

I speak today with Dan Gillison, the CEO of NAMI.

(ambient music) Dan, thank you for joining us today.

- Jeff, it's so good to be with you and thank you for this opportunity.

And on behalf of NAMI, we really appreciate what Healthy Minds does in speaking to the mind and health.

So thank you for this opportunity.

- Thank you.

I wanna jump in and have you tell us about NAMI.

What does NAMI do?

- Wow thank you.

NAMI is the National Alliance on Mental Illness.

It's the largest grassroots mental health organization in these United States.

It started in 1979 by two moms whose sons had been diagnosed with schizophrenia.

They compared notes.

They heard that the reason that their sons, or they had been told that their sons were schizophrenic, if you will, because of how they were being raised, and they elected to start advocating for their son's wellbeing.

So from 1979 to 43 years later, we've grown as the largest grassroots organization with over 660 organizations across these United States and communities everywhere.

And we like to think of ourselves as the DNA in the communities helping individuals and families navigate mental illness.

- What types of actual help does NAMI provide locally to families and to individuals?

- First of all, all of our programs are free.

And if you think of a family that's navigating a diagnosis of a loved one, schizophrenia, bipolar, well, first of all, that diagnosis normally is very different for them than say, an ACL, injury or a a shoulder injury or an ankle injury.

So that family is trying to look for information and they're looking for resources.

And what happens with NAMI is we provide those through our programming from the standpoint of making sure that families have someone to talk to.

That's one thing.

And that are going through what they're going through that is navigating what they're navigating.

Many times in this environment, you have a individual and or a family that feels all alone, that they're the only one going through it.

These programs that we have, family to family, Connections family and friends, and many others are programs where we connect families together so that you're sitting there and you're looking across from someone and all of a sudden when they speak, all of a sudden you recognize you are navigating the same areas.

So that's one of the things we do.

The other thing is that our local leaders, many who are volunteers, let me stop for a second and just thank all of our NAMI executive directors and many of them are volunteers who have taken on the roles they've taken on because they've navigated this space with a loved one and now they want to give back.

And our whole objective is to design a community that cares for our loved ones that are living with mental illness so that they can have fulfilling lives.

So how that happens at the local level is you have an executive director who's connected to the community that knows where all the service providers are, that knows who provides what type of service.

So they are there to connect that family and that person to those resources.

So that's the other part of it.

It's not just our programs where we provide those for free and you come and you sit there as a family and you navigate that program with us.

And it really helps.

It's also our leaders and their teams that it's relationship management.

They do a lot of relationship management in that local community where they can connect services and service providers and they can understand where you are and what you need and then try to help facilitate getting you to those resources.

- It makes a such a big difference for families, especially at the beginning when they find out about this diagnosis for their loved one, whether it be schizophrenia, bipolar, other conditions, that they know they're not alone and that they can make use of the experience of other people who've been there and done that and hear from them what they should do next.

- Yes, it's critically important that those families and individuals know they're not alone.

And if I could pause for a second and just think about the scenario of that diagnosis, and all of a sudden you get this diagnosis for your loved one and your whole disposition is to try and help them and help yourself.

You feel like they are alone and you feel alone.

- I think in addition to the support and guidance, knowing you're not alone is from some of the public events such as the NAMI walks that happen around the country.

Tell us about that.

- Oh, the NAMI walks are so powerful and really appreciate that.

And I wanna come back to the, you are not alone in a minute and tell you about something, but the walks are, they're community based.

They're the fabric of the community.

They're fundraisers but they're also family events, if you will, where when we do these walks in communities across the US and these walks are also fundraisers for those local organizations that are in these communities to do their work.

And community is so important in this space, Jeff, we both know this very well, that community is that connective tissue and it's so critically important.

Now, may I come back to you or not alone?

- Yes, please.

- We just wrote our first book and that is without Chief Medical Officer, Dr. Ken Duckworth.

And the title of the book is "You Are Not Alone: NAMI's Guide to Navigating Mental Health."

And what's so really critical about this book is that it's not from one person's perspective.

The book is written from the standpoint of being very inclusive.

So it's not NAMI only resources.

We talk about all of the different mental health organizations and all the resources that they can bring to bear in terms of helping a family.

So it's all inclusive.

So you see so many acronyms in there because we mentioned all the mental health organizations and we don't just mention them, we actually give assets and tools that they may have.

So we want this to be a guide for families who we don't want them to be alone.

So "You are Not Alone: NAMI's Guide to Navigating Mental Health."

- I wanna shift gears a little bit and talk about advocacy and the areas of advocacy that NAMI has pursued.

Tell us about that.

- I can give you a local a more of a drill down example.

Excuse me, with 988 reimagine crisis response if I might.

If you think about where we are in terms of, we had a national suicide prevention 10 digit number, it was not easy for people to remember that number.

So now we have a three digit number for suicide prevention as well as mental health crisis response.

- The new 911 for mental health is 988 and that's an important message for people.

- It's a very important message and it's a part of that crisis continuum of care.

And this is a once in a lifetime opportunity with 988 to really look at building out a full continuum of care and using 988 as that platform.

If you think about the mental health space before COVID, we all called it the fragmented mental health system.

That's what we heard, fragmented mental health system.

So my question to you, and I'm sorry to to to change the interview, to the interview, the from the interviewee to the interviewer, but Jeff, if it was a fragmented mental health system before COVID, what is it coming out of COVID when the resources are low and the demand is high?

The other thing I would offer to you is that this is very similar to the Katrina.

When Katrina hit New Orleans, the Army Corps of Engineers for years have been saying that if a Cat5 storm hits New Orleans, these levees won't hold.

Well, we've been saying it's been a fragmented system for years.

And if it didn't and if it was fragmented then what is it now?

And this is our opportunity to change it.

And 988 is a conduit to help us do that.

It is not the total, but it is a big part of how we can change this system.

- It it's potentially a very big step forward for us.

And even now with the fragmented system that we have and so difficult for people to access care, making use of the guidance and support from NAMI at the local level really can help people get that access to care that they so desperately need for themselves and for their loved one.

- Yes, it will.

And what we want to do is make sure that folks know how to get us at the local level because all things start locally when you're talking about a family and a person.

So it's nami.org/findsupport In addition to our programs that we offer for free in communities, we also have a national help line.

And that help line is at 1-800-950-6264.

And that helpline is there to provide resources to individuals that are looking for information on how to navigate mental illness.

- Extremely important because people have an emergency, get a diagnosis at all hours.

This is not a nine to five thing, this is 24/7.

And having that available for help makes all the difference in the world.

- Yes, it does.

And we've seen our numbers go up in terms of individuals accessing that number and looking for resources.

So from suicidal ideation to major depression to schizophrenia, all the different areas that we measure, we've seen the numbers go up and the numbers have gone up in the double digits, if you will.

So we see more communities needing help and more individuals needing support and needing information and trying to navigate that uncertainty of a lot of different kinds of things.

And that's why we're so excited about our helpline.

And we also increased our hours by about four from the standpoint of, because of what we were seeing and the demand.

So we really do see that helpline as a resource.

- I wanna shift gears again.

NAMI, one of the focuses of NAMI relates to diversity, equity, and inclusion.

And this is such an important issue.

I'd like you to speak toward that.

- Diversity, equity, and inclusion.

You know nothing about us without us, and we wanna make sure that all voices are at the table.

And in terms of to make that happen, we have to be very intentional in regards to diversity, equity, and inclusion.

We have to define, clearly define what we mean by diversity, what we mean by equity, what we mean by inclusion.

And then we also have to walk the talk in terms of that.

So we're very intentional in terms of our body of work and very intentional in terms of what we're going to continue to do in meeting communities where they are.

In communities of color, we have some programs, one of those is called Compartiendo Esperanza that is a program that is for our Latinx community.

We have another program that is for our black community, if you will, and it's called Sharing Hope.

And these are two distinct programs that are built and constructed for those communities.

And our take rate on them is really getting much better, if you will, because we're getting them out.

And we're also using the faith-based community, Jeff, that's another part of diversity, equity inclusion is being very inclusive of all the different sectors.

And if you think about a community where is the trust in a community?

Many times it's with the faith-based leader.

Be they a Rabbi, Imam, a priest, a baptist minister, but that is that trusted advisor in the community.

So we are very intentional in reaching out to the faith-based community and have a national conference that we do call Pathways to Hope.

And we're also reaching out to Asian communities with some of our work as well.

So we're very intentional.

And some of our work, we've actually translated into multiple languages and we are going to drive that even further going forward because it is about diversity, equity, inclusion.

And we also want to get to our young people.

We started a program with what we call Next Gen, next generation leaders, next generation.

So Jeff, we sent out an email, if you will, and it was for 10 young adults to come and work with us for a year with a small stipend to influence our work to inform our work.

We got 740 young adults that actually applied for 10 positions.

Young people care, young people wanna be a part of this solution.

And it's just so amazing with the 10 that we were able to bring on what they've been able to help us with.

And we also have one of our programs that they've helped us influence.

Ending the Silence is a middle school and high school program Ending the Silence, the silence about stigma.

And so we're excited about working with these young adults because their sense of passion, their sense of purpose, is really contagious.

And we think that they will be forced multipliers as we go forward.

So young adults, faith, communities of color and the other one is historically black colleges and universities.

We wanna be very intentional on our outreach to the historically black colleges and universities as we see the numbers there in terms of addressing mental illness as well as navigating being the first time you're away from home, if you will.

And where can we help them with that?

But we're also partnering with other organizations at all the universities.

So, but as you talk about diversity, equity, inclusion, I wanted to give you that.

- Thank you for sharing all that.

Another area that's important that I know NAMI's involved in is the LGBTQ community.

And I'd like you to speak a little bit about that as well.

- Yes, that is also represented in terms of that community is represented in all of our work and it's thought of in all of our work and it's also represented in our Next Gen group.

So we're very intentional in our work in the LGBTQ+ community and also wanted to speak to that from the standpoint of we wanna make sure that we walked the talk.

So as a couple of things, I wanted to slow down and say right here, first of all, our workforce is representative all genders, all demographics informs our work.

The other thing is that from a mental health standpoint, we have lived experience as a part of us walking the talk.

So in addition to LGBTQ+, communities of color, that's also represented in terms of lived experience.

Where I'm going with that is that 75% of our board, the mandate in our bylaws is that 75% of our board has to be representative of lived experience.

We're also very intentional in our sourcing, recruiting, and hiring to make sure that we are representative of all communities and all demographics so that we have all voices, nothing about us without us, and we wanna make sure that all voices are included and we partner with the Trevor Project and other organizations to make sure that we're intentional with that work.

- I know from attending many, many NAMI events over the years, when you look at who's there, it's everybody because these conditions affect everybody.

So the work that you are doing to bring everybody in and make sure everybody feels welcome is so important so that people are not excluded and they're a part of a community to get the help that they need.

- Yes, it's critically important and we work to be very inclusive and very thoughtful in being inclusive.

So for our conventions, our annual conventions, we really start a year in advance, if you will, just like many organizations.

But we start a year in advance about looking at our audiences and looking at who we need to have there, who we want there, and how do we go to different communities to make sure they're included in our conventions.

And we liken it to a quilt or a tapestry.

And if you think about a quilt there's patches on that quilt, but the one common thing is on that quilt is that thread for each one of those patches.

For us, every one of those patches represents a community.

It represents a demographic.

And what we want to do is make sure that every one of those patches constructs that quilt.

That is our work and our convenings.

We see ourselves as a navigator and a convenor.

And when we talk about being a convener, that's everyone.

We don't want anyone to feel alone and we want everyone included.

- If somebody's watching now and their loved one has one of the variety of psychiatric illnesses, schizophrenia, bipolar, depression, anxiety, what do you say to that loved one and the benefits of them reaching out to NAMI?

- First, the thing I I would say to them is we wanna make sure, you know you're not alone, that we care.

And that is a part of our mission, is to make sure that families and individuals know that we care and that we are a resource.

So we want them to reach out to us and they can reach out to us either through the helpline that I mentioned, or they can reach out to us through nami.org.

But we are that organization that exists for individuals, just like you just spoke of that diagnosis that just occurred and now you're trying to figure out what to do?

Who do I call?

And many times we know that there's isolation because families don't want to tell a, "Oh, guess what?"

And so we are that organization they can reach out to and find out what do I do?

Where do I start?

And the other thing is, I'll go back to the book.

We actually have that practical experience in those practical situations where family says, we went and we knew that there was something going on and we got this diagnosis and we didn't know what to do, and then all of a sudden this is what we did.

So we like to say that if you have not, this is something that's critically important from the standpoint of what it provides to you and from the standpoint of what you just asked.

And if you will bear with me for a second, this is not to sell it.

Jeff, this is because people don't care how much you know until they know how much you care.

And if I could leave anything with your audience, it would be I want everyone to know that NAMI cares, and here's where I want to go with that.

I want to read you the first few titles.

Do I need help?

The paradox of diagnosis.

How do I find help?

Minding the many gaps.

Pathways to recovery, first steps.

Added complexity, co-occurring, substance use conditions.

The impact of trauma, helping your child, teen or young adult.

Jeff, those are just the first seven chapters.

So I just wanted to illustrate that from the standpoint of NAMI cares and NAMI provides this, and in the back, I mentioned this before, but for a chapter like how do I find help minding the many gaps we have organizations listed, other media and then NAMI specifics and then for families and just information here to help an individual.

- The NAMI is an extraordinary resource for people in need.

And I wanna also say that I know that if somebody shows up at a local affiliate of NAMI, they're gonna be embraced, they're gonna be hugged, they're gonna be taken in and welcomed and get the help that they need.

So between online, the book, the phone, and then local interactions, there's help out there for people who need to navigate this situation.

- There is help out there.

And I want to tell you, you asked me earlier, and I mentioned, young adults, but all of us now use this technology and I just wanted to share something with you that NAMI does.

And yes, if someone goes to a local affiliate, they are going to be embraced because we look at every person is we meet you where you are, and most of us have been where you are.

And I'll give you just this one, Jeff.

You got this technology, a person's walking down the street and they don't see the manhole cover.

They fall in there.

So this person's down there, there's no ladder for them to get out.

And this is just a quick visual.

I'll give you a part of our work is storytelling, quite frankly.

So let me share this story with you.

The man's down there in the hole there is a religious leader that passes by and says, "Hey."

the guy he looks up said, "Can you help me?"

He says, "I'll pray for you."

And he keeps going.

Next person goes by is a provider can offer a prescription or something like that.

Say, "I'll send something down for you."

The third person jumps the hole that's walking by and then the guy says, "Why did you jump in the hole?

Now we're both here."

And the guy says to him, he says, "No, I've been here.

I know how to get us out."

That's who NAMI is.

I've been here, I know how to get us out.

So I just wanted to share that little bit of a story there.

But I wanted to talk to you about this technology and if you hang in there with me, I'm gonna show you something.

Siri, I'm feeling depressed.

- [Siri] I'm sorry to hear that.

Talking to someone might help.

If you'd like, I can help you call a friend or family member or you can find help online at nami.org.

- Tremendous resource.

Tremendous resource.

And when you say meet people where they are, especially for younger people, this is what they use their cell phones.

So that is just another example of the resource that NAMI has.

Dan, I wanna thank you so much for the work you're doing with NAMI and for joining us today.

- No, thank you Jeff.

And we've known each other for a while and I tell you this is about leadership, tone and execution, the leadership that you've demonstrated over the years and how much you care and all that you bring to this.

It's just been fantastic to learn from you and to be a part of this community with you.

And thank you for giving NAMI this opportunity to be here today.

- Thank you.

(ambient music) The key message today for individuals and families is you're not alone and don't suffer in silence, accept help and guidance.

Remember with help, there is hope.

(ambient music) Do not suffer in silence.

With help, there is hope.

(ambient music) This program is brought to you in part by the American Psychiatric Association Foundation and the John and Polly Sparks Foundation.

(ambient music)