In this episode we have guest Deborah Gordon, author of The Health Care Consumer’s Manifesto, joining us to talk about her research into the mental healthcare marketplace. She’ll be discussing the mental healthcare market and how consumers “shop” for treatment, as well as if there’s a place for negotiating prices when it comes to therapy services. Following Deborah, we’re joined by Nancy Brooks, the executive director for NAMI in Louisville, Kentucky. Nancy will be telling us more about NAMI and its mission, and how you can get involved in your own community.
Welcome to Recovery Radio by Landmark Recovery with your host, Zach Crouch. In this program we’ll discuss the root causes and treatments of alcohol and substance addiction, speak with experts in related fields, and help navigate the road to recovery.
Now, here’s the host of Recovery Radio, Zach Crouch.
Zach: Hi. I’m Zach Crouch and you’re listening to Landmark Recovery Radio, your source for addiction and recovery news and knowledge. You can find us online wherever you get your podcasts and don’t forget to subscribe to get the most up-to-date information from leading experts.
We have guest Deborah Gordon joining us on the show today. Deborah Gordon has spent her career trying to level the playing field for health care consumers. She is the author of The Health Care Consumer’s Manifesto: How to Get the Most for your Money. Her work has appeared in JAMA Network Open, the Harvard Business Review blog, and USA Today.
Deb spent more than two decades in health care leadership roles including a Chief Marketing Officer role at a health plan in Massachusetts. She has degrees from both Brown University and the Harvard Business School.
Deb, it is a pleasure to have you on the show today.
Deb: Thank you so much for having me.
Zach: Starting off, I’m curious about your book The Health Care Manifesto. You’ve spent a lot of time it sounds like in different roles. What inspired you to write this book?
Deb: Sure. Because of those roles and the time I’ve spent inside the healthcare industry, I often get questions from people, really basic questions like what should I do. These could be educated, smart people who know how to do lots of things, but somehow when it comes to their healthcare, people just feel lost and overwhelmed. I wrote the book really for consumers to try to demystify the system and help people get out it what they need.
The other thing is that Americans now spend a trillion dollars every year out-of-pocket on our healthcare and our health insurance costs. To me, that should entitle us to get value and to get a system that works for us. At the same time, we don’t always get that value from our healthcare dollars. I wanted to expose for people sort of the human side of healthcare costs and then how each of us can claim, re-claim our claim, our economic power in healthcare.
Zach: It seems to me like almost an elementary point to bring this up when I ask the questions, but if we were to pay for most services that we are rendered by other vendors, etc., people, you name it, we would expect to have some solid product in return for our efforts or money or resources that are spent. What’s missing then with the healthcare system? Why is it that we’re, I would say failed so often?
Deb: I think that’s a great question and I think you’re totally right. In what other market or in what other place do you spend your money that you would accept not knowing what the price tag is or getting something that you’ve paid for that doesn’t work or doesn’t have the results you expected? Why is it that way?
I think it comes from the history of how healthcare in America was born, if you will. Our healthcare system is organized around doctors, hospitals, and employers and not really around us, the individuals. I think that’s part of it. There’s been a long history of catering to organizations, not individuals. That’s the first thing.
I think as a result individuals are not aware or as conscious of the fact that healthcare spending is our money. If we were plunking down that kind of money, a trillion dollars in other markets we’re probably aware that we are the customer, but somehow in healthcare in the doctor’s office with our insurance plan, we feel and I put myself in this category just much more passive or helpless. We don’t even really think of that money as our own.
Zach: It’s so true. I’m going to ask this question to you just to provide if you can some perspective for our listeners, can you expound it all on what a trillion dollars actually is? I know it’s a bunch of zeroes behind a certain number. Can you put any perspective on that for our listeners? How much money that actually is?
Deb: Yes. For example, it’s the size of the GDP of Indonesia which is a country with something I think like 260 million people. There’s that. It’s also only a little bit more than what we spend every year. It might be a little closer to home. It’s only a little bit more than what Americans spend every year on holiday shopping.
If you think about how many sales and promotions and extra hours, extended hours to get us into the store, and all kinds of accommodations to get our money, I personally don’t experience any of that when it comes to my healthcare dollars.
Zach: Right. Wow. It’s interesting you bring up the holiday season because that continues to get pushed back it seems like every year. We’re starting in September now.
I’m curious to hear from you as well. You mentioned that there’s been this sort of fundamental understanding at least that the health plans and healthcare has been catered less and less to individuals and more and more as you mentioned, hospitals, doctors, etc. What do you think is at risk for a shift to individuals?
Deb: If we shift to individuals, what do we lose?
Zach: What do we lose and what do we gain and what would be the problem with that shift if that were the case?
Deb: Yes, that’s a great question. Actually no one has asked me that question before and I always appreciate a chance to puzzle on a new angle here. I think that the thing that we lose, we in a broader sense is whenever we make a shift of economic power somebody gains and somebody loses. In my book, I advocate for consumers to sort of take control or step up and sort of demand value for their spending. We would have to take that control from someone. That would be the health plan or the hospital or the doctor.
I’m not anti-doctor. I’m actually married to a doctor. I’m a big fan and very dependent on the healthcare system just like anyone is. If we get sick, we need these guys to help us. I’m not trying to take something from them, but I do think there are a lot of financial interest embedded in how healthcare is practiced today. I guess what I’m calling for is a redistribution of that economic value in favor of consumers.
Zach: You’re probably familiar with our sector meaning the healthcare industry in terms of mental health and managed care.
It’s been my experience over the years that I’ve been in the field of addictions treatment is that the insurance company certify less and less days of treatment for people a lot of the time and prefer to move more towards an outpatient model when clear evidence among people who’d presented not just us, but to other treatment centers that outpatient treatment [Inaudible][08:46] people and to simply get something certified for say, 30 to 45 days which isn’t a lot for a lot of people that can really be cumbersome.
What I found to be true also is that the amount of resources dedicated to extend the person’s stay in a place like a treatment center it takes a lot of time and a lot of resources to just get that. That’s something I want to just, I’d love to hear any sort of thoughts you have on…do you see that getting better in the future or sort of we are [Inaudible][09:26]
Deb: I think there’s been a move across healthcare to push as you’re saying, push care to outpatient settings as much as possible because it’s a lot less expensive.
Deb: I think in general in a lot of categories you could safely say patients or consumers do not want extra, do not want to spend one extra day in the hospital. If they can go home, they want to go home.
I think what you’re pointing to is there are services especially here where actually in-patient is the appropriate level of care and the administrative burden just to get someone to a hospital bed or to be able to stay in a recovery setting that is appropriate is so much burden and it actually costs so much to the system and the individual in a way as well in terms of worry or hassle.
I don’t think there’s necessarily light at the end of the tunnel. I don’t think we’re headed in the right direction per se, but I think the most powerful force or leverage we collectively have is our voice. I think the more that we all, anyone who has a platform or an opinion can share the kind of recognition that not all care can be delivered effectively at home or outpatient and that mental illness, addiction, addiction recovery — these are conditions that can affect anyone that are rooted in biological disease in many cases.
We have sent people home I guess with chemotherapy and tried to do as much of that as we can out of the hospital, but I guess we wouldn’t expect someone to just sort of get better on their own. When someone does need to be hospitalized for cancer treatment, we typically, the insurance companies, the hospitals they typically do allow that.
I think what we really need to use our voices for is to elevate kind of regard for or kind of healthy respect for the mental illness and the diseases of the brain. I think if we can help raise almost like the awareness that these are real conditions that need treatments and can respond to treatment if it’s done right then I think we can thus force the industry to adapt the policies to the need.
I think that only happens if we really kind of shine a bright a light as possible on the needs of real people and almost universality of these diseases. There is no special category, only those people get sick this way. No, any of us can get sick this way. That’s what I think it will take to change the policies.
Zach: You brought up the most powerful thing that we have to offer is consumers of health plans and in taking advantage of the health services that are available to us in gaining traction is our voice. I’m curious to hear though from you. Do you think that that is enough to compete with the lobbyists, special interest groups that are creating legislation?
Deb: It’s a really good point. Whenever you threaten someone’s livelihood, there are very powerful interests that rise up to defend financial territory, let’s say. Here’s a capitalist, a business-minded answer to that which is the other powerful force to disrupt status quo is innovation and entrepreneurs and novel ways of delivering care or paying for care. I do think there is a lot of attention and awareness of opportunities in the healthcare space broadly and increasingly in mental healthcare as well.
I think where individuals can’t create change all by ourselves when we’re up against political forces or entrenched economic interest actually countervailing economic interest can rise through entrepreneurship and innovation.
Zach: Got it. My wife is a, she’s a therapist. She’s a licensed marriage and family therapist. You touched on the cost of therapy particularly in negotiating the cost of treatment. What are some insights that you’ve learned though when speaking to therapists about their thoughts on negotiating rates and maybe tips that you would recommend to consumers?
Deb: Sure. I interviewed at least a dozen therapists. They were really open with me about how they set their business practices and what motivates them. I can share maybe three things I learned from the therapists I interviewed. First, none of them felt like they charged as much as they could even as expensive as their rates are for some of us to afford. Many therapists felt like “I think the other guy down the street charges more than I do.”
In that, what I’ve learned was they have this desire to balance their need to earn a living and to feel respected and valued for their skills with compassion for patients and a desire to help people. Nobody goes into, I don’t think anyone, I’ve never encountered anyone who pursues a career in mental health care for the money. People come to it out of compassion and caring. That’s one I think to start with the premise that these are very good, well-intentioned people who do need to earn a living but care a lot about people.
Second, I learned that whether or not someone was willing to negotiate their fees it’s philosophical in a way. Some people felt like “Actually I don’t negotiate because I believe consistency is good or limits our good therapeutically;” whereas others felt like “I never want money to be the reason someone can’t get treatment from me.” There is sort of this wide range of feelings about negotiations that was not really about money, but was about kind of higher-order values.
Interestingly, the third thing I would say is they have flexibility. One downside of mental health care the way the system is set out is that so many practitioners operate outside of the health insurance system because of low reimbursement rates, hassle factors, there is this private market for mental health care so that’s that if you can’t afford to pay out-of-pocket.
What it does mean is those therapists who operate outside the insurance system have a lot of flexibility. I would probe when I interviewed them. What makes you willing to flex? For whom are you willing to negotiate your fees and when? I heard some very common themes.
Three things I can offer here. One is if they’re in an existing relationship with the patient, they were much more willing to be flexible than if someone is calling them out of the blue and their schedule is booked anyway. It’s easier to say no to someone who’s new. It’s much harder to say no they’re already invested in.
Two, I really heard this deep desire to deliver value. Therapists who felt like the patient was benefitting from their services were actually more willing to negotiate or slide their fee if that patient was having a financial challenge.
Third, there are some pragmatic things. Can they afford to flex? Is their schedule full? That works both ways. “I don’t need to flex because my schedule’s full.” On the other hand, “I have a roster of paying clients and here you are in front of me with a financial strain or problem. Okay, I can flex because I’m not flexing for everyone, but for you I can.” It kind of works both ways.
There is sort of a level, the low which they knew, “If I go too far, I will resent my patient.” That’s not good therapeutically. It might help them financially, but it won’t help the therapeutic relationship.
There is really this interesting consideration, careful consideration to the dynamics of what makes for a good therapeutic relationship, what makes for a healthy, open conversation about cost, what can I live with, what can they live with. In general, I heard a lot of desire to find a sweet spot where patients they care about…
Zach: A balance.
Deb: Yes, they really wanted to continue delivering care that helps people.
Zach: Yes. It is an interesting sort of balancing act I think for a lot of folks because I’ll use my wife as an example. She does have quite a few people that she sees who have it’s a plan in Kentucky called Passport. It’s a Medicaid product carrier. She’s also got people that can pay privately and are happy to do that. I will say that obviously the rates for reimbursement for the Medicaid are quite a bit lower.
That being said, she probably spends just on the paperwork alone as much time on that as she does in session for every hour that she sees somebody. There’s no guarantee a lot of the times that she’s going to get reimbursed in an efficient manner meaning that it comes back…you have a private payday pay right there most of the time, but for her and I’ve heard this from other people, not just people who are accepting Passport but insurance in general is that there are a lot of hoops that people have to jump through to just get reimbursed.
If that’s the case as the practice is centered around accepting insurance, it can make it really challenging.
Deb: I heard that, too. Actually that hassle factor or that burden only to find out you don’t even get a full reimbursement or the rate you’re going to all that trouble to get reimbursed are pretty low rates to real disincentive to therapists. That’s why so many operate outside or as largely outside the insurance system. It’s definitely part of the problem. I don’t understand. We have this vast need for mental healthcare.
Deb: This really difficult system for the professionals we rely on to get paid fairly. I worked for a health plan for a lot of years and we knew, for a Medicaid plan actually and we knew that our members, the most costly members, the most complex members had a disproportionate mental health burden so they might have had medical issues and mental health issues as well.
Zach: Typically, Deb those people are showing up to the most costly services like example the ER a lot, right?
Deb: Right, exactly. Instead if you could make mental health services more readily available, if you fix these supply and demand issues where providers were more willing to accept those insurances because they were more reimbursing their rates and doing so with less hassle then folks could get the care in the community or in a lower-cost setting.
When you make it so hard for both the suppliers, the therapists or the other providers and the consumer to get what they need, that’s how you wind up with a rationing out of both expense and kind of a mismatch of supply and demand, if you will or capacity and the need. I think there’s a lot of, a lot we need to do to make the system work better on all sides. This is not just a consumer issue. It’s also a provider issue.
Zach: Can you speak at all maybe briefly to why access to mental healthcare is really so uneven?
Deb: I think the roots of this are in actually in bias against the perception of mental illness as not real or not scientifically-based and treatments for mental illness have lagged. They’re catching up. There’s so much genetic research happening…
Zach: More data available.
Deb: Like adhesion development…exactly. With sort of move to recognize and understand the biological basis for brain disease, I think this is changing and will still continue to change, but I think historically psychiatry, other forms of mental healthcare or other disciplines within mental healthcare were not seen as scientific or data-driven. I think it was easier as a result to sort of dismiss mental healthcare as optional or even a luxury. Actually for some people it is.
There’s a difference between improving a relationship through short-term therapy compared to a schizophrenia diagnosis or a bipolar disorder diagnosis or addiction or depression. I think if you have depression you know it’s not like “I’ll just go to the gym or I’ll just try a little harder to feel better.” No, it’s a disease and it’s not something you can just wish away.
Zach: Just kill. Right, exactly.
Deb: Yes. I think that the more we can understand that…
Zach: The educational piece is so huge.
Deb: Yes, but I think that’s why. If you view mental healthcare as optional or not serious or not biologically-based, you can then dismiss it, pay less for it, treat the providers of it less well or less fairly and make it harder to access for anyone who doesn’t have resources. I think we have been in this downward cycle.
Today we have a lot of data like we said. We know that people with unmet mental healthcare needs cost the system more. There’s the moral argument. We should treat people well because they need help or they need care. There’s also an economic argument, just cost the system more. If you’re so inclined to focus on the numbers, the numbers support improving access to mental healthcare absolutely.
Zach: If that’s the case, if we know that then why not because I think that the Parity Act did a lot for people. What other steps are we missing right now from your perspective to bridge that gap?
Deb: Yes. I think there’s still stigma. I think social stigma around mental illness and seeking mental healthcare I think we’re making a lot of progress in that regard by talking about it, by celebrities sharing their stories and kind of normalizing these ideas that if you need help, it’s not a personal failing. I think we’re long past those ideas, but we still have some room to improve that recognition. I think that’s one.
I think that the other issue is that the way the health insurance system works. Any increase in cost today is bad for the health insurer. I can say this. I worked for one. Even the long-term improving access to mental healthcare is good for overall health and medical expend. If it adds cost today which increasing reimbursement for mental healthcare would add cost today, that’s not good for a health insurer.
I think we need to disrupt that system either through regulation if you believe in it or if you believe it will happen…
Zach: It’s such a short-term perspective to have.
Deb: It is. It is. Like in Medicaid for example, the average member at least in Massachusetts when I worked in the Medicaid plan is only nine months. We did a lot of programming to help people because that was our mission, but economically speaking it might not pay off. For example, if I invest in a long-term strategy, I’ll just use an example to help people stop smoking. In 20 years we might see the improvement in that person’s health, but in nine months we’re not going to see it.
I think mental healthcare fits into that example quite well. The long-term benefits are certainly going to be there, but who has to pay in the meantime? In the short-term nobody wants to pay for it.
Zach: I’m curious to hear if you have a thought on this. I was thinking about if they took more, they the insurance companies as an example. If they took more of a long-term approach and began to let’s just say pay out more, reimburse more for mental health, provide more services, etc., do you see, is there a fair and equitable incentive for the insurance companies should they choose to take that move?
Deb: That is the perfect question. You know where I think that incentive would come from is we started this conversation with the system wasn’t really designed around individuals. It was designed around our employers. If you go to work with a mental illness or with a mental health problem, you’re probably not doing your best work or living up to your potential. That hurts you. It also hurts your employer.
I do think employers are starting to get into this game and have immense influence with health insurers. That economic power is very clear to the insurers. If an employer said to their insurance provider, “We need robust mental healthcare benefits and otherwise, we’re going to shop our business around,” there’s your financial incentive if that were going to happen today.
Zach: Very good. It sounds to me like you’re certainly on board with mental health, not really good mental health, not really being an option. It is so necessary and it’s I think something that’s often looked at like a gym membership where it’s there. Maybe I’ll take advantage of it. Maybe I won’t.
Deb: Right. I think if you have experienced or you know someone who has experienced mental illness, you know it is not going to be solved as a gym or at a salon. It’s not equivalent; that there is real biological basis and there are increasingly real treatments, but we need to be willing to pay for them.
Zach: What we are already paying for.
Deb: Exactly right, exactly. Exactly.
Zach: Deborah, I really look forward to diving into your book. If our folks are interested in learning more about the book, where would they need to go?
Deb: They can just go on Amazon, The Health Care Consumer’s Manifesto.
Zach: Very good. Do you have a website or anything like that that we should know about as well?
Deb: Sure. It’s very creatively named. It’s debgordon.com. deb G-O-R-D-O-N.com.
Zach: Fantastic. Very good. Thank you so much, Deb for coming on the show today. We really appreciate this.
Deb: Thanks for having me, great discussion. Thanks for all the work you’re doing.
Zach: Thank you.
If you know someone struggling with an addiction and are searching for answers, visit us at landmarkrecovery.com to learn more about substance abuse programs that are both saving lives and empowering families.
Until next week, I’m Zach Crouch with Landmark Recovery Radio.
Zach: Hi. I’m Zach Crouch and you’re listening to Landmark Recovery Radio, your source for addiction and recovery news and knowledge. You can find us online wherever you get your podcasts and don’t forget to subscribe to get the most up-to-date information from leading experts.
We have guest Nancy Brooks joining us on the show today. Nancy is the Executive Director for the National Alliance on Mental Health Illness or NAMI in Louisville, Kentucky. In addition to her work with NAMI, Nancy is also a member of the Board of Trustees for U of L Peace Hospital, a member of the Governance Board of Central State Hospital and also a member of the Louisville Health Advisory Board.
Nancy’s going to be telling us about the life-saving work that NAMI does every day. I’m very excited to hear how you also can get involved in your community with this organization.
Nancy, thank you so much for joining us on the show today.
Nancy: Thank you for having me.
Zach: If you don’t mind, tell us a bit about NAMI and also its mission.
Nancy: Okay. NAMI or NAMI Louisville as we’re referred to is the local affiliate of the National Alliance on Mental Illness as you stated. That organization is based out of the Virginia area, DC and they provide numerous program developments that they offer to the different affiliates. Each affiliate will somewhat choose what programming fits their community.
In Louisville, we offer particularly support groups, education, classes, and presentation opportunities for a variety of individuals from those who have mental health conditions to family members to school-age children to workplace presentations. Generally, our advocacy is another side of what we do where we work with other leaders in the mental health community to promote the work that we’re doing to the government officials so that funding stays fluid and that points of interest gets attended to.
Zach: Sure. I’m kind of curious on that as you brought that up especially at the national level when they decide a new program is needed in a particular area even. What’s the sort of thought process that goes into developing a new program at a national level and what informs that decision to start a new program?
Nancy: Some of it will be feedbacks from the affiliates. There are thousands of affiliates in the US in different cities and we see needs sometimes that others don’t. This gives me an opportunity here to approach a program we’ve been developing here which is our Youth Advisory Council. We solicited high schools and colleges in the area and came up with a 24-person committee of youth who came together and decided on three different goals per youth programming in our community.
None of those programs exist at the national level because they focus their attention on 18 and older. What we’ve kind of found is that that presents a slight, it presents a hindrance and an opportunity and the opportunity is that we may come up with something in this group that seems so solid and so important that we reach out to national and suggest that they help us develop our research-driven programs.
On the other side, it may be that we take what they already have and turn it into a youth-oriented program that we can offer in our community.
Zach: Got it, got it. I guess for me it kind of begs that question. Was there anything going on locally that you guys saw in your local affiliation in Louisville that informed your decision to start a Youth Advisory Committee?
Nancy: Yes. I think it was mainly developed through my relationships with some of the schools. JDPS has several staff members who are leading their psychology and counseling programs who have very strong relationships with and they share their needs. Assumption High School also has a very prominent mental health club and I was aware of the work that they were doing as well. Manual has a group that is very strong. Chip Dayton High School has a group that’s very strong.
The bottom-line is youth are interested in mental health. How can we approach that and offer them services? I just speak with staff at Ethics Center at one point where we said what are the programming needs there. They said a lot of it really stems from the fact that without parents’ consent you can’t get certain services to youth. We were all finding the same boundaries that have been barriers, but it’s an opportunity to listen to the youth and help them help us identify what would work for them.
Nancy: There’s another program not just to switch gears too far, but two years ago at the national NAMI convention they rolled out a program called the Stigma Free Workplace. NAMI Louisville decided that was something that we felt we could generate a very positive program here in Louisville. We took about nine months maybe redesigning the program a bit to fit our needs and make it a little bit more dynamic and then rolled it out in January as a new human resource employer benefit.
The program is designed to work directly with the staff and leadership of a business organization offering not just our resources but the full-on resources of our community in mental health providers back to these business leaders for their employees who are in need or their employees’ family members who are in need. Let’s face it. If you’re a parent and your child is suffering, you’re not going to be able to go to work 24/7 either.
Zach: A hundred percent.
Zach: That’s fantastic. I’m kind of curious. Going back to the piece around the youth and you brought up an interesting point. I want to hear your take on this. You said that youth today are interested in mental health. Is that something in your opinion or your research, etc. that that’s novel, that that’s something that’s not been the case maybe in even a couple of decades or more in the past?
Nancy: Yes. To answer that there’s a couple dynamics that have happened in the past; some of them are cultural and some of them are just based on the time and history, but many groups have historically wanted to cover up mental health conditions in their family. They have tried to say, “Pull yourself up by your bootstraps. You’ll be okay.”
Nancy: What has happened is that through the voice of the individuals and through the voice of the families to approach groups like NAMI and learned more about mental health and its causes and its cures, they have focused their attention in a way that allows the communication to start. I think if you look at mid-aged people, many of us do talk about mental health in a different way than our elders do.
The youth are talking about it in a different way than the rest of us are which I think is much more open. They’re much more willing to tell you, “I’m medicated,” or that “I see a therapist.” They’re much more informed on how to communicate if you think someone is in danger of attempting suicide. Those are things that have we have spent through the education of these students and through the fact that their stigma barriers are maybe not as high as older folks.
Zach: Sure. That makes a lot of sense. I can tell you personally at least. When I was between my junior year and senior year at Mayo High School here in Louisville, Kentucky, my folks were going through a separation and it was rough. It was really challenging. There was a counselor. I think her last name or first name was Meredith.
In any event, she…I wouldn’t go so far as to say that she saved my life but maybe she did. She provided something for me at that time in my life that I needed really badly and all I had to do was walk down the hall.
Nancy: Yes, yes. Again, when you talk about it reminds me of one of my mantras in mental health that there’s absolutely no one who has never experienced a psychological injury. Not all of us have experienced severe trauma, but those psychological injuries sit in our brain and we pick at them and we don’t resolve them.
If we were picking at a wound, a physical wound in the way we pick at our mental wounds people would adjust and say you need to go see a doctor and yet with our mental wounds we often are afraid to do so for fear of what that will imply about us, but we’re not resolving those deep-rooted traumas and injuries if we’re not addressing them in some way.
Nancy: I think that’s one of the things that either understanding that many adults did not.
Zach: Yes. Right. I think it’s certainly at least in terms of where I was in that experience in high school, what I remember was she just was able to provide a space for me, a safe space to just go even if it was 30 minutes every other week to talk about kind of what was going on that’s what I needed. We didn’t go through my history or anything like that and quite frankly I probably wouldn’t have found it super helpful to dig deep down and start sharing really personal stuff.
She provided that space and I just want to give a big shout-out to all the school counselors.
Nancy: That’s right. I’m so glad that JDPS has done what they have moved to do this year about providing more true psychological counselors to their school district. It will make a big difference in the lives of those students and it’s overdue.
Zach: Yes. Kind of shifting gears though in terms of your organization and your role, tell us what a day in the life looks like for you?
Nancy: One of the main things that I focus on throughout the week whether I like it or not is the funding aspect. For us to provide programs free to the folks in our community which we do and it’s very rare to find free services, we need to be out there meeting with donors, writing grants, looking for those opportunities during a fund-raising, all that.
The reality is that I have oversight on every aspect of the organization. When we have a program that is not running for example the way that it should, I need to dig in, find out is it related to the informational aspect of what the individual leading the group needs to know or is it something that we need to empower them in a different way. The more that we do that and the better that we do that the more success our programs will be.
In addition to that, I’m watching out for all these different programs, making sure that we’re meeting the businesses to talk about Stigma Free, making sure that we’re working with these programs and making sure that we are creating expectable presentations to go into the school district or go into a church and communicate the offerings that are available.
Quite frankly there’s really no normal day, but a normal day is varied to a great degree in the types of things that I’ll touch on and work with.
Zach: How does NAMI stay funded, even your local affiliates here? How do you guys stay afloat? What are some things that you guys do to continue your mission in your organization?
Nancy: As far as funding goes, there’s no trickle-down funding from the national or state directly to NAMI Louisville. We’re kind of dependent on the benevolence of our own community. We will host various events. We hosted four of them last year. Of course this year we’re challenged with the virtual aspect of what that might be like.
Nancy: We work with different groups to see if we can offer something to them that they’re willing to donate back. We certainly write a lot of grants, but a lot of what I do I do for free. I never go out saying, “I’m going to come to your school. It’s going to cost you $500.” I just go to schools. I just talk to the 40 teachers and I make sure they know what they need to know to be the best teachers they can be for that grade school or middle school or high school.
Zach: That’s amazing.
Nancy: I am tenth grade-based in our community will always see the need for the work that we do. We’ll continue to be as generous as they can be.
Zach: I don’t want to date our podcast, but we are in the middle of a pandemic right now and especially right now where people are at home all the time so all those issues that were there under the surface that you could probably push off, you could find other things to do to distract you. Those are things now that are coming to the surface for a lot of families. Thank God for an organization like yours.
Nancy: You’re absolutely right. One of the things that we’d noticed is that we need to potentially create some sort of presentation that can go out virtually, that can be offered at whatever type of virtual platform so that those who are in that sort of situation know that there’s someone they can reach out to or that those who have loved ones of individuals who seems to be having some symptoms that they didn’t have before the pandemic can be referred to the right resources because that is definitely going to have its impact.
Everyone who is in a bad environment or who is depressed over loss or loneliness they’re all going to have an impact.
Zach: Nancy, I hate to say this but it’s true. We, I think on a national level certainly here locally, too, we’ve seen an uptick in domestic violence.
Nancy: Yes, yes and a higher call-in for those who are considering suicide, I hear that’s going up. I think PTSD will be a factor and the extreme result of trauma. There’s just a lot going on and we’re all trying to figure out what that looks like. From a sociological perspective someday we’ll look back and go, “Oh, that’s what it looks like.” Right now we’re just guessing.
Nancy: We’re just guessing.
Zach: Tell us and the audience what are some of the events that NAMI holds in the local community here?
Nancy: Our main four events are that every year our biggest event is always our walk. It’s the Step Forward for Mental Health Walk and we host it down on Waterfront Park at the Harbor Lawn there. Usually we have over 400 people come down. There are vendors. There’s food and there’s music and there’s just really great opportunity to hear different people speak on why they walked.
Unfortunately this year we’re still in a tentative situation. We have worked last year with the City of Louisville to designate the first Saturday in June which is always our walk day to be Mental Health Awareness Day in Louisville. However, this year we’re not going to be able to hold it on June 6.
Zach: I hate that.
Nancy: Probably until September with our fingers crossed that that will happen, but we are launching more a virtual walk. I’m really glad that you brought that up because people can go to our website www.namilouisville.org and sign up for that virtual walk. The donations are some of the support that we need. We really hope to just bring the community together throughout May and celebrate Mental Health Awareness Month and generally have the time together as a community supporting this cause.
Zach: Awesome. It’s just fantastic to hear that. You mentioned that’s one of four. What are the other three that you have?
Nancy: The other three that we do typically at the end of June we believe that’s going to be postponed. We have done, this would be our second so it was just last year, but A Taste for Life with Four Peg Beer Lounge over at German town. It is ethnic ordained driven prevention event. Last year they had 13 different food providers come out. We had 27 people already signed up this year when COVID came about.
We had a Street Walk in addition Kid Foundation had joined us, their Exercise Prevention Awareness group. It’s a great event; again, music and food and fun that we just hope we get a chance to have.
We also have an Annual Honors Summit which is sort of an expansion on our membership meeting where we bring together not only all of our members but anyone in the community who’s interested in hearing the keynote speaker who was slated for April 15th to be Governor Andy Beshear. Unfortunately…
Zach: He’s kind of busy right now. Yes.
Nancy: Yes. We didn’t get to have that either, but we’re hoping that his celebrity status and a hopeful ability to come at a later date will still pan out.
Zach: Will still come through, yes.
Nancy: Yes. We also have Julie Lockyer coming and then we give awards to our key leaders like someone who spends their lifetime volunteering for us and someone who’s doing a whole lot right now, that sort of thing. Food was going to be provided by Ramsey’s. It was going to be a good time that we just hope we can still have that.
Lastly, we partner with a gentleman named Matt Streck. He lost his wife to suicide in a golf outing in the fall. That is called the Leslie’s Hope Golf Scramble. It’s really a great opportunity. He brings most of the players and eventers together and just give NAMI an opportunity to share the work that we do. Again it’s hopeful that we’d be able to have that in the fall. I think that one’s the most likely to be held in its normal status because I heard that golf courses are running so long as you’re not in parks together.
Zach: Right. I got to tell you. You talk about mental health. Golf for me personally is sort of my sanity-saver right now because you’re right. Golf courses are still open. There’s just something about being outside for four or five hours at a time and just being in nature. For a lot of people that’s hiking parks. For me it’s golf.
Nancy: Right, right. I even just went out on Sunday to walk through Audubon Park and look at the dogwoods just because I had to be someplace different. I cannot just keep walking the same routes. I need to go somewhere different. Again, yes there’s a lot of self-care that needs to happen in these times. I’m not convinced everyone knows how to do that.
Zach: Yes. If someone does find themselves in a challenging or sort of precarious situation with their mental health, can you tell us a bit more about the NAMI helpline?
Nancy: Yes. We have an employee and she works helplines all week long, but she works for us part-time and Centerstone part-time on their crisis line. She’s extremely knowledgeable about resources. We check the calls every day even remotely from where we are and we make sure that they get their way to her.
What she will do is she will talk to the person individually about their particular need and then through our resource list which is all on the website as well, she will track through that first thing. Is there some place that is perfect fit for this person? We will go regionally if we have to.
You mentioned substance use disorder earlier. There’s times when the best place for someone is not in Louisville. There’s a place for someone somewhere else that they may need long-term care. We try to stay in touch with some of those places in our region. Mostly we resource right out to folks like yourself that are doing good work in the community and that can help that individual.
Zach: That’s great. Yes, that’s fantastic. To your point, our local community is here. If people do want to get involved with NAMI and its work, how can people do that?
Nancy: That is probably the most important need we have. No matter how much I know about NAMI, I am never going to be able to offer what an individual can offer from their life experience. All of our programs are based on Q lit programming. We do have to wait until the state or national creates the training that identify potential volunteers who would be willing to lead a support group or lead an educational class.
Those are the backbone of our organization. Those people are greatly needed. We are always looking for volunteers who are other opportunities as well. During our events we like to have a slew of people helping us make it look seamless. We like to offer people work within the office. I have an intern at the summer who is working on research projects.
I’ve had people reach out over the time period of work-from-home saying, “I’ve got extra time. I’m really interested in what you guys are doing.” Sometimes we have to be creative. What is it we can do? I always talk to the individual myself and determine the best volunteer opportunity for them.
Zach: You can help them if they aren’t really sure what they would maybe be good at or interested in, for that matter. You could help them a little bit in figuring that out.
Nancy: That’s absolutely right. Some people are better positioned to do certain work so if I can find somebody who could fill a gap that’s even better. Sometimes someone comes to us with a strong knowledge in a certain area that we need.
Zach: I have a follow-up question about those groups, those support groups that you brought up. If people are interested in that, do they need to be qualified in any particular way? Do they need to have a degree or anything like that? Okay, good.
Nancy: No. The qualifications again are all about being a peer. If you want to lead a connection support group, that’s for individuals with their own mental health conditions then you have to have experience, a personal experience with mental health. If you want to be a family-to-family education class teacher then you would be most likely any family member of someone who has a mental health condition.
One thing I like to remind people of at this point is that mental health conditions don’t have to necessarily be serious or something that you have medication for. They can be something that has truly affected the life of that individual. You can come to this with whatever is affecting your family and we can help you find the right place, but it really helps our groups to have those peers involved in the teaching and the support so that they can relate to those in the class.
Zach: Makes a lot of sense. Nancy, this has been a very informative and I’m just so grateful to have on as a guest to hear about what your organization does. Again, if people do want to get involved what’s the website that they can choose to go to?
Nancy: Yes. Again, we’re also very grateful to be invited to speak with you. The best way to reach us is either by the website which is www.namilouisville.org, namilouisville.org. We can also catch you through the phone at (502)588-2008. We know not everyone is involved in technology and as we recognize I think at this time and history that the elderly may be particularly lonely and vulnerable. If they want to give us a call, that’s absolutely perfect.
Zach: Appreciate that information.
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Until next week, I’m Zach Crouch with Landmark Recovery Radio.
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May 21, 2020
Posted in: Podcast