Tony Mantor: Why Not Me ? - Janet Hays: Healing Minds NOLA journey to reform mental health systems

Episode Date: July 2, 2025

Janet Hayes shares her journey as a severe mental illness advocate reshaping New Orleans through innovative care systems for those with serious mental health challenges. • Started advocacy after Hurricane Katrina when untreated mental illness led to criminalization • Witnessed a friend die in custody due to inadequate mental health and medical care • Founded Healing Minds NOLA to create a "one-stop shop" for mental health care • Successfully led implementation of Assistive Outpatient Treatment courts in Louisiana • Working to reform the "15-day rule" limiting psychiatric hospitalization under Medicaid • Advocates need to understand their specific state systems rather than applying generic solutions • Louisiana has adequate psychiatric bed capacity but lacks long-term continuity of care • Policy barriers, not just funding issues, prevent effective treatment for severe mental illness • Ideological positions often prevent pragmatic solutions that could help vulnerable individuals • Advocates are more effective when they understand local systems and speak from experience https://whynotme.world intro/outro music written by T. Wild Why Not me music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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Hi, I'm Tony Mantor. Welcome to Why Not Me embracing autism and mental health worldwide. Joining us today is Janet Hayes. She's a passionate mental health advocate and is reshaping New Orleans by pushing for innovative, compassionate care for those with serious mental illness. We'll explore her bold mission to decriminalize mental health challenges, close gaps in treatment, and build a stronger, more caring community. She has a wealth of information and we're very happy to have her join us today. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors.

Thanks for coming on. Hi, thank you. Thanks for the invite. Oh, it's my pleasure. Let's start off with what you do. So I like to call myself a severe mental illness advocate more than or an advocate for people with severe mental illness more than mental health, because as your listeners know, there is a distinction between those things. I got involved in kind of a weird way. I don't have a family member or someone I'm close to that is struggling with severe mental illness, but I'm a justice advocate.

And so it was really the injustices that happened to folks with no fault diseases that piqued my interest. And in particular, so I was living in the New Orleans region during Hurricane Katrina. And after that storm, we saw a huge uptick in people with severe mental illness that had nowhere to go. there was no treatment, there were just lack of providers. And they started being channeled and funneled into the criminal justice system. Homelessness was increasing and all of these tragedies that we hear on a day-to-day basis associated with people who aren't getting care. And it was just more than I could live with as someone who has the ability and the resources at the time to step up and fight for these folks. I felt like it was just compelled me to get involved and try to help fix

systems to better serve folks who, again, have no fault illnesses. Yeah, so I'm sure before you got into it, you had some understanding of what was going on, but maybe not completely. So once you dove in, what are some of the things you did to create more advocacy? Yeah, and I think not really. I think I was like most people, what I was seeing around me, I didn't understand really from the root causes of what drives these problems. I was more on the, I did a lot of activism and a lot of advocacy on other issues, economic issues, criminal justice issues, but not really directly working with the population of people with severe mental illness. So it wasn't until I had a friend who ended up in the criminal justice

system who had a psychiatric episode. She also had asthma. She'd gone for help at a hospital and essentially refused treatment due to an insurance issue. Ended up in jail. And from there, she was moved into, in New Orleans, the old jail was called the House of Detention, and the 10th floor was the mental health floor and horrible things happened there. Sure. And she was having an asthma attack and tied down in five-point restraints, and she ended up collapsing. And they sent her to the hospital where she died. And that was my first real entry into the realm where I live now. And we had a mutual friend who let me know that there was a group advocating to reopen our large.

state hospital or psychiatric hospital in the area that cared for people with severe mental illness that had been closed. And I got involved in helping them fight to reopen that hospital. Well, we lost later on. There was a new hospital that was built in this place. But later on, I advocated that that building be reused for the purposes of mental health care and research as a center of excellence to fill in these gaps of lack of beds, lack of continuity of care, lack of continuity of communication. You know, these lack of crisis beds that at the time we didn't have. And so in proposing this redevelopment project, all of a sudden I'm wearing my developer hat, right? As if I'm a developer, just keep putting on different hats. Sure, whatever works. In making this proposal, then I had to figure out,

well, how am I going to fill the space and how am I going to pay for it? And so that's when I realized the barriers that exist to get people the kind of help they need to prevent these crises we see all the time. So that was around the same time as Representative Tim Murphy, who I know you've had on the show, was introducing his Helping Families and Mental Health Crisis Act. And so I was interested in that because there were some, I wanted to know what provisions were in this bill that would help operate, make this project that I proposed, this one stop shop operational. Okay, what happened next? So I called his office up in D.C. and I ended up speaking with one of his legislative assistants who let me know some of the provisions in the bill. that would help. And one of those was repeal of the institutional for mental diseases exclusion, which essentially prohibits federal Medicaid from reimbursing psych facilities with more than 16 beds.

Well, I was talking about a more than 16 bed facility. And so in order to make it work, we would have to remove that exclusion. So that was something that I was passionate about working toward or helping with, and I joined national advocacy groups and also met DJ Jaffe at that time and started getting involved in his projects to advocate for removal to barriers to severe mental illness. And the rest is kind of history. That's good information. So what did you do next? There were some other provisions in that bill as well that made a lot of sense to me, including HIPAA reform, right? So information, the prohibitions on sharing information for people who have illness, which makes no sense to me because we don't have those same. I mean, there are

There are rules on the physical health side, but nobody pays attention to them. It's only on the mental health side. So that's what drove me, I guess, into policy, looking at creating my own nonprofit organization to kind of mirror what was happening nationally and to focus in on some things going on in my own state that I wanted to see reformed. That's how that happened. And then, of course, once you get into this space, you start getting calls. People find out about you.

They're impacted. They have severely mentally ill-loved ones, and they're in these same situations as everyone across the country. So I started to collect other advocates, and we've done some good work. Well, I'll stop there, but because I don't want to flood you. I don't want to hit you with a fire hose of information at one time, but it's some good projects and some policy changes that I was able to get done as an advocate. That's great, and it's not overload. It's good to hear. Now, you started your own nonprofit, right? I started my own nonprofit organization. It actually just began, it began, as I mentioned this one-stop shop proposal. Okay.

I began to submit that to the state as something. I felt that it should be submitted under the name of an organization rather than a person. Sure, I get that. Or some of the groups that I'd been affiliated with in the past, where there was a lot of kind of baggage that left over from those efforts that created a lot of bad feelings on both sides. And I wanted to separate myself from that. I wanted to start fresh and say, hey, you know, I don't want to go back to.

these old fights we were having. I want to put that aside. Let's move forward together on these bipartisan issues that we have. We share concerns on. That sounds like a great idea. The day before I submitted the proposal, I was on the internet trying to figure out, actually, before Healing Minds Nola, I'd chosen a different name, but it was unavailable. Of course, I'm like looking to see what's available. There was already a healing minds, but no Healing Minds Nola. And the Gmail account, the Gmail name was free. So that's how Heal. Minesinola was born so that I could submit this proposal to the state. Nice.

And then it was later on because of the interest that generated, that I became more structured and decided to apply for 501C3 status so we could start fundraising to grow the organization. And that's it, really. That's a great story. So basically, you started out as a foundation. As a corporation, yes. Corporation. Okay, I get it.

You said once it all started, that's when the floodgates opened up. So what kind of response was you getting and where was it coming from? How did you get it? So a lot of the groups I'd worked with previously to starting the nonprofit were people who were impacted. So I moved to Louisiana to be as a recording engineering producer, which put me really in that space with a lot of artists, right? Recording artists, musicians, people in these cultural spaces who really are generally under resource. they're dependent on Medicaid and free services and it's cash economy and they're hustling. And so this is a population that was severely impacted after Hurricane Katrina when all services went down. So those folks were already there. So when I started the nonprofit, it was just an

anchor for folks to come to that were already, who I already knew and I'd already worked with. So I already had a pretty good base of people who I'd worked with previously that understood. the need for, you know, revitalizing or to restoring, and they were very passionate about it. That was just a kind of an organic evolution that happened, really, previous work that I'd done. That's great. So when it started and it started picking up, you decided to turn it into a nonprofit. As in everything, you have bumps in the road. What were some of the bumps in the road that came across that you had to work around? Oh, these bumps never started. Stop.

Yeah, that's true. Some are bigger than others. We have huge potholes in our city that you can fall into if you're not careful. So I guess funding is the number one barrier. And then finding people who are qualified, who have the knowledge, institutional, knowledge, and understanding of the policy barriers in the system to be able to fill in these positions that, you know, normally I'm taking care of because I'm really the only one that has the amount of knowledge on the legal barriers for these folks. So even when I'm talking with doctors and I'm talking to insurance companies, I'm talking to lawyers, judges, sheriffs, EMS, families.

And, you know, they're all shocked to know some of the things that I'm letting them know about legal rules and provisions that are creating these human log jams and backlogs to the streets and so on. So it's not an easy, so the realm we live in, we were talking about this before the podcast started. I mean, some of the issues that we deal with are just so complicated and so complex. And, you know, I think that's a part of the reason why people don't want to touch them. Like policymakers, they're like, we understand there's a problem. We get that, you know, some stuff, but it's too much. You know, I'm not going to touch it because it's too big. And I want to deal with low-hanging fruit. I'm a politician. I need to get stuff done to make my mark in the community so I can move on to the next position or whatever. So it's really, it's hard. It's hard. It's hard to. make the work we do simple enough for people to understand. And the people that really understand it are the people who are living with it, right? So our biggest group of advocate or of people involved with Healing Minds and Ola are family members. They're doing the day-to-day.

They understand. You don't necessarily understand why, but they understand the problems like no one else. Yeah. Unfortunately, it has a certain stigma attached to it. And unless you're living with it, you don't understand it. the only way of getting that cast aside is get understanding. Right. The perfect example of that is me.

Before I started this podcast, I absolutely knew nothing about autism. Then as it grew and evolved, now I'm including anything that falls under the mental health umbrella. And I'm learning. I'm talking with advocates. I'm talking with CIT trainers. I'm talking with people that have lived experiences. I'm talking with everybody that's informing and telling their stories. So the more I hear it, the more I understand, even though another will completely understand because I'm not living it.

So we just have to continue to put the word out there so that the average person that listen to this podcast or hear something on the news, they start to ask questions so that they want to know more and understand more about mental health and everything that goes with it. Yeah, that's right. There's a lack of understanding about what drives homelessness. It's not a homogenous problem, right? So the demographic, it's not one demographic. The homeless is made up of so many different cohorts, population cohorts, that are struggling with different things. I mean, maybe a person's just poor and need housing.

Maybe because they've been homeless for a while, they start to self-medicate, you know, and they do the things that a lot of us would do to cope. And maybe they develop an addiction or maybe they don't. But then you do have, I mean, I can tell you, and I keep telling policymakers, I can tell you that without the work that we do and I got involved. with starting a court with a judge, which I'll get into, but without doing the work that we do, a lot of the, I mean, the homeless population would increase because a lot of the reason that our folks are not homeless is because they have a caregiver. Right. But that person is not going to

live forever. And so, I mean, I'm screaming at the state to say, look, people aren't interested in finding out the roots of the problems. All our policies are reactionary. We're dealing with after the problem, right? After the disaster happens, now we're cleaning it up. There's just such little interest in working to prevent the problems where they start and get to the roots of things and look at the long-term trajectory rather than dealing with just what's happening right now, right in front of us, getting people to, you know, getting them to think this way, getting them to sort of modify their thinking is a struggle in itself. So you mentioned in changing their thinking and getting to other things.

Let's address that. What are some of the things you're working on and how is it going? Yeah. So one of the things that we've been really successful with in Louisiana is implementing assistive outpatient treatment courts in the state. I said assistive, which might be a little weird for some people who are listening who know these kinds of programs as assisted outpatient treatment. But in Louisiana, the law that we got passed is named assistive outpatient treatment. So like I said, when I got involved in national advocacy to look at what I could do to help remove barriers

that would benefit us in one-stop shop that I'm trying to create and now full continuity of coordinated systems of care and communication, assistive outpatient treatment was really getting a lot of attention at the time. This was around 2017 or so. The federal government had just passed the Cures Act with a number of provisions in the Helping Families and Mental Health Crisis Act, including appropriating funding for assistive outpatient treatment court programs. And so this funding came through SAMH for NIH, I can't remember which. And so there was funding now available for any counties or where we have parishes in Louisiana across the country who wanted to start court programs or maybe the mental health authority wanted to house the program. And so because there was now money available,

all of a sudden people were interested. People were not interested in AOT or as we know it, right? Assistive Outpatient treatment AOT and I'll call it AOT moving forward. People weren't interested in that because there was no funding allocated for it. New York did. allocate funding for their, for Kendra's law when they passed Kendra's law. And that came with a whole set of data collection requirements and so on and other requirements, which is good. If every state would do that, I'd be all for it. But ours didn't. So what happened in our state is we had in 2008 police officer by the name of Nicola Cotton, who was actually pregnant at the time, came into contact with an individual who had just been released from long-term psychiatric hospital. There was a suspect that

they were looking for and she had mistaken him for the suspect and came into contact with him. And he somehow got a hold of her service weapon and unloaded it into her and her unborn child and killed her. And it was a really impactful tragedy that happened in Louisiana that, and a lot of people were horrified by it and wanted something done. Wow, I can just imagine. So what happened from there? So at the time, our governor was Bobby Jindal. And so he looked at, he was looking at getting an AOT law passed, a la what other states were doing, right? So we weren't the first.

But in 2008, we did get a law passed, but the mental health authorities in the area weren't interested because they were interested in the law, but they weren't interested in starting programs because they said it was an unfunded mandate. So it sat on the books, essentially. Time goes on. I get up to speed.

Actually, the treatment advocacy center had reached out to me in New Orleans and a doctor who's a colleague in Baton Rouge to ask us if we could send groups up to one of their training symposiums that they had started in 2017 to help folks like us learn how to implement programs. So Treatment Advocacy Center at the time was becoming more interested in instead of just getting laws passed in states, implementing laws, starting programs, because they were seeing these unused laws. So once they reached out to you, what was next on the agenda? So we went up to Rockville, Maryland, SAMHSA headquarters in 2017. we, meaning a group of us from Louisiana, to learn aOT.

We went to this symposium and we got back and we said, you know, we have to do this in Louisiana. So we decided to do a statewide effort and eventually that resulted in the treatment advocacy center coming to Louisiana to do a training for the whole state, which was, you know, Louisiana's specific AOT training. At that time also, I had reached out to a civil court judge in New Orleans. in New Orleans were a little different from some counties and even parishes in Louisiana that we have a separate system of civil and criminal courts. So I had gone to a civil court judge to ask if he would be willing to start a program. And he said, absolutely, let's go. We were looking for funding. So he agreed to start the program on the merits of AOT, not because there was funding involved.

And so we had already started working on planning and developing a program with a huge collaborative group that we put together, including all. facets of folks who are impacted, all stakeholders. Can you expand on everyone that was involved in this? Police, to doctors, to the mental health authority, to the Disability Rights Center, what you would call the PAMI groups, P-A-I-M-I that represent people under commitments or not to make sure there's no abuse or neglect in systems. So we had a great group. And then Treatment Advocacy Center came down and did this symposium for us. And it just kind of, it kind of, it kind of, kind of locked everything in. It became a thing, right? Now we were not an idea. We were a thing. Yeah, that's great. What happened after that symposium? Did that change anything?

We continued to move forward with the Orleans AOT court program. Other parishes were very interested that they didn't start, but they started planning. And then later on, some of them got some funding and there have been efforts here and there. But our court in Orleans, the one that Judge Reese, Kern Reese and I started together, is robust up and running. We now are funded, although we do have funding issues. And so, you know, the doors opened and people came in, and we have been able to help an awful lot of people who met criteria based on that they have a mental illness and don't take their medications when they're not confined and end up either re-hospitalized or homeless or in the criminal justice system. And that's it. That's all the

criteria that's needed. Yeah, that's great. And you've accomplished a lot. But even with that said, there's just so much more that needs to be done. Yeah. And, like, like the legislators have told you, that's a huge mountain to climb. Yeah. Unfortunately, it is a huge mountain to climb, but until you start at the bottom of the mountain and work your way up, you'll never get to the top. Yeah, that's right. Everyone wants to get to top of that mountain, and they want to be able to brag that they did it.

So what is it going to take in your mind to get the legislation and get all these people together to make some actual change? Right. And these struggles have been going on for decades, right? So it's nothing new. And I think the issue is that people are very entrenched in their ideologies and beliefs. And we're always looking at these either-or solutions, which don't apply with mental illness or autism, because it's a health issue.

And mental illness doesn't discriminate who it impacts, right? Absolutely true. And also, there's this idea, I think, that mental illness or that it's a funding issue, that people who are poor with mental illness are the ones who are being impacted and that wealthier, people who are wealthier or better resource, are able to get help for their loved ones, which we know isn't true. So it's not even an economic issue. Severe mental illness, the impacts, the negative impacts we're seeing are based on policy barriers, not necessarily funding. Now funding is needed, but it's the ideologies that say,

well, we can't take a person's rights away from them. And I know you've talked a lot about that in these podcast, which doesn't even, it shouldn't even be a consideration when you're dealing with a person who is thought disordered. It's not about taking their rights away. It's about giving them their rights by helping them or getting them treatment so that they're not thought disordered and can make good decisions for themselves. Yeah, it comes down to common sense and sometimes that just doesn't work in legislation. These old fights have just become so territorial over their ideologies and not prepared to be open to learning anything new. And I mean, I have these discussions even on my own, on Facebook, right, or in social media or in my own circles. And unfortunately,

a lot of these folks don't work with folks who have severe mental illness. And so they really are speaking from ideas. Like, they're talking about their ideas, not their institutional knowledge or their experience. Yeah, and we do have to listen to those that have experience and lived experience. I know initiatives that have happened in the New Orleans area that started out with these ideas that, you know, we can't take a person's rights away from them. We shouldn't be putting them in hospitals because it's carceral. Literally, they use the word carceral. We shouldn't be using police. Police shouldn't be involved.

That if we're in charge, if we come in and we're in charge, all you people, the reason we have in all these problems is because all you people that have been in the system for years that aren't solving the problems, we're going to come to. So the problem is that you're the problem, and we're going to come in and replace you, and we're just better. You know, we're nicer. We're trauma-informed. We understand more about mental health, and you all are just, you know, you're just like mean, cruel people who are trying to force folks in medication into people. And, you know, as though somehow the people that have been in the system for decades don't care. And so we have folks that have come in and wiped out systems and replaced systems with their own system of ideas. and they're like, oh my God, what do we do? We can't handle these folks?

We need, like, Janet, can you get this person a long-term bed in some hospital or other in the state of Louisiana? This person can't, you know, they're not going into housing. They're, you know, we've tried to get them to trust us. And we've been trying for months. And I'm like, well, all those months you were trying, you know, this person has progressively deteriorated that much more when you've been helping her, right? And so now there is these conversations.

Once folks actually run into people with severe mandoliless and, you know, deal with the kind of stuff that families deal with on a day-to-day basis and providers and doctors and all of us, all the folks who have been trying to help for years and years and years, all of a sudden now they're realizing they're over their head. They want us all to come in and save them. But again, I mean, most of the problems are just ideological. There's no reason why we can't work together. I'm saying, look, I don't oppose anything you're doing that's helping folks or that's working for folks. It's permanent support of housing and it works, you know, all the power to you. You're using some sort of mental health program that's not.

medicinal, fine. If it works for that person, great. But stop opposing. Don't actively then oppose what we do their work. We don't oppose what you do that works. You're actively opposing what we do their work. So it's just having those conversations. In Louisiana, we've been able to do some things. Yeah, and it sounds like you've done a lot of great things. So in closing, what would you like to tell the listeners that you think is important that they hear? Right. So every state is different. I think it's really important that people know what's going on in their own state. So getting in at the roots level, like in Louisiana, I can tell you, I'm looking at a spreadsheet right now. We have 80 psychiatric hospitals. And a lot of them are in the New Orleans region. We have plenty of psychiatric beds.

We have no problem getting people into beds. We don't just rely on 911 systems. We also have a system where a person can go. I know this is a weird. The coroner's offices in Louisiana are where a family can go to get an order of protective custody to get a police officer to come or a law enforcement officer to come and pick up their loved one and take them to a hospital. There's no ambiguity.

If the coroner has said yes, and they have psychiatrists, coroner's assistants are all psychiatrists, very highly educated and trained. And if they said, yes, this person meets criteria to be transported to a hospital where there will be an expert who will evaluate them further

to determine if they need to be admitted to a bed or not, then they will be admitted to the bed. So we have that in place. So everyone's like, well, what's the problem? Why is our homelessness? It has increased 20% in 2022. Jails are full of people with severe mental illnesses.

Our hospitals are, you know, people in the revolving door. They're being turned around and spun in and spun out. Like, no tomorrow. So why when we have all of these systems in place where we can get a person into the hospital, even if they're not imminently dangerous to themselves or others in this very moment? Why are we seeing the same problems we're seeing in other parts of the country? You know, it's breaking that down further. And so most of it tracks back to the 15-day rule, right?

So the 15-day in lieu of waivers, Medicaid waivers that are waivers to the IMD exclusion where a person can get two weeks in a hospital per month that Medicaid will pay for, and that's it. And the hospitals are going to follow that rule for the most part. So what we need is long-term continuity of care and communication in our state, right? So it's not that we can't get people into bed. And I hear people telling me, well, we need more beds. You know, we have a shortage of beds, and I show them a spreadsheet.

And I'm like, look at this spreadsheet. We don't have a shortage of bed. We have a shortage of long-term continuity of care. We can get a person in the bed. We can't keep them there long enough for them to truly stabilize. So those are our issues in Louisiana. And in a lot of ways, I think Louisiana is the canary and the bull mine. Because I see advocates out there in the country, they're fighting that, well, we just need more beds.

And it's like, yes, you do. But that's not going to solve your problem. You need to go beyond that. we all have to learn from each other, but that would be the main thing. It's like, know your state, know your area, be a national advocate, but be a state advocate as well. Because that's where everything is local. All politics is local. And politicians are more likely to listen to you if you are speaking their language. If you are identifying a real problem that's happening right now that you can identify and you can say in our state, this is why this problem is happening. So know that makes you more credible.

When I started healing Minds NOLA and doing the national advocacy work, we got a lot of stuff done. I got laws changed. We rewrote our entire AOT law to remove any barriers from anybody referring a patient or a person into our program. We got our psychiatric deterioration standard added to the grave disability standard so we can get people into treatment earlier. We got a law passed last year that's about continuity communications in the patient psychiatric hospitals that mandates that hospitals take information from families that use that information. and discharged to the provider and that there's no breaking communication. We got that law passed. So, but I can tell you that the one thing that has made a huge difference, I think, for me,

is in actually running and coordinating an AOT court program where I am now entrenched in these psychiatric systems where I'm dealing with dozens of psychiatrists, inpatient and outpatient. I'm dealing with all the outpatient provider systems. I'm dealing with the housing systems on a direct one-to-one basis. I think that experience, though it's taken me away from my advocacy a little bit, which I'm trying to get back to, that experience has made me a much more credible advocate. As far as advocacy, keep learning, keep doing those deeper dives, like getting to your own state because that's where you'll find what solutions are going to work not only for your own state, but nationally. Yeah, that's perfect information that can help a lot of people. Well, this has been

awesome. Great information, great conversation. I really appreciate you taking the time to come on. Likewise, it's good to meet you, Tony. Good luck with all of the work that you're doing up there. And thank you so much. There's just so few people that are really moving the ball with autism, mental illness that are the most vulnerable in our community. And when someone like you steps up to be a voice, it's a big deal. So thank you. It's been my pleasure. Thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you'll enjoy it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why not me.

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