Tony Mantor: Why Not Me the World

Leslie Carpenter: Breaking the Mental Health Crisis Cycle

• Tony Mantor

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Leslie Carpenter, co-founder of Iowa Mental Health Advocacy and Legislative Advocacy Manager at the Treatment Advocacy Center, shares her journey from concerned mother to dedicated mental health advocate after her son was diagnosed with schizoaffective disorder 19 years ago. 

She discusses the barriers families face when seeking help for loved ones with severe mental illness and her multi-level approach to creating systemic change.

• Leslie advocates at both state and national levels, tracking legislation across all 50 states
• Mental health reform requires community-based collaboration, state-level policy changes, and federal action
• Creating empathy for those with severe mental illness requires sharing stories and humanizing affected individuals
• Current laws often prevent intervention until someone becomes dangerous, causing unnecessary suffering
• Progress is happening with Crisis Intervention Team training for police and mental health courts
• First responders, including 911 operators, need specialized training to properly handle mental health crises
• The 988 crisis line offers an alternative to 911 for mental health emergencies
• Hope is crucial - people with severe mental illness can attend college, build careers, and lead fulfilling lives with proper treatment

If you know anyone who would like to share their story on Why Not Me? The World, send them to TonyMantor.com/Contact. 

Please tell everyone everywhere about our show and the inspiration our guests provide.


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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me? The World Podcast, hosted by Tony Maitour, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantour. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining us today is Leslie Carpenter, co-founder of Iowa Mental Health Advocacy and a dedicated lobbyist for her state legislature. She also serves as a legislative advocacy manager at the Treatment Advocacy Center. With her wealth of knowledge and experience, we're thrilled to have her here. Thanks for coming on.

Speaker 2:

You bet I'm happy to be here.

Speaker 1:

Can you tell us what led you to get involved in what you're doing today as an advocate for mental health?

Speaker 2:

Well, my husband and I have two adult children, one of whom lives with a very severe schizoaffective disorder, and he's been sick for about 19 years. So we've had extensive experience navigating the whole mental health system if you can call it that, meeting more barriers than we did help, and so eventually I decided to retire from my career as a physical therapist to spend the rest of my life working on improving the system. So it'll help the next person who gets sick more than it helped our son.

Speaker 1:

Does your company primarily operate on a regional level or does it have a national presence?

Speaker 2:

So I wear two hats. With one hat I am the co-founder of Iowa Mental Health Advocacy, in which my husband and I basically created a website, created this agency, which is really just a mom and pop shop, and from that I have evolved into being a lobbyist at our state legislature here in Iowa. But I've also gotten involved in a lot of community work, committee work, statewide work to work in various ways to improve the mental health care delivery system in Iowa. And then, with a separate hat, I also work for the Treatment Advocacy Center for about the past year and a month on a part-time basis as their legislative advocacy manager, and I track legislation across the whole country in all 50 states and the federal government and then help advocates to either pass or hopefully block bills, depending upon how they affect the treatment of people with severe mental illness.

Speaker 1:

How would you approach reforming the legislative system, given that we recognize the need for change to improve conditions for everyone? Change takes time, so what initial steps would you take to kickstart the process and encourage more constructive discussions so we can create a win-win situation for everyone involved?

Speaker 2:

Yeah, that's a really good question. So for me that started. My first step was with research. I did extensive reading of books related to policy in this area to understand exactly that question where do you start right? Because it's not all about fixing laws, it's not all about education and it's not all about just changing practices it's all of it. So I did extensive research and then just began.

Speaker 2:

So I kind of think I break it down into a couple different ways. One is some of the work has to be community-based. Some of the work needs to be getting better collaboration and cooperation and communication between the players and the system in your area to work with each other to help plug the gaps of where people are falling through and not getting care. So that's one level of work that needs to happen and I'm very much engaged with here in Iowa City, iowa.

Speaker 2:

Another level of work is what can happen at the state level in terms of both getting improved laws, so that the law allows for some improved practices, but also in terms of both getting improved laws so that the law allows for some improved practices, but also in terms of influencing the education of the players in the system at the state level to do again high-level communication, collaboration and coordination of care, because when we're talking about the individuals with the most severe mental illnesses, it's not just busting stigma, it's not just getting equity or parity right. It is about doing the hard, intensive case management that needs to happen around. Some of the people that are going through the revolving door churn to stop that revolving door, catch them and individualize their care so that they are not left to suffer. So some of the work is there and then, of course, at a bigger level, some of the work is national. Some of the federal laws also have to change and attitudes, so it's big yes, I totally agree with you.

Speaker 1:

Things do need to change. Attitude is a big ingredient of helping change In circumstances like these, it's a regrettable reality that, as a nation, we frequently fail to acknowledge the gravity of an issue until it directly impacts our own families. Only when it strikes close to home does it rise to the level of a pressing priority. The challenge then, then, is this how do we bridge the gap in understanding between those who remain untouched by these experiences and those who deal with them daily? We need to find a way that we can bring our collective minds together to drive bigger, meaningful change on a national level. What's the best way that we can go about getting this accomplished?

Speaker 2:

That is exactly the question. That is the whole crux of the problem. It is a lot easier to advocate for little kids for anything that they need, whether it's autism or cancer or whatever it might be right, it's a sympathetic group to advocate for. It is much harder to get people to care about people with severe mental illnesses, and what it takes is sharing stories. It takes letting these people know that most of these people that are sick started out the same way that all of our kids did. They started out in normal families. Many of them were highly educated, highly talented kids who had an onset of a severe mental illness during their late teens and early 20s that came and robbed them of everything that they had before.

Speaker 2:

And your question about how do you get people to care if it doesn't personally affect them, that's a much bigger question, right? How do we get people to care about anything that doesn't affect them? That's part of our society today. It's harder to do that, and the way that I think we need to approach it is to be constantly getting out there with the stories and constantly engaging on it at every single level. And I will tell you that when I attend events, legislative forums that are around mental health and I'm sitting there next to somebody who is not personally affected. That gives me hope, right, but we need a lot more of those people if we're really going to create a social movement and get the change to happen.

Speaker 1:

You're absolutely right. I recently had a guest on my podcast, a great guy from London, big, healthy, autistic and ADHD. He made an interesting point. When he tells people he's autistic, they often look at him and strangely say you don't look autistic. He went on to say if I had told them I had cancer, their response would immediately shift to oh, how can I help? How do we help people understand that everyone needs support and empathy, even when their struggles aren't visible? What can we do to encourage others to ask how can I help, no matter what it is they may be dealing with? And that brings up a very good point.

Speaker 2:

There are people walking around with schizophrenia who are functioning quite well and I'm so grateful for that, and we're very grateful when they bring and that brings up a very good point. There are people walking around with schizophrenia who are functioning quite well, and I'm so grateful for that, and we're very grateful when they bring their voices to the work, but those aren't the people that we're really needing to advocate for, right? We're needing to advocate for the homeless guy down on the corner who's ranting at the birds and who doesn't have the right level of clothing on and is starving and is unable to take care of his own needs in any way. How do we get people to see that this is somebody that is there not because they're choosing to be there, but because they have a brain illness that they never asked for and we have failed to step up to help them. That's the challenge.

Speaker 1:

You're right, it is. I think a big thing is getting more information out there that shows them if someone has a psychotic episode that it doesn't mean that it's a death sentence. They can get help turn it around and have a fulfilling life.

Speaker 2:

That is exactly right. The treatments that are available now are so much better than they were even just 10 years ago, and certainly better than what they were 60 years ago when we began this massive deinstitutionalization movement. Right, it has evolved. It's not as far along as we would all hope, but people can do very well if we are able to keep them in treatment on a consistent basis.

Speaker 1:

If we reflect on how our understanding of autism and mental health has evolved over time. Back when autism was first identified I think that was around 1910, it was seen as a psychotic disorder and the treatments were often harsh because people didn't fully grasp what it was, and the treatments were often harsh because people didn't fully grasp what it was. By the 50s and the 60s we started to see some shifts in perception, but it wasn't until the 90s and beyond that things started to change. I see a similar pattern with mental health. Over the last 20 or 30 years, we've moved away from just labeling someone as the odd one out toward recognizing they might need support. Now, what have you seen since? You've been doing this in the last 20 or 30 years where you've seen changes making you feel we're headed in the right direction?

Speaker 2:

That's a really good question. So part of the issue that we have is that so many people don't understand about psychosis and how it's a very altered perception of reality, right, and that makes it hard for somebody to voluntarily agree for treatment. And they don't understand that a certain percentage of these people also have anosognosia, where they don't know that they're sick because the brain has changed, because of the brain illness itself, that makes them unable to engage in treatment. We are doing a better job of getting that education out there, not just to families, but also to providers Unfortunately there's a lot of providers who don't understand that but also to the general public and especially legislators, and I would tell you that it seems that the tide is starting to turn, where we are seeing states start to make changes, understanding that New York City is a wonderful example.

Speaker 2:

They are doing things to provide compassionate treatment to people that have been unfortunately neglected and left on their streets for far too long. California is another example where we're starting to see the transition with the introduction of the care courts to allow for better ability to get help to people who don't know they're sick. We're starting to see that happen more and more across the country and we're starting to see states take actions like adding state hospital beds, removing certificate of need requirements to get a new psychiatric hospital built to start to resupplement the need for acute care settings for people in psychosis, and we're starting to see the acknowledgement that we need more long-term permanent supportive housing of various types for people with various needs, and that's all very encouraging types for people with various needs, and that's all very encouraging.

Speaker 1:

Well, that's very good to hear. Now, one of the things that I hear consistently from varying people that I speak with is the person could have a brother, a sister, a son, a daughter, whoever it might be, that is having some serious issues and they might know they're not completely right, yet they would not allow them to take them to the hospital, to a doctor, to see what's going on. How do we get that changed so that if a person needs to step in to help someone, they can actually do it without having anything that comes back at them?

Speaker 2:

Right, that's the bigger challenge. I call it the sick person in the basement syndrome, where everybody in the house knows that the person is very severely sick but we can't get them help because they won't voluntarily agree to it and unfortunately our laws don't allow us to step in in many states until somebody becomes a danger to themselves or others. Meanwhile there's a huge amount of brain damage happening to that person while they're actively in psychosis. So how do we change that? It's twofold. One is changing the laws to allow us to recognize psychiatric deterioration as a reason to allow for involuntary assessment and treatment in the first place. But it's also education to law enforcement, to psychiatrists, to ED doctors, right To all the players in the system, that the laws, many of the laws, allow us to intervene much sooner than what we currently do in terms of how it's practiced, in terms of how they do that and so much of that is fed by the bed shortage.

Speaker 2:

That and so much of that is fed by the bed shortage. So adding more beds and adding more education and to some extent improving the laws, all of those things should allow us to be able to intervene sooner and provide medical care in a way that makes medical sense not bound so much by the laws.

Speaker 1:

In a society where perception drives so much of our response to behavior, how do we tackle the challenge of reforming the legal system to better address someone with a mental health crisis? Many based on fear and misunderstanding is to see them as dangerous or bad, pushing for jail or lifelong incarceration Basically throw away the key. How can we bridge the gap between the public perception, encouraging a legal framework that prioritizes understanding and treatment, so we have a better situation between the legal system and the people that are facing the legal system?

Speaker 2:

Yeah, it's a really good question and what I'm excited to tell you is that there are changes in the legal system. In fact, the courts and many of the judicial commissions that are in each of our states being led by the National Center for State Courts they are ahead of us. They are working on improving the legal system's ability to be agile, and if somebody has committed a very minor crime maybe they slept in the wrong place and they got arrested for being homeless and they get taken into jail right. So the charges, like trespassing, allowing for assessments to happen Okay, why did this happen? Oh, the person's mentally ill. Let's divert this person to treatment and drop the charges right. And that recognition is starting to happen among the legal professions as well as the legal systems. Is it a lot of work still to be done in this case? Absolutely, but they're actually a little bit ahead of us. They're ahead of the medical system in recognizing this.

Speaker 1:

Actually, Unfortunately, the next step often comes when someone acts in a different way that draws legal attention. I've spoken with several people who tried to involve the police. Police either couldn't or wouldn't step in. Then, after hours or even days or whatever the time frame may be, that person winds up committing a crime. In one situation, a person stabbed a lady in the leg. It was just serious enough to land them in the criminal justice system and from there it spiraled downward. How do we make the point that, yes, he did something wrong, yet it stemmed from mental health struggles and a need for medication? If he could have gotten the help and treatment and support to get him back on track, the outcome could have been a much different outcome. That would have benefited everyone.

Speaker 2:

So again, I'm happy to report to you that there are ways that some of these jurisdictions are trying to act on this. Obviously, sometimes they will refer the person for what's called competency restoration. Unfortunately, we have too few of those beds as well in most of our states, and so people end up waiting to get to that. And competency restoration is not the same thing as treatment. It is just providing some medication and court classes to get the person well enough to be able to participate in their own defense.

Speaker 2:

Now what I will tell you is that there are more criminal mental health courts now than there used to be.

Speaker 2:

It would be left up to the jurisdiction to decide whether or not that person who stabbed somebody in a leg would be considered dangerous enough where they felt like they had to handle that through the criminal system and keep the person secure right.

Speaker 2:

If it were less than that and the person weren't found to be at risk for hurting somebody else, there's a potential to potentially either get them into a mental health court treatment program or dismiss their charges and get them referred to an AOT or assisted outpatient treatment program. In any of these cases, I think the basic thing that has to happen is the recognition that it was the untreated illness that caused that incident to occur in the first place. It was not endemically the person being a bad person, and that's where we still have work to do, because once we get that to be understood, then it's easier to get these systems to work together better to get somebody treatment and even if the person is charged and found guilty and placed into incarceration, they still deserve to get treatment while they're there and the opportunity to do things to help make it easier if they get back out, if and when they get back out, so that they aren't just released from a jail or a prison with no connection to treatment, because that doesn't help anybody.

Speaker 1:

Absolutely, so it still comes back to education.

Speaker 2:

It does, so much of it is education.

Speaker 1:

Most organizations seem to have opportunities, whether it's events, discussions, informal gatherings where people can come together, connect and hopefully get more information on how your organization can help them. Now, to take it a step further how do you extend that engagement beyond just your organization, because in my mind and correct me if I'm wrong it feels like there is just not enough organizations out there doing this. How do you see that expanding and evolving?

Speaker 2:

I agree, there's not. There's not enough. How do we do it? We get ourselves invited to professional conferences of various types. Get ourselves to, you know, judicial commissions. Get ourselves to you know the attorneys association meetings, get ourselves to provider meetings and you know, conferences. It is a huge amount of work that will take many different people coming together to work toward that, and not necessarily all in the same way, but we all need to be working on it.

Speaker 1:

Yes, how much outreach do you have working with first responders so they can identify themselves at the initial point of contact? The more training they have, of course, to gain a better understanding of the situation. They only have seconds at times to react, so this gives them a chance to quickly assess whether it's an autistic meltdown, a mental health crisis such as psychosis, or something else entirely different. First responders often don't have time to sit down for a lengthy discussion, so we need to equip them with the tools to evaluate situations rapidly and accurately. As you know, this can de-escalate the situation effectively and prevent it from becoming a bigger issue.

Speaker 2:

Correct, yeah, and wearing my Iowa mental health advocacy hat. I have been speaking for several years now during the crisis intervention team trainings that happen here locally in our county. I've also started doing it at other counties through the state and I will tell you that there are a lot of mental health advocates especially the moms of people with severe mental illness and peers who live with illnesses who go out and speak at these trainings to help give them both the patient and family perspective to provide that very education. Now, thankfully, there's a lot of crisis intervention team training going on around the country, as well as having mental health responders or co-responders, and we fully support all of those models because you're right, if they can understand and deescalate it in the first place, you can avoid that whole criminal legal system and have them help get the person into treatment. That's really critical work and I will tell you that there's probably hundreds, if not thousands, of people across the country engaged in doing that education and work every day.

Speaker 1:

I've heard, police precincts often have limited time and budget for training officers. Despite these constraints, have you noticed an increasing willingness for them to invest in CIT training because they've recognized its necessities?

Speaker 2:

Absolutely, Absolutely. I live in a county in Iowa. I live in Johnson County, Iowa. I was the first one to start getting involved in doing this and now there's been a huge, a lot more state support for it in terms of providing funding from our MHGS regions, or mental health and disability services regions, to help facilitate helping local police precincts being able to afford to send one or two staffers to a training without completely depleting their own staff. Right, it's complicated because they have to be able to do that for 40 hours and I will tell you that once they are doing it and they see the effects of it and the positive outcomes that happen because they've got everybody trained, it really does help. But it takes time to build up enough of those trained officers any one location so that potentially you have people that can respond to more than one at a time crisis as well as throughout the three different shifts that happen in terms of a 24-7 cycle.

Speaker 1:

Now let's take it past the first responders. Many times, before the police get involved, there is someone that's on the other end of 911. Now they need training just as much as the police so they can get as much information as they can from the phone call to give to the police while they're, get as much information as they can from the phone call to give to the police while they're in transit. This way they know whether it's an autistic meltdown, a serious mental health issue or something else. Are they included in this training along with the police?

Speaker 2:

Correct and luckily I can tell you locally, these people are included in the yearly trainings that happen, so all new people coming into these roles go through that training and I'm seeing more and more of that happening across the country. We definitely need that, in addition to trying to get more people to call 988 instead of calling 911 when that's appropriate.

Speaker 1:

That's a good thing to know. I think a lot of people don't even realize that that number even exists.

Speaker 2:

Correct, but using 988 as your first phone call is a way to hopefully encourage more of a mental health response as opposed to a law enforcement response. It increases your likelihood that that will happen.

Speaker 1:

Yeah, and I think many people fail to recognize that an individual's struggles, such as autism or serious mental health challenges, extend far beyond the person themselves. These conditions impact entire communities, families, friends, law enforcement, health care professionals. There's such a web of people that it extends to. I think we have to acknowledge and tackle that broader ripple effect, not just the individual experience, because, again, this is a situation that just impacts so many people in the community.

Speaker 2:

Absolutely, and it is a major impact on all of those people. But the better care we can provide early on and the more consistently we can keep somebody in that treatment, the less of a detrimental effect there is on everyone, and most especially that person.

Speaker 1:

This has been a great conversation with a lot of good information. Now, in closing, what would you like to tell people that you think is very important, that they need to know? That can help them moving forward.

Speaker 2:

It's important to hear that we need to have providers providing more hope to people when they're first getting sick. All too often we hear from families where they get told their loved one is sick. The loved one who is sick gets told by the doctors oh, you've been diagnosed with this, you're going to be taking medication for the rest of your life. You can't possibly go to college now. Da, da, da, da da. And that's really harmful because I think the most important ingredient for the person who's been diagnosed is hope. They need to understand that if they are engaged in treatment and they do the work with the treatment providers beyond medication right, and they can still work towards going to college, having a degree, having a relationship, getting married, having kids All these things are entirely possible and too few people get told that when they're first diagnosed and we as a society need to do a better job coming around them and supporting that hope.

Speaker 1:

Yes, hope is very important. I've spoken with several people who have faced overwhelming challenges, yet somehow they've managed to turn their lives around and are now thriving, proving that it's absolutely possible to live a normal life.

Speaker 2:

Extremely possible. We just need to do better, providing all the supports, even sometimes on an involuntary basis, when that is absolutely necessary for a time, to help get the person well enough to engage on their own.

Speaker 1:

Do you believe that boosting advertising efforts across TV radio, the internet, facebook, various other platforms might enhance public engagement, complementing the strategies already in place? Do you think any of these things would help improve?

Speaker 2:

the situation to get it to the next level. Might, I'm not sure how much money or people would be interested in financing something like that. It might help. I would never say it wouldn't help, but but really it's the people working in the system being able to work with each other and educating a lot more people in every realm. So from the point of education standpoint, yes, that would be helpful.

Speaker 1:

Yeah, I believe the most critical step that we can take is to explore every possible avenue, every nook and cranny, as the saying goes, to uncover and share vital information. This way we can empower people who might not have even considered the issue before, sparking some awareness and, hopefully, making some meaningful change.

Speaker 2:

Absolutely. And sharing success stories, sharing the stories of somebody who was homeless, who did get into treatment and turned everything around and ended up being able to go on and live a very successful but happy, peaceful life. That's the thing we need to have people understand that this can happen.

Speaker 1:

Yeah, absolutely. Well, this has been fantastic. I really appreciate you taking the time to come on.

Speaker 2:

You bet. Thank you for the opportunity and thank you for the work that you're doing.

Speaker 1:

Oh, it's my pleasure. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why not me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.