Tony Mantor: Why Not Me the World
Leslie Carpenter: Breaking the Mental Health Crisis Cycle
Thu, 08 May 2025
Send us a textLeslie 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 treatmentIf 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.https://tonymantor.comhttps://Facebook.com/tonymantorhttps://instagram.com/tonymantorhttps://twitter.com/tonymantorhttps://youtube.com/tonymantormusicintro/outro music bed written by T. WildWhy Not Me the World music published by Mantor Music (BMI)
Chapter 1: Who is Leslie Carpenter and what is her advocacy story?
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.
You bet. I'm happy to be here.
Can you tell us what led you to get involved in what you're doing today as an advocate for mental health?
Chapter 2: What led Leslie Carpenter to become a mental health advocate?
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, you know, 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.
Does your company primarily operate on a regional level or does it have a national presence?
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.
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Chapter 3: How does Leslie Carpenter propose to reform the mental health legislative system?
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?
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. 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.
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.
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 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.
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Chapter 4: How can society bridge the understanding gap for severe mental illness?
Yes, I totally agree with you. 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, 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?
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.
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 gonna create a social movement and get the change to happen.
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?
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Chapter 5: What progress is being made in mental health treatment and 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?
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.
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.
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?
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Chapter 6: How can legal systems better address mental health crises?
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.
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. Now, what I will tell you is that there are more criminal mental health courts now than there used to be.
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?
If it were less than that and the person weren't found to be at risk for hurting somebody else, there's the 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.
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