← Tony Mantor: Why Not Me ?
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- [00:07]
A
Welcome to why Not Me Embracing Autism and Mental Health Worldwide, hosted by Tony Meitour, broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect, and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantour. Welcome to why Not Me Embracing Autism and Mental Health Worldwide. Before we jump in, if you haven't already, I invite you to tap follow. It only takes a couple of seconds and it helps this show reach more families who need to hear these conversations. Thanks for being here. Welcome to our special event crafting Empowering Autism and Mental Health through Legislation. Joining us today is John Nutting, a former Maine state senator who has spent time on the front lines of government helping craft legislation that impacts mental health services and the system families rely on. We're going to talk about the realities of serious mental illness, the challenges policymakers face in addressing it, and what meaningful change could look like if we truly prioritize mental health in our communities. It's going to be a great conversation. Thanks for joining us today.
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B
That's all right. No, no problem at all.
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A
If you would give us a little information about yourself and your background.
- [02:05]
B
Well, I used to be a dairy farmer, slash state legislator. Looking back on, I don't know how I did both, but I was young and so was my wife. And the chief justice of the Supreme Court, Maine Supreme Court, years ago told me, said if a family tells me that there's no brain disorders in their family, I know they're lying because it's biological. It's in every family. And that's one of the points we're trying to make here in Maine, is that if you have a disorder of any part of your body, it goes without saying that you're going to treat that disorder. The same should be true for the brain.
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A
Absolutely.
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B
And we've got millions of families torn apart by this subject nationwide and go to homelessness and in jails and hospitals over and over and over again. Because one particular group has this debate raging across the country that, well, it's their right to be psychotic, right to be bipolar.
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A
Right.
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B
And that just assures that they're not going to have any successes and may hurt somebody else or may hurt themselves. It's just so unnecessary. The levels of melatonin and serotonin in their brains are not normal.
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A
Sure.
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B
Especially some of the now newer medications help to restore those without as many side effects as previously previous medications. Some progress being made there so that they can go on and start to have some successes in their lives.
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A
Sure. I know different states have different acronyms for this. So what is the AOT law in the state of Maine?
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B
Well, it's called the Progressive Treatment Plan. I was a sponsor of it as a state senator way back in 2003. We've made some progress, but I have to admit that it's been a 23 year battle to try to get the original law implemented as it was written. We're still not there yet. We've made progress. Bob Staples, who you met before and I just finished going to Augusta. In fact we had the final vote today on LD 1989 enact to an increased access to the Progressive Treatment Plan legal fund because last year the attorney general suddenly announced they weren't going to represent all of the PTP hearings in front of our judges. And so it left families really in the alerts that if they couldn't afford attorney themselves a loved one was not going to extend. It is for a one year term with one year extensions at a time if they have a district court judge agree to it.
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A
Okay. Now when lawmakers start crafting legislation for mental health, what are the biggest gaps you see between the family's actual needs versus what policy is actually providing?
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B
Well, I think there has to be more communication both ways and it's better than it used to be. But we've had one group in Maine that has fought us on the subject for 23, actually 24 years now, the Disability Rights center that don't like anything like this. It's, it's their right to be psychotic. They shouldn't have their rights taken away by a court order and you know, blah blah, blah like that. And of course three quarters of schizophrenics and maybe 50% of bipolar have awareness themselves. They don't have this antosogia lack of awareness. And they, the groups against AOT and against the PTP plan in Maine seem to have this thought that nobody has antipsygnosial lack of awareness and nobody needs a quote order. And of course that's not, not the case.
- [05:53]
A
You know, I remember when I was living in the state of Maine at that time there was a big push for smoking bans around the state in all the areas. I had friends that were Very heavy smokers. They would argue that they had the right to smoke. I said, I have the right not to breathe your smoke.
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B
Right.
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A
I don't understand what part of the disability act that they just don't get. Maybe they have the right to be psychotic, but we have the right to feel safe in our own community.
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B
We have the right not to pay millions and millions of dollars to keep people in jails and hospitals all their lives after they commit a crime because we didn't help them with their lack of awareness by keeping them on a treatment plan. You take the young men in Westbrook last year that killed the young parents in front of their children in their car. He had been on a PTP plan and was off his treatment plan. He was working with an intensive case manager who knew full well about Maine's PTP statute, could have filed a court order to keep him on his treatment plan, did none of that. So now the state of Maine is going to pay about $21 million to keep him lifetime in jail.
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A
Yeah, I was told that the biggest hospital in the country for serious mental illness is the LA County Prison. If that is true, we really need to do something to help these people that are incarcerated, then merely putting them through the court system and then ultimately in jail is not helping. What is the root cause of this issue?
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B
Just last week in front of the Maine legislature, the head of the Maine Sheriff's association said, we need more funding because we're being forced to keep hundreds, hundreds of people in our county jails that should be out in the community with supports or in a hospital, and we're just warehousing them in the county jails.
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A
Now, in today's world, of course, it's changed some since you were in the Senate. Now, if you was advising a senator or a representative for legislation that's happening this year, what is it that you would prioritize to truly help the lives of, of the individuals and of course their families that were trying to get these bills passed for.
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B
I would have them as we do for any other medical condition. I would urge them to speak to the medical professionals in the field. The psychiatrists, psychologists, the nurse practitioners, the main nurses association, all work on a daily basis with individuals suffering from untreated brain disorders. And they're the ones. Well, a nurse put it to me so eloquently, just a month or so, she said, this anosognosia, lack of awareness. People with Alzheimer's and dementia have the same anosognosia and we put them in facilities so that we assure that those people receive the care they do not realize they need. And yet with the schizophrenic, with anosognosia, we build a nice mental health facility and say, if you want to come see me, oh, oh, come in. We'll help you. And they're never going to come in. I don't need to be in a treatment plan. You need to be on a treatment plan. Is they're coming from. And so it's the same anosognosia, whether schizophrenic or an Alzheimer's, and yet we treat them totally different.
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A
Yeah, that is totally crazy. In some states, and I'm not sure where Maine falls on this particular issue. One of the consistent problems I hear is there are never enough beds in the state. And then, of course, to get those beds, they need the funding to go through. It seems like a vicious circle. My question how do we stop that circle so people can get the help?
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B
The biggest single thing we could do so quickly, in my opinion, is stop the person that's cycling over and over again and tying up hundreds of beds. I heard of a young man in Maine that had 43 hospitalizations before they finally put him on the PTP plan six years ago. He's had none since. And so we're tying up an unbelievable amount of bed space over and over with these folks, cycling over and over and over again. Same with the jail cells.
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A
Yeah, that almost sounds like common sense. Now, I have heard many people say that when they talk with their senators, their legislators, lawyers, any of those people, they tend to feel like they're invisible. They feel like they do not understand what they are going through. How can we build their confidence that their voices are actually getting heard and what they say actually means something so that we can get them the help that they need?
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B
In Maine, in the last eight to 10 years, we've had so many instances where we've got our growing list of parents and family members from our family support groups to come to Augusta to testify on public hearings, to come to Augusta for press conferences. After the Lewiston tragedy that was written in all the papers, a young man was schizophrenic. The army had him on a treatment plan. He was reservist. So when his reserve time was done, they released him to the state of Maine. State of Maine did not keep him on his treatment plan. And so we had three press conferences on that one subject alone, because you almost could have predicted that eventually something was going to happen. The psychosis and the visions that they get. Schizophrenia, especially it becomes reality to them. That demon is living in the light switch, or my mother is trying to kill me and is evil. And once they're on a treatment plan, those things change.
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A
Yes, that's a very tough situation for sure.
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B
I know a parent that I've got to keep nameless, but she lives in the southern part of the United States, and because of her son's phobia and delusions that are real to him, she's very evil, and he has to kill her. He's a former sharpshooter in the military, not just an average person. The laws down there are so terrible, different county by county, that they're just saying, oh, well, oh, well, you know, absolutely nothing. This is just, you know, a terrible, terrible situation.
- [12:44]
A
Yes, it is. And I believe that. I have spoken with that lady that you're talking about, and it sure is a bad situation. What we have to hope for is some of these states are going to get together, put their heads together and come up with something that are real solutions.
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B
Last year, I, like millions of other people, watched Governor Newsom from California come gone 60 Minutes talking about the new Care Court act in California, extra money for judges and housing to get the homeless off the street and help them get a job. All sounded wonderful. And right at the last minute, without telling the parents or the psychiatrists or any of the medical professionals, they made it voluntary. It gutted the whole bill. So now I've heard with our National Shattering Silence Coalition, monthly national Zoom Calls, we have parents in California. They get their loved one to court. You know, you've been homeless, in and out of jails. This is going to be an apartment for you. We're going to work with you on a daily basis, get you a job. Are you interested? And the young person says, hell, no. I don't need to be in a treatment plan. You need to be in a treatment plan. They walk out of the court. Nothing ever happens. And of course, that was the urging of the Disability Rights center that, you know, hates these type of laws nationwide. I'm hoping Massachusetts this year is the 49th state that has a statute like this. Were all kind of looking up at Michigan. Their law is Heaven's law. What I've read and talked to and seen, they're by far the finest state in the country. They started with one area of Michigan that has about 400,000 people in it, and a retired judge is running the program. And they have over 2,700 people on their Kevin's Law program. They have room in their hospitals. They have room in their jail. Their homeless problem is much less than it used to be because people are on their treatment plan.
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A
When I very first started talking about schizophrenia and serious mental illness, I'll be honest, I really didn't know anything about it at all. And when I would hear about something that someone did that turned out to be psychotic, I didn't understand that this was serious mental illness. So my first reaction was, put him in jail, throw away the key.
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B
Right.
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A
Now, since I've been talking with people and gaining more understanding of this, my first reaction when I hear or see of someone that did something, I want to know, is this person just a really bad person or is this a situation where the system completely failed them?
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B
Right, right.
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A
How do we teach and get people to understand that just because someone does something does not mean they're bad? It means we have to look at the system first more than just a person.
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B
Yes. Excellent, Excellent question. It's a much needed change we need to make. I think a lot of the elementary and high schools are beginning to try to broach that subject. A lot of it is still so, like, I don't understand myself. I've never talked to anybody that does understand why the vast majority of schizophrenics are born in January and the first two weeks of February. Why? And so it's just the phobias and the delusions become so real to these individuals that they start doing things that others are to harm themselves.
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A
Just a short time ago, I talked with a legislator that was working on a bill for serious mental illness in that state. They were able to work on a bill, put it together, and get it ready to present to the House. Then they had a vote on it, and the vote came back unanimous that they passed the bill. Then it went to the Senate where it died a horrible death there. How do we get these people, our representatives, talking to each other so they understand the issue? Because if a bill went through the House and got passed by that many people, they need to look at it a little bit harder so they can make it into a law that is actually going to help the people that so desperately need it.
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B
Yes. I mean, it's like when I served him, there was at least some communication between both ends of the hallway. We used to call it between the House and the Senate when one body did one thing, you know, at least you were aware of it also going to be improved, I think, going forward. If we slowly, and I think this is happening slowly, increase the number of parents that are unashamed and are willing to reach out to legislators to let them know what this really is, that it's real, that when they're not on the treatment plan, it's devastational to the. Not only the family, but usually the community. And so that they raise people's awareness. This is a medical condition. This is not, you know, Billy down the street choosing to do this. This is what he believes, you know, he should do in order to survive. And of course, it's not. It's not accurate at all.
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A
Yeah. Now, sometimes legislation is passed and the intentions of it was something that was really, really good, but the end outcome for the people that it was supposed to help, for some reason, it just doesn't work. So with your experience of working with legislators and of course, the Senate, what separates meaningful legislation from policy that just looks good on paper?
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B
Well, in Maine, I first submitted this bill in 2002 and had a firestorm of opposition to it and some parents there testifying for it. And the Commissioner of Health and Human Services at the time under the John Baldacci administration, talked to the administrators of the law in New York, which is called Kendra's Law. So she brought forth the suggestion that we table a bill from one session to. Between the session, between the first long session and the second shorter section. She put together a very large, thorough work study group over eight months involving medical professionals and parents and opponents to the PTP law, so that you really got a chance to thrash out what had worked in other states and what didn't work in other states. So you tried to get grassroots help in drafting something so that it actually interviewed a psychiatrist that had practiced in New York for years and it was familiar with their law, could tell you what he liked and what he didn't like about the initial draft of the main law. You know, that you. You have a better chance, I think, of getting to be run as they wanted, you know, at our district court hearings, law enforcement or a medical professional or a guardian can file the application to have a PTP district court hearing. And the court notifies the parties involved, including the person. The court sets an attorney for that person so they are represented during the hearing. And so it's a judge. It's a decision of a district court judge after a hearing where there's give and take and questions and answers and challenges made to assumptions. Some states just have a PTP type or AOT order is just done administratively. Boom, the judge stamps it, and all of a sudden you're under a PTP court order. And that just doesn't have the effectiveness as the judge at the end of the hearing, looking at the young person saying, this is my decision. This is why you may have had six hospitalizations and you've been homeless and goes over the history and is what it's going to be for you going forward. You're going to work with an ACT team or a group home or intensive case manager in the community. We're going to try to get you a job and keep you out of jails and hospitals and see if we can start having some successes in your life. Judge also explains to the person that if you stop your treatment plan, you're back that evening in the hospital. They know that. And so they for the most part, not always, but they stay on their treatment plan and you can start to have some successes with them. And a psychiatrist told me, he says somebody with anosognosia, they're all probably always going to have antosognosia. If somebody's been on a one year PTP and was then extended for another year, he says I can sit down and talk with him. Use some. He called something he called backdoor insight. Mr. Smith, you, you probably don't feel any differently whether or not you've been on a treatment plan the last two years. But let's sit down and look at life the last two years and look at the two years previous to it and they begin to see that their life is different. It's more positive now. And because their brain chemical mixture is normal again.
- [21:55]
A
Yeah, that's really good to hear. Now when I started my podcast, I named it why Not Me? Basically what it means is that there's an individual type of situation here where one voice can matter. What would you tell a listener that decides they want to be an advocate? They want to believe that their single voice can make a difference and start something very positive. Where would you tell them to start? And then what would you tell them to do?
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B
Probably the first most difficult thing would be to not ridicule and laugh behind the person's back that's acting differently. Try to research what your laws are. Groups like the National Shattering Silence Coalition in Maine, the Brett Staples foundation website, research what are your laws in your state? What legislators in your state have sponsored brain disorder laws in the past. And so you can begin to know who to reach out to to speak about making things better. We're better than we used to be 15 years ago in Maine. But we're in the process now. It's not done yet, but this is a list of 35 tragedies that have happened in Maine from people off their treatment plans, every one of them, you can see they're unnecessary. We had a young man in Maine last year, started going to emergency rooms, begging for help, begging to be put on a treatment plan. All they did was keep him for two days, calm him down, dump him back out on the street. Eventually. He got so bad last fall that he attacked some people and broke a woman's jaw. And so now he's in jail. Now, this is somebody who was asking for help, had been on a treatment plan previous and had done very well. Wanted that again, things like this just make the hair stand up still in the back of my neck. That unnecessary. If you were suffering that bad with a disorder of your stomach, your bones or your skin, bang, you know what we can do? Get that person help. And this here, somebody has to beg for help. They still don't receive it. And so we've made a presentation in Maine to all the district attorneys of Maine about what the law is and how it can be used more effectively and used more than it has been in the past. And that, I believe, will bring about some positive change going forward. Because it's been better for them to step in early in somebody's history, especially if they've been in a hospital previous, get them the help they need or may not realize they need, but get them help before something bad happens that costs society millions and millions of dollars.
- [24:51]
A
Yeah. And that's a huge amount of money. In closing, what is one of the things that you would like to let our listeners know that gives them an insight of you as an advocate and of course, you as a representative on what you're trying to do to make things better for those that need the help?
- [25:13]
B
Just raising people's awareness that this is a biological disease of the brain. It is no different than any other disease of any other body part. Your chemical levels are not normal. More often than not, you're born in the dead of the winter. Nobody knows why. Open discussions with family members and school officials early on and medical professionals, even your primary care physicians, helping to direct them towards being on a treatment plan. We in Maine now have over 75 people that are in their early teens, many of them that are not on the treatment plan. We're paying untold millions to keep them in facilities outside the state of Maine because we don't have any facilities for young people in Maine. That's money. We should be keeping them in Maine. Having more community supports to prevent things from happening, not just reacting to them afterwards. The folks the very hard working folks that always in Maine have opposed this type of legislation. I think by now have realized that John Nutting is not going to back off and we're gaining numbers of parents and caregivers almost on a daily basis, growing our network of parents and caregivers and law enforcement that want to do better in this regard.
- [26:44]
A
Well this has been really good. A lot of great information, great conversation. I really appreciate you taking the time to join us today.
- [26:52]
B
Well look, thanks so much for having me on. Appreciate it.
- [26:55]
A
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 enjoyed 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 WhyNotMe World. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world.