Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Mietour, broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guest share their raw, howlful stories. We're going to show you how to make a strong, well-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. Inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mietour. Welcome to Why Not Me, embracing autism and mental health worldwide. We're taking a brief pause for the Thanksgiving holiday, and during this time, I'd love to share one of my favorite episodes from the last few months. I also want to wish you a very happy Thanksgiving. So joining us today is Ann Cochran. She is the Executive Director of the National Shattering Silence Coalition, NSSC, a powerful voice for those affected by serious mental illness, including the 8 million children and 14.2 million adults living with or lost to these conditions. Since 2017, the NSSC, a non-partisan alliance of family members, individuals with SMI, professionals, and compassionate advocates, has been driving change and raising awareness to perform health and criminal justice systems for those with SMI. We're honored to have her share her expertise with 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. Thanks for having me, Tony, and it's been great to collaborate with you and families and mental health advocates, chance to have the voices be heard. Well, it's my pleasure. So if you could, tell me how you got involved in this charity. So the National Shattering Silence Coalition, it was founded in 2017 by a woman, the name of Jean Gore, and unfortunately, she lost her battle to cancer about two years ago. I stepped up as executive director and had been involved with the organization for about two years at that point in time. And, you know, we've just really continued to grow from there. We're an organization made up of caregivers, peers, and professionals all looking to advocate to improve outcomes for those with serious mental illness in the families. So how have you seen your organization grow since you've taken it over? What are some of the differences that you've seen over the last few years? Well, I think that word is just getting out there, and we're doing a lot of educational awareness. We do peer and pro talks quarterly. We've developed several guides, one is the psychosis guide, the other is a caregiver guide. We've also done collaborations with people like yourself and humanities over handcuffs, but also with a we are now that's a digital platform magazine for social causes. We have done the Beyond stigma campaign, which features a story every month in their column showing that the reason that individuals to be on mental illness aren't getting the help they need goes well beyond stigma. And so we're really just trying to get our stories out there so that people can understand that it's discrimination and neglect that these individuals are facing because if you think about any other marginalized group, then how would we let someone become homeless, not treat them in a night of a hospital? There really isn't another group that I can think of that we treat this way. What are some of the things that you fight for for change? I mean, I know stigma is a big thing. I know the perception is a big thing. Those are just things that people see. What are you trying to change for people that's actually living it? Yeah, so that's a great question. It really isn't stigma. When we talk about severe mental illness and people with in psychosis, which means they have lost touch with reality, they can't choose to have treatment because they don't know and I know that you've know the word inner signaggia. They have no awareness into the illness. Therefore, they are not going to seek treatment. And that is the number one difficulty that families face and trying to get their loved ones help. This is such an example that I can tell you a woman that I'm dealing with in Massachusetts. She has a son, 49 years old, an office medications for over a year, completely psychotic. The threatening to kill and rape people most recently was going to take dumbbells outside and beat them because he was a creator. And this woman cannot get him help. So I've been working with her. I've called out Department of Mental Health. I called a co-response team to go out and evaluate him, you know, and I spoke in with the treatment team that was taking care of him every possible person. And two months later, he was still out in the community. He was recently arrested for getting an altercation with a group of people. And he's now sitting in jail in isolation, completely psychotic. And the lawyer, the public defender for her son will not talk to this woman because he hasn't done anything really that bad. We're going to try and get him out. So it's really like, what are we going to wait for a tragedy? Did it happen? And then we're going to turn around and say, well, how did that happen? Well, this is how it happened, of course, because this mother has been fighting to try and get her son help for over a year now and can't. Okay, so we brought this up several times through the month. I think for people that might be listening, they still need to know the differences. You bring up any signoia. Can you explain the differences between that and someone that's in like full-blown psychosis and psychotic? So, well, in a signoia is usually, you know, can be a part of psychosis and they really don't understand that they have an illness. And that really is a number one reason that people stop taking medication. So even when somebody, you know, might have gotten out of the hospital, they've been stabilizing on the medications. Well, they usually stop taking their medications and because they feel okay and they think, there's nothing wrong with me. And it's not very different than denial. It's not that they're denying they have an illness. They truly don't think that they're ill. And it's similar to somebody with Alzheimer's. They don't recognize that they have Alzheimer's. And it's sort of, you know, same way the brain works. These individuals do not think they're ill and it's a very real condition. And so what happens when they're off the medication, eventually they do go back into psychosis, which means they have lost touch with reality. What they are seeing and hearing, they 100% believe to be true. And we know that most people with serious mental illness are dangerous. That's true. But we also know that leaving psychosis untreated is a recipe for disaster because we don't know what someone is thinking and who've had Matt stick in his dad Michael on one about doing one about peer talks and Matt took the life of his mother. And when you listen to him talk about it and he's very open. He said, I loved my mother. He was not a violent person. He would never want to hurt her. But he truly believe that he had to take her life because she was possessed with demons. So why are we leaving, you know, people in the community untreated in psychosis when we know that they have lost touch with reality. You cannot predict at what point those delusions or hallucinations are going to become dangerous. Some people have commute hallucinations. We have another mom who her daughter was, you know, hearing voices telling her to kill her mother who she thought was an imposter and had raped her. So these are very, you know, it's very real to the person experiencing them and you can't tell them that it's not true. It's not happening. So we really need to treat psychosis as a medical emergency. It is. And unfortunately, so many of the laws don't allow us to do that. We have to wait until a person becomes dangerous before we can get them out. Another situation we had a family that reached out. One person reached out 35 times and that didn't include other family members. 35 times. Plus, so say let's say 50 times combined, they reached out trying to get their loved one help who was in psychosis and no one would help them. And unfortunately that, you know, led to lives being lost. So we're really is a blame when people are begging for help and you have the system, you know, folding them around and say, well, we can't do anything. They're not dangerous. So how do you get the legislators and the people that form these laws to change them if they don't understand? It really is through education. And we're seeing that in Massachusetts. Massachusetts is one of the last two states in the entire country without an assisted, ill patient treatment law. And what that would do, it would allow someone to be treated in the community before they deteriorated to the point that they needed in patient hospitalization. So what we're doing now here in Massachusetts is we have to wait until somebody gets so sick and then their hospitalized and we just have to hope and pray that a tragedy doesn't occur. And so with an assisted, ill patient treatment law, there's usually very strict criteria and very some state to state on what that criteria may be. It's usually that they have to have a certain number of hospitalizations have been involved in the criminal justice system, have a diagnosis of severe mental illness and a history of non compliance so that they know, you know, in all likelihood, if this person doesn't get help, then they are going to end up in the hospital. So in Massachusetts, really what it is because we had organizations like large mental health organizations that were actually against this because they were feeding the legislators false information. So what we have done is educate all of our legislators on what is happening and how many families are actually suffering and trying to get help when there is none and they truly didn't understand this information before. There was a recent retrial where a police office's life had been taken and during that retrial, I had the mom reach out to me and she said, well, you're not hearing in this trial and on the news is that my son had a long history of schizophrenia. Two weeks before this incident happened, I was begging the hospital to keep him and was told that no, we asked him. He doesn't want to hurt himself or anybody else. So again, I just think we really is a fall, you know, in that and I know that the family of this officer, they had no idea that this happened and I just think as people in the community, we should be outraged that our state is allowing this to happen because we have made it, you know, a public safety issue. When you have no means to treat people with serious mental illness and get them the help they need early on, we are putting everybody in the community at risk. It could be a neighbor. Yeah. So you say get more understanding, more information to these people. Unfortunately, we're a society that until it affects our families, not a problem. So we can't wait for it to affect some legislator, some judges or lawyers family to get them to say, okay, we got to change this. So how do we get to those people that are in charge now, but they don't understand. And because they don't understand, they're almost pleading ignorance to it and just moving forward like it's not existence. Yeah, so what I've done in Massachusetts, so we have a Darryl Harvard, which I know you have having on your show, he is a peer who is loved with schizophrenia successfully for over 40 years. He developed a wonderful guide to psychosis and psychotic illnesses appear perspective. So he explains exactly what psychosis is and what anti-sugnauzia is. I have used that pamphlet walked into DA's offices, explained to them, you know, gave them my elevated pitch of what's in that handbook and given them a few stories of the tragedies we've had in Massachusetts. And I can see it in their face. It's like a light bulb goes off and they suddenly understand why our state is failing terribly. And we're seeing all these tragedies happen in Massachusetts and I walk out with their support for this legislation. So it really is, you know, building those relationships and having these conversations with important, you know, people and our legislators as well so that they understand where, you know, why our law is not walking in Massachusetts and what needs to change. Why do you think that some of the legislators are kind of afraid to take this on because it does appear one of those things like, I don't know if I want to touch that subject tonight. Yes, well, you know, we're very fortunate that we do have some champion legislators in Massachusetts for mental health and that have filed, you know, these bills and supported them. A lot of it goes back to the disability rights, you know, folks because they will say, well, you know, somebody should have the autonomy to choose. But when we're allowing preventable suffering, that is not autonomy. That's neglect. Another example is a lot of individuals that end up getting put in our state hospital for competency restoration. They'll go in and they're in psychosis. And they have the CPCS lawyers fighting the air for their right to choose whether or not they want to be treated so they will keep going against the medical teams advice filing for extensions to post poorly civil commitments and leaving the individual in psychosis much longer than they ever should be. That really is the most inhumane thing you can do. And so you're talking about autonomy, but is that really autonomy when somebody is left in psychosis and is not competent in a many of these situations. Someone that might have gone in for a misdemeanor ends up committing a felony while in jail or in the state hospital, well, psychotic because they are really not in control of what they're doing. Okay. So there's a couple things I want to go over. But the first thing is I've heard that the biggest hospital in the country for mental health is the LA prison system. How do we change that? We're putting these people in prison with no medical people that don't understand it. And they're in there going through all the things that going through the guards think that being defined when they're really just going through the process of the mental illness they have. How can we get that changed? Yeah, and that is true. Our jails and prisons have become the de facto mental health institutions. And I know that because I've been speaking to a lot of the sheriff's and Massachusetts. And when I asked him, well, how many people in your jail have mental illness, the different numbers varying 70 to 90% is a number on getting that people have either serious mental illness and or substance use disorder. And that is extremely high. So while Massachusetts, well, pat themselves in the back for decreasing the number of people that are incarcerated are asked at webinars. You know, you're saying that you're closing jails, but can you tell me how many people in the jails now have mental illness and they don't have any answer that yeah, I don't know that they necessarily keep in track of it. But the child was smiling the prisons, they know that really it's really about early intervention and treating these individuals early on. And that's why we're advocating so hard for an AOT law in Massachusetts because that is going to be the thing that's going to catch people upstream before they even enter the criminal justice system. There's just no need for that to happen. And then we also talk about the need for more beds. If we treat a people earlier on, we are not going to be taking up those beds. We're waiting till people get so set that then they need to be hospitalized. And, you know, of course, that is then taking up beds. My failing is we're not going to need all those extra beds. If we're treating people earlier on and those beds can be left for the sickest people that need them for the longest time. Yeah, because at least in the legal system, if a person goes in front of a judge with some serious mental illness and then somehow they get divided out by a miracle, the chances of them non-treated of showing back in front of that same judge again is like almost like 95% that it'll kind of happen. How do we get at across to these legislators and judges and the ADAs and DAs that by working together and putting these people in a situation where they can have an opportunity to get better, that it's not only going to save a person's life, but it's going to save the taxpayers millions of dollars. Yes, absolutely. And that's been a challenge here is I've been trying to figure out and I've had conversations with some judges. How do I get in there to have these, you know, conversations and I know so on Massachusetts, we're different than a lot of other parts of the country. Our judges are not elected by the people. They are appointed by our governor. Okay. So, you know, I think that's very different there and they're not able to advocate for any legislation. So I still haven't figured out how to have these conversations with our judges, but I am working on having conversations and meetings with DAs, prosecutors, defense attorneys, because they really need to be some education there. I think so that they understand. I've sat in on a lot of trials because everything is virtual as well as in person. And I'll be amazed when I'm watching somebody's child going front of the judge and that I know has mental illness and has been in psychosis. And there is not oftentimes there is not one mention of the fact that by the defense or the prosecution that this individual has a serious mental illness. So what I try to do is empower people, families and teach them how to navigate the system and to encourage them to write letters. And, you know, really outside of the box thinking and I've discussed this with judges as well told them at one point, well, I have people write letters, even when they're not a victim in these cases, write a letter and give it to the prosecution. And the judge looked at me and he said, wow, that's clava. And he said, most of the time they will read that and that really has been an improvement outcomes for the families that we have been walking with. Now, what about the actual legal system? I'm assuming it's very similar because like with autism, if you get an autistic person in front of a judge, the judge doesn't understand it, the DA doesn't understand it, and lots of times the defense attorney doesn't understand it. And then they're at the mercy of whoever that wants to hand down the decision. Is it that same way with the legal system with this? Sometimes yes, and sometimes no. It falls on the families to educate the defense attorney, the prosecutor and the judge. It really does in a lot of these cases because they're not going to have that background information unless families get involved. And oftentimes families don't know that they're able to do that. No one tells you that you can do what it's not written anywhere. And that's why we developed a key. I give this guide to put these little tips in there because it is really outside of the box thinking and things that you can do. One of the things, you know, families will often feel like there's nothing I can do. And I always say this always something you can do. It might not be something that people often do. But we really need to be creative in the way we're dealing with the criminal justice system when your family members are involved because oftentimes it can mean the difference between them being incarcerated in certain time versus them being on probation and having mental health treatment. Now, lots of times the cycle happens like I just described they'll go in front of the judge. They'll get diverted out for some little thing. And then they wind up back in front of them again. Then the second time the judge has that mindset of, okay, I might throw the book at this guy because he doesn't get it when he really doesn't get the fact that the guy or the person in front of him has a serious mental illness. So when they wind up incarcerated, then that creates that cycle that is just detrimental to everybody involved. So we've got to get past that so that people can understand. And that's still at the judicial level, I would think. It is and I have to say we're doing, you know, I forget I'm not sure how many mental health courts we have a Massachusetts, but those seem to, you know, we do have them in some areas. So if you commit a crime in a city that has a mental health court, you're pretty lucky. If you don't then, you know, you might not be so lucky because you're right. The judges, the prosecutors, defense attorneys, they most of the time they don't understand it. And that's again, we have families need to be proactive and be in a state of emergency. And that's why we're involved because it's really our job to educate them because they're not mental health professionals. Why would they necessarily know if no one tells them? Right. So we've gone from the incarcerated to the judges to the DAs to the defense attorneys. Now, the big issue is I see it is a larger one that people don't understand. And that's the homeless situation. And you see down the streets and you see people living on the streets, you think that their bombs are this or that. And really a lot of them 9 out of 10. I don't know if it's that high, but I've heard it's high. Have mental illness of some degree. And they're there because they have no other place to go. So if we don't get that treated and that under control, then the rest of it from that point to the judicial system is going to be what it is. Yeah, in Tony, it's not all it's not necessarily because they have no place to go. It's because they are inside closest and don't want to be at home. I had another family that I was involved with NSSC. And their son was in complete psychosis after going off his meds left their house. I believe it was like, you know, in the middle of the winter. In the spring, he was found in downtown Boston, unable to walk really in pretty bad shape. And the family thought we found him. This is great. We'll get him in the hospital, get him back on his medications and hopefully things will improve from there that he went to the hospital was there. And I got a call from the dad two weeks later. Their son had died in the hospital from an infection. So he had a loving home. It was college educated. So it's not that these individuals have no place to live. It's an untreated psychosis that leads him to the streets. And that's pretty sad when we have solutions and we're again, we're allowing this preventable suffering. Yeah. So we've got to get where it starts. Ultimately, we always think about the legal system as being the bad guys and all that. And sometimes they can be. But the situation is we don't get it treated at a local level and get it under control. 19 and so 10. It's going to wind up in some legal system and then depends upon what happens on where they wind up in the final add. How do we get that entry level. So to speak situation under control. Well, I think that there really needs to be more of a focus on assisted outpatient treatment. Again, there's two states Massachusetts and Connecticut that don't have the laws. That doesn't mean that all the other states have great AOT laws or utilizing the way they should be. But my hope is is that we're going to strengthen these AOT laws. You know, it is very state by state. But yeah, and if we could see them expand not only in one county, but throughout the entire state. So that's going to be really a bad thing to do. It's going to take some time, but it can be done. It's not impossible. And with community behavioral health centers, I think that we're really in a good position to be able to do that. I know a Massachusetts. We have 26 community behavioral health centers. And so I see that as an ideal situation to pass an AOT law because they have basically these types of programs already set up within the community behavioral health centers for people that can voluntarily walk in and ask for these services. But we just need the mandate to provide them to those that are too sick to know that they need help. Okay, so now can you use other states legal statuses to maybe take to your legislators to show them that things need to be changed? Well, I mean, we do that, but it's finding a Massachusetts people will say they don't want to know what other states are doing. Like that's insulting to them. But yes, I mean, we do look at the cost savings. You know, was that human advocacy center, AOT symposium last month and there was someone from Alabama talking about the cost savings into their counties, one county they saved in one year, over $15 million. Can you imagine how many people we can treat and how many services with $15 million. Because think about it. You know, people cycling in and out of the hospital, people being arrested, the number of times someone appears before a judge. How long these cases go on? The individual's adamant, incarcerated. I mean, those we have high costs associated with them and it makes sense. The point I was going to make is the end result and the perfect example of that is tomorrow, which will be the last episode of this month. I have Cindy Murphy on. And that's the Tristan Murphy case to where he ultimately committed suicide in a jail. So can you use that because ultimately they work on a bill that will stop that. So can you use that and take that to these legislators and say, Hey, look, here's a perfect example of the worst case scenario. Why wouldn't you use this so that we don't ever see that? And again, you know, I think that we do some of that and we have some pretty horrific stories where somebody killed their mother and lit them on fire on their lawn. Another one, we elderly individuals, their lives would take in. And you know, so we have those horror stories, but in Cindy's case and by the way, the Tristan Murphy at did pass by the house and it's now being on the desk of the governor, which is great. I hope that the rest of the country can take a look at that and emulate what has been done there because that really is something so tragic and never should have happened. Cindy was a great advocate and ultimately had this law pass. It's going to be life changing for Florida in terms of mental illness. All right. So in closing, what would you like to let the listeners know that you think is really important that they know about what you're doing and what needs to be done? I would say that the let listeners know that there's always something you can do to reach out and connect with us. We can always help you navigate a system that you might not be familiar with. It's an SS coalition dot org and our stories are powerful and it's family stories that are going to help change these policies so that this neglect and discrimination ends. I think that these stories are what are going to touch the hearts of legislators and once again, you know, make that change that's needed. Yeah. Well, it's been good. I appreciate you coming on. Oh, and thank you for having me, Tony. I think you're starting a movement. People, you know, families want to tell the stories and you're giving them a platform to do that. So thank you very much. Oh, 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 whynotme. Our conversations, our inspiring guests, the show. You are not alone in this world. You
