Tony Mantor: Why Not Me ?
Embracing Autism/Mental Health Worldwide
Autism is a complex neurodevelopmental condition affecting millions worldwide, characterized by challenges in social interaction, communication, and repetitive behaviors.
Despite increasing recognition, there remains a lack of understanding and awareness about the condition.
Mental health encompasses a range of conditions impacting emotional, psychological, and social well-being, affecting millions globally.
It includes disorders like anxiety, depression, bipolar disorder, schizophrenia, and psychosis.
Schizophrenia is marked by symptoms such as hallucinations, delusions, and disorganized thinking, while psychosis involves a loss of contact with reality, often presenting with similar symptoms.
Despite growing awareness, stigma and misconceptions about mental health, particularly schizophrenia and psychosis, persist, underscoring the need for greater understanding and support.
From celebrating neurodiversity to breaking down stigma, we create a safe space for listeners to learn, grow, and feel seen.
Whether you're on the spectrum, a caregiver, or an advocate, join our global community for inspiring conversations and empowering resources that uplift and unite.
Tune in to embrace understanding, healing, and hope worldwide!
Together, we can create a more informed and compassionate society for individuals with Autism and Mental Illness.
Tony Mantor: Why Not Me ?
Ann Corcoran: Psychosis Isn't a Choice
Ann Corcoran, Executive Director of the National Shattering Silence Coalition, discusses the broken systems that fail those with serious mental illness and their families through discriminatory practices and neglect.
She shares powerful stories of families desperately seeking help for loved ones in psychosis, highlighting how outdated laws and policies create barriers to treatment until tragedy strikes.
• Explaining the difference between stigma and the true barriers to treatment for serious mental illness
• Exploring anosognosia - the neurological inability to recognize one's own illness
• Advocating for Assisted Outpatient Treatment laws to provide early intervention before hospitalization
• Illuminating how prisons have become de facto mental health institutions with 70-90% of inmates having mental illness
• Sharing concrete strategies for families to navigate the mental health and criminal justice systems
• Demonstrating how legislative change requires education and family stories to overcome misinformation
• Explaining how untreated psychosis, not lack of housing, drives many mentally ill individuals to homelessness
• Highlighting the cost savings ($15+ million in one county) when proper treatment replaces incarceration
Connect with the National Shattering Silence Coalition at nsscoalition.org to learn how you can help change policies that discriminate against those with serious mental illness or to get assistance navigating these complex systems.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me? The World Podcast, hosted by Tony Mantor, 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 Mantor. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis Special Event. Joining us today is Anne 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 nonpartisan alliance of family members, individuals with SMI, professionals and compassionate advocates, has been driving change and raising awareness to reform health and criminal justice systems for those with SMI. We're honored to have her share her expertise with us today. Thanks for coming on.
Speaker 2:Thanks for having me, Tony, and it's been great to collaborate with you on Humanities Over Handcuffs, giving families and mental health advocates a chance to have their voices be heard.
Speaker 1:Well, it's my pleasure. So if you could tell me how you got involved in this charity.
Speaker 2:So the National Shadow and Silence Coalition. It was founded in 2017 by a woman named Jean Gore and, unfortunately, she lost her battle to cancer about two years ago. The name of Jean Gore and, unfortunately, she lost a battle to cancer about two years ago. I stepped up as executive director and have been involved with the organization for about two years at that point in time, and 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 their families.
Speaker 1: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?
Speaker 2: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 a psychosis guide, the other is a caregiver guide. We've also done collaborations with people like yourself in Humanities Over Handcuffs, but also with Aware 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 with severe 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, where would we let someone become homeless, not treat them in and out of a hospital? There really isn't another group that I can think of that we treat this way.
Speaker 1: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?
Speaker 2:Yeah, so that's a great question. It really isn't stigma when we talk about severe mental illness and people 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 know the word anosognosia. 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 in trying to get their loved ones help.
Speaker 2:A perfect example that I can tell you a woman that I'm dealing with in Massachusetts.
Speaker 2:She has a son, 49 years old, been off his medications for over a year, completely psychotic, threatening to kill and rape people.
Speaker 2:Most recently he was going to take dumbbells outside and beat them because he was a creator and this woman cannot get him help. So I have been working with her. I've called our Department of Mental Health, I called a co-response team to go out and evaluate him, spoken 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 to 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.
Speaker 1: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 anosognosia. Can you explain the differences between that and someone that's in like full-blown psychosis and psychotic?
Speaker 2:someone that's in like full-blown psychosis and psychotic. So well, anosognosia 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 the number one reason that people stop taking medication. So even when somebody you know might have gotten out of the hospital, have been stabilized and on the medications, well, they usually stop taking their medications 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.
Speaker 2:And we know that most people with serious mental illness aren't dangerous. That is true. But we also know that leaving psychosis untreated is a recipe for disaster, because we don't know what someone is thinking and we've had Matt stick in as dad Michael on one of our doing, one of our 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 believed 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?
Speaker 2:You cannot predict at what point those delusions or hallucinations are going to become dangerous. Some people have command 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 or it's not happening.
Speaker 2: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 help. 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 led to lives being lost. So where really is the blame when people are begging for help and you have the system you know, folding their arms and say, well, we can't do anything, they're not dangerous.
Speaker 1:So how do you get the legislators and the people that form these laws to change them if they don't understand?
Speaker 2: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 outpatient 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 inpatient hospitalization. So what we're doing now here in Massachusetts is we have to wait until somebody gets so sick and then they're hospitalized, and we just have to hope and pray that a tragedy doesn't occur. And so with an assisted outpatient treatment law, there's usually very strict criteria, and it varies from state to state on what that criteria may be. It's usually that they have to have a certain number of hospitalizations or have been involved in the criminal justice system, have a diagnosis of severe mental illness and a history of noncompliance, 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.
Speaker 2:There was a recent retrial where a police officer's life had been taken and during that retrial I had the mom reach out to me and she said what 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 where really is the fault? 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 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 your neighbor.
Speaker 1:Yeah, so you say get more understanding, more information to these people. Unfortunately, we're a society that until it affects our family it's not a problem. So we can't wait for it to affect some legislator or some judges or lawyers, family to get them to say, oh, 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 non-existence.
Speaker 2:Yeah, so what I've done in Massachusetts. So we have Darrell Harbour, which I know you're having on your show. He is a peer who has lived with schizophrenia successfully for over 40 years. He developed a wonderful guide to psychosis and psychotic illnesses a peer perspective, so he explains exactly what psychosis is and what anosognosia 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 people and our legislators as well, so that they understand, where you know, why our laws aren't working in Massachusetts and what needs to change.
Speaker 1: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 or not.
Speaker 2:Yes, well, you know, we're very fortunate in that we do have some champion legislators in Massachusetts for mental health and that have filed these bills and supported them.
Speaker 2:A lot of it goes back to the disability rights 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 a state hospital for competency restoration. They'll go in and they're in psychosis and they have the CPCS lawyers fighting there for their right to choose whether or not they want to be treated. So they will keep going against the medical team's advice, filing for extensions to postpone these 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 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, while psychotic, because they are really not in control of what they're doing.
Speaker 1: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 they're going through. The guards think they're being defiant when they're really just going through the process of the mental illness they have. How can we get that changed?
Speaker 2:Yeah, and that is true. 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 sheriffs in Massachusetts and when I ask them well, how many people in your jail have mental illness? The different numbers varying 70 to 90% is a number I'm getting that people have either serious mental illness and or substance use disorder. That is extremely high. So, while Massachusetts will pat themselves on the back for decreasing the number of people that are incarcerated I've asked at webinars you know you're saying that you're closing jails, but can pat themselves on the back for decreasing the number of people that are incarcerated I've 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 an answer.
Speaker 2:Yeah, I don't know that they're necessarily keeping track of it, but the journalists running the prisons, they know it's really about early intervention and treating these individuals early on, and which is 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. Well, if we treat people earlier on, we are not going to be taking up those beds. We're waiting till people get so sick that then they need to be hospitalized, and you know, of course, that is then taking up beds. My feeling 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.
Speaker 1: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 diverted 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's gonna happen. How do we get it 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?
Speaker 2: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've been trying to figure out and I've had conversations with some judges how do I get in there to have these conversations? And I know so. In 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, ok, 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 there really needs to be some education there, I think, so that they understand.
Speaker 2: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 go in front of the judge and that I know has mental illness and has, you know, 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 I 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, well, that's clever. And he said most of the time they will read that and that really has been improving outcomes for the families that we have been working with.
Speaker 1:Now what about the actual legal system? Yeah, 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?
Speaker 2: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 it. It's not written anywhere and that's why we developed our caregiver's guide to put these little tips in there, because it is really outside of the box, thinking in things that you can do, one of the things you know. Families will often feel like, well, there's nothing I can do, and I'll always say there's always something you can do. It might not be something that people often do, but we really you, we really need to be creative in the way we're dealing with the criminal justice system when family members are involved, because oftentimes it can mean the difference between them being incarcerated and serving time versus them being on probation and having mental health treatment.
Speaker 1: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 him again. Then the second time the judge has that mindset of okay, I might as well 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.
Speaker 2:It is and I have to say we're doing. You know I forget. I'm not really sure how many mental health courts we have in 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 most of the time they don't understand it. And that's again where families need to be proactive and be 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?
Speaker 1:Right. So we've gone from the incarcerated to the judges, to the DAs, to the defense attorneys. Now the big issue, as I see it, is a larger one that people don't understand, and that's the homeless situation. When you walk down the streets and you see people living on the streets, you think, oh, they're bums or this or that. And really a lot of them nine 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.
Speaker 2:Yeah and Tony, it's not necessarily because they have no place to go, it's because they are in psychosis 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. But 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. He was college educated. So it's not that these individuals have no place to live. It's an untreated psychosis that leads them to the streets and that's pretty sad. When we have solutions and we're again, we're allowing this preventable suffering.
Speaker 1: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, if we don't get it treated at a local level and get it under control, nine chance out of 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 end. How do we get that entry level, so to speak, situation under control?
Speaker 2:Well, I think that there really needs to be more of a focus on assisted outpatient treatment.
Speaker 2: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 utilize them 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 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 hard 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 in 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.
Speaker 1: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?
Speaker 2:Well, I mean we do that, but it's funny in 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. I was at Human Advocacy Center AOT Symposium last month and there was someone from Alabama talking about the cost savings in two of 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 individuals that are incarcerated, I mean those have high costs associated with them and it makes no sense.
Speaker 1:The point I was going to make is the end result, and the perfect example of that is tomorrow, which will be the last 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?
Speaker 2: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, the elderly individuals. Their lives were taken. So we have those horror stories. But in Cindy's case and, by the way, the Tristan Murphy Act 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. But Cindy was a great advocate and ultimately, had this law passed, it's going to be life-changing for Florida in terms of mental illness.
Speaker 1: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?
Speaker 2:I would say that to 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 nsscoalitionorg, 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, and 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.
Speaker 1:Yeah, well, it's been good. I appreciate you coming on.
Speaker 2:Oh, and thank you for having me, tony. It's again. It's been a wonderful collaboration and I hope we can continue, because I really think you're starting a movement. People you know families want to tell their stories and you're giving them a platform to do that. So thank you very much. Oh, it's been my pleasure. Thanks again. So thank you very much.
Speaker 1:Oh, it's been 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, world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.