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Sylvia Mignon: When Your Expertise Can't Save Your Child

• Tony Mantor

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Sylvia Mignon, licensed clinical social worker and professor of criminal justice, shares her heartbreaking journey navigating the mental health system while trying to secure proper care for her son with schizoaffective disorder. Despite her professional expertise, she's experienced nine years of struggling against bureaucracies that prioritize themselves over the needs of individuals with severe mental illness.

• Mental health systems and criminal justice bureaucracies often work to serve those within the system rather than clients and their families
• Many psychiatric professionals avoid treating severe mental illness, preferring conditions that respond better to medication
• Hospitals criminalize mentally ill patients they find difficult rather than transferring them to appropriate facilities
• Legal professionals need better education about mental illness to make informed decisions
• Massachusetts is closing psychiatric beds when many more are needed
• Most people with severe mental illness (75%) eventually stop taking their medication
• Support groups through organizations like Schizophrenia and Psychosis Action Alliance provide crucial help for families
• Online resources and books by family members of those with mental illness offer education and perspective
• Advocacy efforts include potential class action lawsuits against state mental health departments that fail patients

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

Speaker 1:

Welcome to why Not Me? The World Podcast, hosted by Tony 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 Mantour. Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining us today is Sylvia Mignon. She is a licensed clinical social worker and therapist, licsw, who specializes in clinical work with mental health clients, abuse survivors and individuals with substance abuse disorders and correctional population. She is also the author on textbooks with topics including substance abuse treatment, family violence, child welfare and mental illness. With her extensive expertise, we are thrilled to welcome her and look forward to her valuable knowledge she will share with us. Thanks for coming on. Can you give us information on what you do?

Speaker 2:

I'm a social worker, I'm a professor of merit of criminal justice. Pretty unbelievable that this is the work I do and how little I've been able to help my son.

Speaker 1:

Yes, unfortunately that does happen. Can you expand why it was that you got into this business?

Speaker 2:

Well. I grew up in a dysfunctional home. I chose a career of social work to try and help other people, and I was unable to help my father who was a chronic alcoholic. So after social work school and during social work school, I worked in the field of substance abuse treatment. My husband and I are both clinicians specializing in substance abuse, and I've always appreciated the power of extending a hand to someone in need to see the severity of mental illness, to see the severity of substance abuse among people, and I also had the experience of living for a year in Mexico and seeing extreme poverty there when I was 15. So I enjoyed teaching college courses in prisons, some of the most capable students I've ever had, and a lot of my career has been about talking about things that most people typically don't want to talk about.

Speaker 1:

Yes, unfortunately, there is a definite stigma that goes along with anything that's associated with mental health. So how do we change that with mental health? So how do we change that? What are some of the steps that you've taken? What have you seen that actually works to help us achieve what we're aiming for? How do we get to a place where people will focus on the individual and offer help, rather than getting with the stigma?

Speaker 2:

Well, there's so much to be done and my son, who has a schizoaffective disorder, is an example of someone with severe mental illness that even those who work in the field those who work in the field mental health professionals stigmatize people at the most severe end of mental illness. That's a huge problem, and we have stigma among those psychiatrists and others who purport to want to help the severely mentally ill. We've created bureaucracies that do not work on behalf of clients and families and families. The bureaucracies we create are designed to work for those who work within those systems.

Speaker 2:

As a professor of criminal justice, I can easily attest to how the criminal justice system works on behalf of judges, attorneys, probation officers, people who work in the system and don't have enormous or much regard for defendants and those who must come into contact with the system. I hark back to the work of a sociologist, max Weber, who did a lot of work on bureaucracy, and the idea of developing bureaucracy is about making work more efficient, how to get things done. But what's happened in the mental health field and criminal justice is that the bureaucracies work on behalf of themselves, leaving defendants, clients and their families without the help they need. So, yes, we need more education of how people who are different, people who need extra help and I fear we're going to see families without the help they need- how do we bring everyone together when each person holds their own views and ideas?

Speaker 1:

Often it's just a matter of perception People see things a certain way, even if that's not the full picture. So how do we shift that outlook and show what's really going on? And how can we encourage the bureaucracy to ease up a bit and be a little more open with with what can help the people that need it the most?

Speaker 2:

Well, we do that by modeling interventions and behaviors. I'm happy to say there are still a number of people working in criminal justice and in the mental health field who are committed to working with individuals and families. So we do that one client at a time. We do that by speaking out about the things that are not working well. I'll give you an example. In Massachusetts, the governor has decided to close a 16-bed psychiatric unit on Cape Cod called Potassant Mental Health. I worked with people who worked there over 40 years ago and now it's too expensive and now they want to cut the staffing. It shows incredible ignorance to think that Massachusetts can do with fewer psychiatric beds when many more are needed.

Speaker 2:

The other day there was the opportunity to come before officials and talk about what should happen. A lot of people came. They stood up, they spoke against this. They told the stories of clients and families who need these services. There were people who came in the flesh, people who came via Zoom. I was one of the Zoom folks. That's how I know. So standing up is a critical part of getting attention.

Speaker 2:

But I've also seen politically when people are so concerned about their own needs, when they don't have enough to eat, when they don't have adequate housing. It's very difficult to be concerned about problems of others, and that's what we seem to be doing in politics today. Rather than focusing on all that we have in common, some of the other things we do is we promote programs that look to identify the things we have in common. For example, I've practiced yoga for 39 years and I teach yoga at my local senior center. Yoga practices talk about the importance of coming together, of supporting one another, of being aware of what's happening around the world and staying engaged. Too easy these days to say I've got my, I got what I need. See you, bye.

Speaker 1:

Yes, unfortunately. I've said many times, this country is a country that it's not a problem until it affects our family. How do you think we can change the mindset of those that don't see the urgency or the need? Sometimes people have to realize it's not about our kids having mental illness. It can be the ones that surround them. It affects our families in so many different ways. With that said, it actually affects our whole community in ways that we don't see it sometimes. What kind of proactive steps do you think we can take to make a change that ultimately will help everyone?

Speaker 2:

I'm not optimistic about that happening in the current political climate. Those who are politicians could be willing to learn more about mental illness. Recently, when my son was in the hospital and they were not treating him appropriately and they were not treating him appropriately they began to charge him with assault and battery against other patients and staff. They were doing that intentionally, tony, to rid themselves of a patient they thought was very difficult this. My son belonged at the state Worcester Recovery Center where they had the staff to handle him, and this hospital could not arrange for him to be transferred.

Speaker 2:

I worked for months. I called the Commissioner of Mental Health of Massachusetts. I called the medical directors there. I worked very, very hard. Did I call my legislator? Absolutely Nobody cared enough. They looked the other way. Bringing 14 assault, battery charges against someone in psychosis is a real attention getter. It has resulted in my son being put in jail when he has severe mental illness. He had no history of violence prior to his stay in the hospital. So we're pointing out that this particular hospital was not willing or able to treat my son appropriately. They were not able to provide care, they were not able to get him to a place that could provide care, and so we need to work more at educating people who work with the mentally ill.

Speaker 1:

What were some of the things that you saw during your son's stay at the hospital?

Speaker 2:

Each time I went to visit my son, I ended up saying to the staff your staff is undereducated and undertrained to know what psychosis is, so that's a really important place to start. Historically, psychiatrists have not looked forward to treating the most severely mentally ill.

Speaker 2:

The most severely mentally ill are those with bipolar disorder and those with a schizophrenia spectrum disorder. Those who have a schizophrenia spectrum disorder about 1% of the global population. That means a lot of mental health professionals do not regularly come in contact with people with schizophrenia, unless they choose that as a specialty, unless they have that as a special interest. Same is true for psychiatric hospitals, the smaller private places. They want to treat depression, they want to treat anxiety with pills and they are not prepared for the most severely mentally ill. So we need to do more to prepare those mental health professionals and you may be aware, Tony, that the field of mental health treatment is moving in the direction of training more psychiatric nurse practitioners. They are much to engage with a severely mentally ill than the typical psychiatrist. It's become a sad joke. What's the difference between a psychiatrist and a psychiatric nurse practitioner? The psychiatric nurse practitioner is willing to hold you back. You know they're willing to engage and be helpful.

Speaker 1:

Well, at least we are getting some people out there that continue to try and do what they need so they can help.

Speaker 2:

Absolutely.

Speaker 1:

The bottom line is we just need people that are willing to get out there, step up and help any way they can.

Speaker 2:

We need people to step up and help and who know how to help. I'm the author of five textbooks. I'd love to have been a novelist, but I don't know how to do that. So I have two textbooks on substance abuse, I have a textbook on child welfare and my most recent book is called Social Work and Mental Health Evidence-Based Policy and Practice, and it's with Springer. So my book won an award and now I've just signed a contract to write a second edition of that. So as a textbook it will be used in social work courses, courses, bsw and MSW courses. I feel it's very important to put information out there, and I like Springer as a publisher because not only do they like the real world stories of what it means to have mental illness, what it means to be a family member of someone with mental illness Most people, as you know just don't know.

Speaker 1:

Yes, for sure, it's what I call the big unknown it is. I use that because I talk with a lot of people that are in the autistic communities?

Speaker 1:

Yes, and the thing that they go through is when they first find out their child is autistic. It's the big unknown. They don't know what to do, who to call. They are just totally confused and afraid of what to do. I see those with mental illness are the same. They are in the unknown and not sure what to do, facing a scenario that they never thought they would ever see. Yeah, so, with that said, what would you tell those families that are just first finding out that their child may have some mental illness? What are some of the basic steps to start?

Speaker 2:

It's hard to say what's the most important, but I would recommend going online. There's a lot of good information on schizophrenia and bipolar disorder online. There are books written by family members, even those who have someone with schizophrenia in their family. There are books and articles written by people who have schizophrenia. So there's the education piece, and then the next piece is the support, and then the next piece is the support Locating the people who understand you, locating the people who have been where you are.

Speaker 2:

I'm the queen of support groups. I've been doing four groups, so people who helped me when I started five years ago. Now I'm a facilitator for the Schizophrenia and Psychosis Action Alliance. Now I can pass on the wisdom I've acquired from others, and that's of critical importance. Today there are support groups for people who have schizophrenia and bipolar. Schizophrenia and Psychosis Action Alliance has really ramped up their support groups. They have groups for families. Now they're working to get a sibling support group. The National Alliance on Mental Illness offers support groups. There are local vendors of mental health services that offer support groups and they're free of charge, so that's huge.

Speaker 1:

Yes, the best thing that people can do is reach out to all these organizations and find out as much as they possibly can about it. You had mentioned your son. Can you give us a little information on him?

Speaker 2:

My son is 27. He's been sick for nine years. Our family has had nine years of hell trying to help him, tony, and just last week, from jail, he said you know, mom, I don't think all you're doing is really helping me. And I had to say I agree, I think you're right. I have worked tirelessly the equivalent of more than a full-on job, and as ill as my son is, he came forth with what I thought was an extremely meaningful insight.

Speaker 1:

So, in this situation, what can you do? You've tried everything, you've thought about everything. You look back and realize that everything that you've done has been for him.

Speaker 2:

What's the potential for the future? Well, I'm in between now. We were in court recently. I had a beautiful letter from Ann Corcoran to the judge about the importance of treatment. I was encouraged to write a letter to the judge myself just one page, which I did and when we went to court, my efforts were refused. I was not allowed to submit Ann's letter, I was not allowed to submit my own letter asking for mental health treatment for my son.

Speaker 2:

Now, why do you think a judge would refuse to get more information? Spending most of my career as an academic and a professor, I think having information is really important. Having facts, different points of view Isn't that something that we want to equate with justice and even-handedness and equity? I thought that was a pretty profound message there and it's a strong reminder. As Anne's letter pointed, out the importance of educating judges about mental illness, of educating defense attorneys, assistant district attorneys, prosecutors. The need is enormous.

Speaker 1:

Yes, I agree 100%. Judges, lawyers, everyone involved in a legal system needs to have a better understanding of mental illness and how to work within the system, but still come up with something that's going to help people.

Speaker 2:

So the more knowledge they have, hopefully, the better off we are off we are, but may not want to and may make a conscious choice to reject. It's painful, extremely painful, you know. Of course it's very painful to be in court with your child who's so ill, who's in shackles and handcuffs, looking horrific and being told what you have to say is not important.

Speaker 1:

Yeah, so in closing, what would you like to tell the listeners that you think is very important for them to hear? Some may be going through similar situations that you have seen, so what do you think is important for them to hear?

Speaker 2:

I think we've made the point and I'm sure most of your guests have the importance of educating yourself, the importance of picking and choosing what you choose to share with others, especially family. You know most people. I say my son has severe mental illness. I don't give the diagnosis because people find that frightening. They think someone with severe mental illness is going to be violent.

Speaker 2:

So we need to pick and choose, decide what we will share and do our real sharing with the support groups we choose to participate in. And let's remember that these national organizations, such as the National Shattering Silence Coalition, the word is spreading the advocacy when we can come together and work together. I'm working with a woman who's a dear friend now I met on the support group. We are trying to see whether it will be possible to bring a class action lawsuit against the Massachusetts Department of Mental Health that failed so many clients, so many of their families and I have to say, working in criminal justice, tony, I'm the least litigious person I know, but we know what we need to do. We know the importance of bringing people together who have been impacted, sharing the stories.

Speaker 1:

Yes, that's huge. I think that's a very good thing for people to get together, tell their stories. This way, they know they're not alone in their fight. The one common thing I hear from most everyone I speak with is how they think the system is fractured and it's just a nightmare to navigate through the whole thing for their children.

Speaker 2:

Yes, and you know, oftentimes experts say it's a broken system. Well, in reality it never worked. No one ever cared enough to have a smooth working system. If we did, we would have an adequate number of psychiatric beds in every state. There is no state that has an adequate number for those with severe mental illness, those who experience psychosis. Now we discriminate in terms of the availability of medications. Some of these medications, a shot can cost thousands of dollars. How many people have access to that? My son is one of those who needs to be medicated against his will In Massachusetts. While he did well in the group home for two years, he decided not to take the medication anymore. Seventy-five percent of people with severe mental illness come off the medication on their own, and you know what they said in his group poem it's his basic human right to refuse medication. We met with them. My husband and I begged them said you don't know what can happen. Basic human right.

Speaker 1:

Yeah, exactly. Well, this has been a great conversation and a lot of great information. I do appreciate you taking the time to come on.

Speaker 2:

Well, I appreciate you, Tony. You have so many skills. I enjoyed reading about you.

Speaker 1:

Well, just trying to take and do my part to make a difference, if I can.

Speaker 2:

And you are doing that. That's much appreciated.

Speaker 1:

Yeah Well, thanks for coming on. Like I said, I appreciate it.

Speaker 2:

Thank you very much.

Speaker 1:

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