By Bradley Nuimano Tarr
At the age of eleven, I began showing signs of having a serious brain disorder (SBD), commonly referred to as a serious mental illness. Until age twenty-six, I cycled in and out of hospitals well over twenty times because of my symptoms. My participation in an Assisted Outpatient Treatment (AOT) program gave me my longest period of stability.
My symptoms first emerged in the fourth grade when I experienced depression. I was sent to a hospital for two weeks and placed on medication.
Then, from ninth to twelfth grade, I experienced suicidal thoughts, insomnia, paranoia, and mania. One psychiatric medication I was on made me so rageful that I ended up punching several holes in my mom's cabinets and walls. I believe it was a side effect because I had been having a good day until that point, and the anger was entirely unprovoked. My diagnosis during this period of my life was bipolar or unspecified mood disorder.
Four years later, while at college studying philosophy and humanities, my symptoms flared up again. I had gone three days without sleep, had angry outbursts over relatively inconsequential matters, and behaved in a very paranoid manner. I was even pacing around campus, talking to myself. At my worst, I threatened to harm other people because I was convinced they were conspiring to hurt me. My behaviors were so concerning that I ended up spending fourteen days in a New England hospital before returning home.
Within four weeks, my symptoms scared my mom so much that she dropped me off at the front door of the county hospital. My mom tells me she was afraid that I would hurt her. In case my delusions or hallucinations flared up in the middle of the night, she would lock her bedroom door as a precaution. Although I never considered harming her, I understand where she was coming from.
My grasp on reality was tenuous, and I became illogical. It is hard to reason with someone seeing, hearing, and smelling things that are not there. My mom could not cope with me and continue to share an apartment with me. I had to get out.
In the winter, I became homeless. I had estranged myself from my family. Not even my siblings knew how to cope with me. A homeless shelter operated by a local mental health agency took me in. For about a month, I survived in quarters that were crowded and cramped. I lived there with about a dozen people, many of whom were far sicker than me. After several days of being verbally threatened and bullied by others, I punched a hole in the shelter's wall. This landed me in fourteen months of intensive probation through the mental health system. I had to pay nearly $1,000 in restitution for the hole in the wall.
Thankfully, my mom took me back into her house. But that was a small solace. While on probation, I had to manage several things at once. I had to report to the local municipal court building two or three times per week for random drug and alcohol tests. I had no car and if I couldn't get a ride to the building about seven miles away, I would be forced to walk there. I walked regardless of the weather, which was often freezing and stormy. While on probation, I also had to go to psychotherapy, anger management classes, schizophrenia classes, psychiatric appointments, and court hearings with the judge, all of which were scheduled frequently. If I missed anything, I would have automatically spent a month in jail. To my relief, I eventually graduated from probation.
Two years later, I again entered a symptomatic phase, which was the worst of my life. From February to May 2019, I was hospitalized five times in three months. I was depressed, then manic, then depressed again. I had severe bouts of insomnia, paranoia, and delusions.
I believed I was the director of the National Security Agency. Another time, I thought I was the Secretary of Defense. I saw all things around me as coded messages from the government. For two weeks, I was a 007 agent. I thought I was encountering MI-6 agents almost everywhere I went. They were even dispersed and scattered throughout the crowd during Mass at Church. For a week I just knew that I was a member of the Roman Curia, an advisor to the Pope. I thought I was married to my high school sweetheart.
I had visual, auditory, and olfactory hallucinations. I was convinced for about three weeks that my mom smelled like an open sewer. I was terrified of her. For a week after that, I kept hallucinating that I was vomiting all over my room, but my mom said I hadn't. This made me distrust her even more.
After three months, AOT entered my life. And it turned my whole life around for the better. I was brought before a judge who organized a team of well-trained experts around me. I was gifted with a new psychiatrist. Finally, I was diagnosed with schizoaffective disorder.
As another integral part of my AOT treatment team, I was given a case manager. He met with me every fourteen days. He counseled me and helped me to establish and stay grounded in my goals. My case manager took me anywhere in the county that I needed to go. He not only managed my reports to the local mental health agency on my updated improvements and goals, but I also considered him a life coach. He was the first person I called if I was having a bad day, and the first person I informed if I experienced that my psychosis or insomnia were getting bad and taking hold.
For a while, until I no longer needed it, I was given a psychotherapist, who helped me organize my thought patterns and maintain a healthy outlook. The team also coached me on how to slow down racing thoughts, and on how to prematurely catch, and root out, the beginnings of delusions.
For around sixteen months, once a month, I reported back to the judge. The AOT team invested in me. They didn't just label or categorize me. They saw me as a person, not just as a case study. The approach of AOT is holistic, the whole person not only recuperating for a time, but being formed into a rhythm of continuous healthy living. I graduated from AOT.
AOT brought me from a hopeless recycling of symptomatic episodes to a place where I could anticipate instability and counteract it. AOT even gave me the tools to educate my family about my condition. They now know if I'm symptomatic. For instance, I always report if I went the previous night without sleep to my mom. And we have a standing protocol that if I go three nights in a row with very little, or no sleep, we immediately call a squad to check me out and notify my psychiatrist for an emergency appointment.
These are all things that I wish we'd had in place as preemptive measures since I was eleven. It took AOT to educate us on catching symptoms early. AOT should be implemented nationwide. Unfortunately, many counties and even three states (Massachusetts, Maryland, and Connecticut) lack AOT. The AOT program communicated to me, "It is not your fault that you're in this mess. You merely have a sickness. But we are here for you. We'll help you get, and stay, out of it." Without a doubt, this type of treatment saves lives, as I believe it saved mine.
By Kerry Martin and Lucia Martinez Rojas, Accelerating Social Good
We, The Living, Must Shine a Healing Light on Silence, Shame and Stigma: Interview with Child Psychiatrist, Artist and Poet, Diane Kaufman, MD
HOPE LIVES. SHAME KILLS.
EVERYDAY IS SUICIDE PREVENTION DAY FOR DR. DIANE KAUFMAN, MD.
Kerry: As suicide survivors and mental health advocates, Lucia and I both so deeply appreciate your tremendous body of work in suicide prevention. Your award-winning poems, songs, posters, videos and even an opera have inspired hope, encouraged people who are hurting to reach out and offered solace to those who have lost a loved one to suicide. Can you tell us why suicide prevention plays such a prominent role in your life and work?
Diane: In August 2019, my friend and mental health colleague Stacy ended her life by suicide. Her tragic death was and still is a shock to me. Stacy was a psychiatric nurse practitioner of great skill and compassion. I respected and admired Stacy for having so many positive qualities.
I used to tell myself, if a family member of mine needed care, I would send them to Stacy. Her taking her own life and leaving behind two sets of young twins was absolutely one hundred percent out of character for Stacy – the woman, friend, and mental health professional - that I knew her to be.
What ended Stacy’s life – what devoured, destroyed, and killed her – was depression. Even as I say these words, tears come to my eyes. I still can’t believe she is gone. Depression is a physical illness that invades the mind, body, and spirit. And, it can kill.
In the early weeks of grieving Stacy, I saw a tree that had shoots coming off of its lower trunk. I took a photo of that tree and wrote the words:
“Just like this tree, we all yearn to grow. Hope lives. Shame kills. Everyday is suicide prevention day. Take care of yourself and may you grow ever stronger in your love.”
I shared the photo and my words with artist Amanda Meador, and suggested she design a poster. This is how “Just Like This Tree” was born and became the first in a series of “Creative Life Lines” suicide prevention posters.
Creative Life Lines reaches out with compassion and creativity to help save lives. Stacy’s death was the pivotal event.
There, however, have been other significant events. When I was a medical student, I attempted suicide, and was medically hospitalized. When I was married, my father-in-law killed himself by gun shot. My teenage patient, who seemed to her mother, her teachers, and to myself to be doing so well, hanged herself in 2016. The best friend of my young adult patient died by overdose in 2020. My patient, who had her own history of suicide attempts (prior to when I began treating her), found her friend, and then became at increased risk for suicide herself. All of these tragic events have transformed me into a suicide prevention activist.
POETRY TRANSFORMS DEPRESSION AND DESPAIR INTO HEALING AND HOPE
Lucia: Why do you choose to express yourself through poetry? And, what was the impetus behind writing the poem, “Don’t Give Up” which you would later turn into lyrics with a song-writer and then two Suicide Prevention Public Service Announcements (PSAs), both a one minute version and a longer five minute version, in hopes that people would share the PSAs far and wide to help those who were struggling?
Diane: I turn to poetry to express myself when I am feeling overwhelmed by thoughts and feelings. It’s a way to safely get what is inside of me – what’s troubling me – out into the world and onto a page. It often feels like the poem is a living thing wanting to communicate and be expressed, and I am the one listening and holding the pen to let it out – to be taken in and experienced by another.
“Don’t Give Up” was an outpouring of my heart listening to the sadness, depression, despair, and suicidality of my youth patients. It’s a conversation with a suicidal person. The poem is saying even though you want to kill yourself, please don’t do it because I understand how you feel, and I know that your choosing death is not the answer. There are reasons for you to keep living and people who truly care and can help you.
HOW DO WE CONVINCE THOSE FEELING HOPELESS TO NOT GIVE UP?
Kerry: There is a quote by Hal Lindsey, “Man can live about 40 days without food, about 3 days without water, about 8 minutes without air, but only for 1 second without hope.” Not surprisingly, hopelessness is the leading predictor of suicide. Speaking as a suicide survivor, I can certainly attest to that being the case for me. For months on end, I battled with feeling like there was no hope that anything was going to get better, no hope I was going to feel anything other than this unbearable sense of loneliness, bleakness and foreboding, no hope for a better tomorrow … really that there was no hope for me. And, then to see those I love seeing me that way and not knowing how to help me was just too much to bear. I was not only hurting but I was hurting them. How do we get people to not give up and give into these feelings of hopelessness?
Diane: The first line of the poem/lyric is “Don’t give up even though you want to.” Many people – maybe all people – have at times felt like giving up - wishing they were never born, wishing they could just sleep forever, wishing they could be dead, and for some – wanting to end their emotional pain by killing themselves.
I want the person listening to the song to feel the song is being sung just for them. For them to know they are not alone in feeling hopeless, and yet also to know that this day is not forever, there will be another day and life can change for the better. As long as there is life and there is help available there is hope.
Suicide is forever. The severe emotional pain coming from depression and/or severe life stressors can be helped, lessened, and improved while we are still alive. We don’t have to kill ourselves to stop the pain.
I know this to be true as I have lived it. When we are depressed, our thinking gets distorted and it’s as if all we see is darkness. It’s important to be compassionately reminded that, “There will be a better now even when we don’t see how” and that “Tomorrow’s light is a gift from the night.”
WHAT MORE CAN WE ALL BE DOING TO HELP OUR CHILDREN STRUGGLING WITH THEIR MENTAL HEALTH?
Kerry: Given your specialty is child psychiatry and you see in your practice teens who struggle with suicidal ideation or who have attempted to take their own lives, what more do you think we need to be doing to help our kids given suicide rates are increasing in this demographic?
Diane: In October 2021, the American Academy of Pediatrics, American Academy of Child and Adolescent Psychiatry and the Children’s Hospital Association declared a national emergency in youth mental health. This declaration should inspire and galvanize us to collaborate on behalf of youth mental health by improving access, services, and resources.
We need more mental health providers and services available. We need more in-patient psychiatric beds available, as well as a higher level of care and specialty programs.
Social media can damage youth mental health when self-worth is judged by “likes” and when sense of self and self-esteem plummets by negatively comparing ourselves to online profiles of others. Youth need healthy social connections and to experience themselves as worthwhile.
They need caring adults who will ask the questions – “Are you okay? Are you feeling anxious and/or depressed? Are you thinking about hurting, cutting, and/or killing yourself? You can tell me because I care about you.”
Youth need to know there is no shame in seeking help and that mental health is physical health and help is available. Mental health education should be integrated into all school settings.
There are skills and coping strategies we all need to learn and practice. We also need to understand the warning signs of mental illness so we can better recognize when things are not okay with us.
HONORING AND PRACTICING THE HUMAN ART OF CONNECTION TO PROMOTE MENTAL HEALTH AND NUTURE RESILIENCE
Lucia: Diane, you have also worked for many years as a Child Psychiatrist back East and now in Oregon, and have extensive training in the therapeutic use of poetry, art, and story. Now, as Founder and Director of the Arts and Healing Resiliency Center at Mind Matters, PC, how are you working to eliminate silence, shame, and stigma to prevent suicide?
Diane: Mental health well-being can be nurtured in many different ways. I have Bipolar II Disorder, attempted suicide as a young adult, and became a child psychiatrist. Sharing my story helps break through silence, shame, and stigma.
I am an ASHA International storyteller and am on their Board of Directors. It’s a great organization that highlights the “superpower” of our personal mental health stories.
The expressive arts can also play a vital role in facilitating and fostering mental health. The inspired mission of the Arts and Healing Resiliency Center is to honor and practice the caring art of human connection. The ARTS Program, our unifying concept, inspires Adolescent and Adult Resiliency Training as well as Skills and Support by interweaving evidence-based mental health skills, positive psychology principles, and the creative arts to promote, nurture, and build mental health and life affirming resilience.
The goal of the program is a felt sense of personal integrity, authenticity, and responsibility leading to social-emotional and behavioral well-being. We offer online workshops, special events, mentoring, and therapy.
Creative Life Lines, the community outreach facet of the Arts and Healing Resiliency Center, is dedicated to suicide prevention and offers posters, songs, and stories as healing resources.
Through my own creativity and collaboration with other artists, I hope to continue to address mental health themes such that a healing light shines on all and silence, shame and stigma is banished.
To learn more about the Arts and Healing Resiliency Center and Dr. Diane Kaufman, please visit Mind Matters, PC.
Kerry Martin, CEO and Founder, Accelerating Social Good, and Lucia Martinez Rojas, Social Media Strategist and Videographer, Accelerating Social Good with guest Diane Kaufman, MD, Child Psychiatrist, Humanism in Medicine Awardee, and Founder and Director, Arts and Healing Resiliency Center, Mind Matters PC.
Like the blog authors, Dr Diane Kaufman, MD, Kerry Martin, CEO and Founder, and Lucia Martinez Rojas, Social Media Strategist and Videographer, both from Accelerating Social Good and both also suicide prevention activists, we at National Shattering Silence Coalition believe everyday is suicide prevention day. We are currently running a 'Still Here' suicide prevention campaign to raise awareness about our public epidemic of suicide. At the highest risk of suicide are those with a serious brain disorder, commonly referred to as a serious mental illness. To listen to stories from those who have lost someone to suicide and to learn more about how you can help, please visit 'Still Here'.
#suicideawareness #suicideprevention #stopsuicide #endsuicide #nssc #treatmentbeforetragedy #seriousmentalillness #seriousbraindisorders #bipolar #schizophrenia #mentalhealth #mentalhealthcare #mentalhealthawareness #mentalhealthcarereform #parity #abedinsteadD #justice4sbd #righttotreatment #hipaahandcuffs #lifelongcare4sbd #parity4sbd #fundingequity #nationalshatteringsilencecoalition #shatteringsilence #stillhere #hope
Power in Purpose
By Pat Morgan
In 1983, I answered the call from my church’s priest, whose compassion for homeless people and his work to help them in Memphis (and nationally) defies description. The scene when I walked into Calvary Episcopal Church’s elegant “great hall,” was stunning, but not because of the massive chandelier or the red velvet drapes at the windows. Seated in the solid oak chairs along the wall were about a dozen ragged, forlorn, and sickly men. I had been a real estate broker, banker, and elected official in the county government previously. So, not much prepared me for the hardship and illnesses I was about to encounter.
I’d seen a lot of poverty in my life, lived some of it when I was a child, and worked to help end some of it as an adult. I knew more than I’d ever wanted to know about addiction, having learned some of the most important parts (too little and too late) at Al Anon. I knew a little about brain illness, commonly referred to as mental illness, and nothing at all about the mental health system. Although nothing works to end homelessness without housing, it became painfully clear to me that homelessness is about a LOT more than the lack of affordable housing. Serious brain illness can contribute to homelessness. When people are unable to meet ordinary demands of life and cannot attend to their basic biological needs due to illness, loss of housing can ensue.
For the next five years, I spent almost every weekday afternoon talking with, and later assessing, the needs of our visitors while helping to develop, and then directing, always as a volunteer, Calvary’s “Street Ministry.” During those years, hundreds of people, primarily men, walked, staggered, stormed, slipped, or were so intoxicated or psychotic that they half-floated through our doors and into our hearts. At least a third were mentally ill and more than a few were actively psychotic. We listened, learned, provided vouchers for shelter, personal needs, bus tickets, or prescriptions when there were no other sources. While I cared deeply about all of them, a few, usually those who were clearly mentally ill, stole my heart and then broke it, and would finally send me on a decades-long battle to secure for them the inpatient treatment they desperately needed. They didn't necessarily want it, and rarely, if ever, received it.
The director of the state's acute care mental hospital in Memphis had finally tired of my impassioned (or desperate, heartfelt, consistent) appeals, and told me what I didn't want to hear. "Pat,” he said, “You know they’re committable and I know they’re committable, but I can't say it, because if I were to commit them, the stark reality is I simply don't have enough beds.” He wasn’t just talking about furniture. He needed staff.
I needed to know why he couldn’t get what he needed. It would take decades, but along the way I’d learn about why our mental health system, locally, statewide, and nationally, was so broken. Thankfully, two of Memphis’ mental health centers began sending us crisis specialists to help our visitors, who’d acknowledge that they were suicidal or homicidal, get the three-day inpatient treatment they desperately needed in the new crisis unit, with follow-up services. They were remarkable, and I learned a lot, but not enough.
When Alepeachie, my all-time-favorite homeless person and only "success story" was found dead in the apartment the crisis specialists had found for him, I “lost it.” Alepeachie had slept in a series of cardboard boxes near a downtown church for years and it had taken months (and a lot of KFC) for me to gain his trust, which was easily transferred to the crisis specialists. I'd seen him a few days before and he'd looked good, but when I asked him how he was doing, he'd said "I don't hear the voices telling me to kill myself anymore, but my life is so empty I still want to kill myself." I’d meant to call the crisis specialists but had simply forgotten by the time I got home. This was before smartphones had been invented.
Devastated at his funeral, I vowed that I’d never stop trying to help people with serious brain illnesses. That promise would lead me back to college (at age 48) and then on to Washington, D.C., for a semester in American Politics. My new career path led to a presidential appointment as a program specialist in the U.S. Interagency Council on Homelessness. Returning to Memphis some years later, I continued working on homelessness, with a special focus on those with serious brain illnesses.
I am now retired, but remain a passionate and dedicated advocate for people with serious brain disorders who captured my heart so many years ago. And I vow to continue for as long as I am able. I am honored to serve as an advisor and advocate for the National Shattering Silence Coalition.
Pat Morgan has worked to help homeless people, especially those with serious brain disorders (SBD), commonly referred to as serious mental illnesses (SMI), for decades. Her experience includes serving for five years as the unpaid director of a church-based "Street Ministry" to homeless people, seven years as a presidential appointee to the staff of the U.S. Interagency Council on Homelessness during the Clinton Administration, and ten years as the director of Partners for the Homeless in Memphis, TN. Upon her retirement, her volunteer work focused on homeless people with SBD through the Room in the Inn program in Memphis. She is the author of two books, “The Concrete Killing Fields,” and “We Hardly Knew Them, How Homeless Mentally Ill People Became Collateral Damage.” A relentless advocate, both books include multiple stories about her work with homeless people suffering from SBD and call for major changes in our mental healthcare system to meet their needs.
By Nancy Boucher
I have always had an interest in the wilderness of the mind. I’m no stranger to serious brain disorders, commonly referred to as serious mental illnesses. Both my maternal grandmother and my uncle died with diagnoses of serious brain disorders in state hospitals.
I also grew up with two older siblings with diagnoses of serious brain disorders. My older brother gravitated especially towards me when he was having intense symptoms, weaving me into his delusions. And at an early age, my mom sought out my help in supporting both. She even offered me money to counsel my sister Theresa. I often lent my support to my siblings and my mom. The support took many forms.
During the early years of our marriage, my husband and I started a business called Nancy's Fruits and Veggies. One day I took Theresa to work with me. Before we got out of the car, she told me as she was looking into the rear-view mirror that she had four eyes. I naively tried logic, to no avail. After about a half hour of hanging out with me at the stand, Theresa said she had to leave, and off she went! I was alone and responsible for keeping our fledgling veggie and fruit stand open. This was not during the time of cell phones, so it was only after a full day of work that I learned my sister had made her way home. She traveled about four miles, but only after stopping at a stranger’s and asking if she could take a shower.
Over the years, and thankfully, my sister’s illness eventually stabilized with medication. Theresa had a gifted, kind-hearted, and brilliant psychiatrist who always took time to see her.
After our parents passed, Theresa lived in the family home alone—a tiny bungalow where my seven sisters and I had slept four to a bed. My sister was everlastingly committed to family. She cared about and welcomed everyone in our family, even those who had serious issues, into her home. She never excluded or abandoned anyone in need.
Theresa had a heart of gold. The way she lived her daily life exemplified compassion and acceptance. I was the student, and she was the teacher. Simply knowing her helped me immensely in my profession as a behavioral specialist in special education classrooms. Theresa taught me that I had to see each of them to reach them, and I had to reach each of them to teach them. I learned, too, that the richest resource for me in helping them were their family members. So, I reached out to meet with them, seeking their knowledge, experience, and insight. It was an incredibly rewarding job.
I learned that a unifying concern for families was the impact of this child on their other children. So I started a sibling support group that was powerful for all involved. We always began our group meetings by having the siblings put their dominant hand behind their back and work together to pass a package of lifesavers to share with each other. This simple activity demonstrated a lot.
In my immediate family it took me so long to see the heartbreaking impact of serious brain disorder on my son, Clem—my beautiful, sensitive, charming. smart, capable boy.
I kept trying to guide and teach him like I had always done alongside his brother. Once they were in high school and were going out at night, I always said the same thing to them—be safe and be kind.
About eight years into Clem’s illness, when I made a request of him, he said, “Mom, it’s like you are asking a 2-year-old to go grocery shopping for the family.” Even then, he was educating me about the impact of his serious brain disorder. I didn’t realize it at the time, but he was the teacher and I was the student once again.
Over the years, there have been many times when his dad and I have set out with good intention to try to teach Clem good habits to keep his body and spirit healthy.
For example, COVID has been especially challenging for Clem. He’s been isolating, going deeper into his mind. And he’s smoking more. More specifically, he’s smoking half of a cigarette, then squishing it out. We are buying more cartons and spending a lot more money each week, trying to keep him supplied with that de-stressor.
His dad tried to set up a new system for Clem. He gave an ashtray with sand to him, where he could snuff out the cigarettes gently and then smoke them all the way down before lighting another. It didn’t work.
Then I remembered to watch the student and follow his lead. Our efforts, advice and attention to the issue were creating more pressure on him.
To even begin to understand, I imagine that I am bed-bound from a catastrophic illness. It has bruised my brain and changed what I can do. I must leave behind what I once loved doing, and what defined an essential part of who I once was.
These are the lessons that have been given to me from the wilderness of the mind. Stand beside loved ones with no judgment. Support them with patience and compassion. And love without measure. I thank my family for these gifts.
How Do We Protect Our Adult Children With Serious Brain Disorders In a Broken System?
As parents, we bring children into this world knowing it is our job to protect them. Unfortunately, when my young adult son, Jack, was diagnosed with a serious brain disorder (SBD), commonly referred to as serious mental illness (SMI), I found myself helpless to keep him safe. The current laws in my home state of Massachusetts frequently result in incarceration, violence, and homelessness, leaving many of those with SBD to die prematurely, rather than receive the treatment they desperately need.
As I watched multiple gut-wrenching tragedies unfold on the news over the past year, so many related to untreated SBD, I knew there has to be a solution. With a Google search, I found the Treatment Advocacy Center and learned about Assisted Outpatient Treatment (AOT). I’d never heard of it.
AOT provides community-based psychiatric treatment under a civil court commitment. It is a means of engaging an adult with SBD who struggles with voluntary treatment adherence. It focuses the attention of treatment providers on the need to keep the person engaged in effective treatment. I have become a strong advocate for AOT, the compassionate care credited in helping so many with these devastating illnesses in their ongoing recovery. Yet, AOT is something my state of Massachusetts does not have. Maryland and Connecticut also don’t allow AOT.
As a master-level nurse who knows how to navigate the healthcare system, the options available to get my son, Jack, the help he needs when experiencing a manic episode are non-existent. I am left watching his condition deteriorate as he becomes increasingly psychotic, that is, until he actually becomes a danger to himself or others. The irony is that it then becomes a law enforcement issue.
The night the police were called to his apartment building, Jack was roaming the halls with a pocket knife in hand, paranoid and fearful that someone was after him. He was a danger to himself and others. This situation could have ended very tragically, and so I vowed to never again let his psychosis escalate to that level.
Being in close contact with the Crisis Intervention Team of the local police department, the perspective they shared was that Jack would need to be arrested, preferably before he was a danger, so that the court might commit him involuntarily to a psychiatric hospital.
In the summer of 2021, when Jack became manic again, I knew that the paranoia and delusions were beginning to set in. He could become a danger again. I was convinced that I needed to get him arrested to get him help. I found my opportunity.
Jack had scratched a swear word on the trunk of our car. I called the police and told them that I wanted him arrested for destruction of property, even though I wasn’t positive he did it. I believe the police only arrested him because they knew he needed help.
I thought that having Jack arrested and involved in the criminal justice system would be the best way to ensure that treatment would be provided. And he did get help. I was grateful for the 30+ days that he spent in an inpatient state facility after he was evaluated by the court clinician. Earlier intervention of his psychosis was extremely beneficial in that he recovered and returned to baseline much quicker than he ever had.
But that’s not the end of the story. The reality of what I had done set in soon after Jack’s release from the hospital. It was very clear the moment we stepped into the courthouse that he was being criminalized for having a SBD. Despite his time spent in the psychiatric hospital, the District Attorney charged him with felony vandalism because the damage was over $250. There was no compassion or understanding around the needs of someone living with a SBD. Instead, he was treated no differently than a criminal would be, with punitive probation, random, often daily drug and alcohol testing, and the authoritarian nature of the judge (because of the lack of knowledge of his SBD). None of this helped. In fact, it only added to his instability despite taking his medication. My job as a mother is to protect my son. But in order to do so, I was put in the horrible position of having to engage him in nine months of punitive treatment. I still feel extremely guilty for putting him in a system that was unable to recognize that having a SBD is not a crime, and shouldn’t be treated as such.
This experience is one of countless examples of how broken our mental health care system is, and how marginalized those with SBDs are throughout the United States. The harsh reality is that those living with SBDs are too sick to fight for their rights.
As Jack’s mother, I am compelled to keep fighting to protect my son. Our loved ones deserve better. They deserve the compassionate and effective treatment approach of AOT in every state across the United States!
I have learned that to affect real change, I can’t do it alone. I joined the National Shattering Silence Coalition so that collectively we can make our voices more powerful. Support and join us #ShatteringSilence and #InspiringChange for the 22 million people who live with these devastating illnesses. They too deserve a life of compassion, purpose, and hope.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy
By Marcie Sohara
Many families are struggling to find care for their loved ones with serious brain disorders, or have experienced tragic consequences from the failed mental health system. I too have experienced challenges and heartbreak due to my son Joe’s serious brain disorder, that is, schizophrenia. At times, I honestly didn’t know if there was any hope. I know better now.
When Joe was nineteen and a freshman in college, he told me something was wrong with him, that he wasn’t thinking right. I was scared and took him to the hospital emergency room. They diagnosed anxiety and depression and prescribed antidepressant medication. But his behavior became increasingly troubling. His father and I tried to help him, but he was becoming more withdrawn and confused.
Just days after the start of the fourth semester in mid-January 2009, he showed up at our house at 6 a.m. and told me he was quitting school because of things that were happening to him there. The next two weeks, trying to figure out what was happening to my sweet son, were awful.
Joe already had an appointment scheduled for later that month with the psychiatrist, who prescribed the antidepressant. In the meantime, he was becoming more unpredictable, and his behavior was extremely odd. I happened to be in psychotherapy myself, and my therapist told me it sounded like he was psychotic. At that moment, I didn’t fully understand what that meant.
On January 27th of that year, at our son’s request, Joe’s father and I attended his psychiatrist appointment. When we finished describing Joe's behavior, the doctor asked Joe to step outside. I will never forget what the doctor said next.
“I’m sorry to tell you that your son has schizophrenia, and you should give up on any hope or expectations you have for his future.” I was devastated. Joe’s father was extremely angry that the doctor would say such a thing. Then he dismissed us with a prescription for an antipsychotic medication and an appointment in three weeks. The doctor essentially told us our son would not have a future.
2009 was an extremely rough year for us. Joe attempted suicide twice and was committed to the psychiatric hospital a total of four times. Each hospitalization lasted for sixty to ninety days. I’m grateful for his father’s excellent insurance coverage and for the doctors who worked with me to get him well.
After the three hospitalizations due to forced commitments and two suicide attempts, thankfully he was eligible for court-ordered Assisted Outpatient Treatment (AOT) program. The fourth hospitalization was preceded by him tearing up my house. After that, his team got him into an intensive nine-month supervised group home, where he learned about his illness and the importance of taking his medications. That got us through most of 2010.
When he was discharged from the program, he wanted to come home. I agreed under the conditions that he continue taking his medications and either go back to school or get a job.
Working part time and taking part-time classes, he earned an associate’s degree in business in 2013. He then attended Penn State at a campus close to home and graduated with a bachelor’s degree in May 2016. In addition, he was inducted into the National Honor Society for business and marketing. He made the dean’s list for several semesters and graduated with honors.
It turns out, the doctor who told us to give up all hope was wrong.
Joe was given many opportunities for wellness. He had a great AOT team and a very supportive family. Some really great staff worked with us when Joe was in the inpatient unit, and his insurance allowed him the time he needed to get well.
In the years since his diagnosis we have had some setbacks, but only two short additional hospitalizations. Keeping him stable isn’t easy, and certainly COVID didn’t help, but overall he continues to move forward. I am still concerned about what the future holds for him, but preventing another hospitalization is my primary focus.
Undoubtedly, all doctors would want this kind of outcome for their patients, but many either do not believe it’s possible or just don’t care enough to provide meaningful help. Similarly, many in the public would support these kinds of outcomes, but don’t understand the issue because they are not directly affected by serious brain disorders. We must do our best to educate them, and if we cannot bring them along, learn how to work around them to get the necessary help for people like Joe.
My deepest, or heartfelt, wish is that every individual suffering from schizophrenia and other serious brain disorders gets the same help as Joe. They too could have the opportunity to be productive members of society.
If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy #ShatteringSilence
Help End A Discriminatory Law Denying Treatment and Fueling the Homeless and Addiction Crises
The U.S. is facing one of the worst public health crises in history–and we’re not referring to COVID-19. News reports say the country is in the midst of a mental health crisis. While many are just now learning about the lack of access to psychiatric services, the truth is, this crisis has been going on for decades, and it’s far worse than most people realize.
Lack of Access to Psychiatric Services Affects Everybody
This inability to access psychiatric services has consequences for everybody, not just people suffering from illnesses. City streets, neighborhood parks and freeway offramps across our country are filled with the homeless - many of whom have serious brain disorders, commonly referred to as serious mental illnesses. Hospital emergency departments are overcrowded with people in crisis who have nowhere to go. There simply are not enough psychiatric beds. As a result, people with serious brain disorders, including children, sometimes wait in emergency rooms for days and even weeks at a time.
Recently in New York, two people were shoved onto subway tracks in separate instances by individuals with a history of psychiatric symptoms. Preventable tragedies occur regularly because people with serious brain disorders do not receive the necessary medical care they need.
From the Treatment Advocacy Center:
Prevalence and Treatment Rates*
8.3 million adults with schizophrenia or bipolar disorder mental illness (3.3% of the population)+
5.5 million – approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
2.8 million – approximate number with schizophrenia (1.1% of the population), 40% untreated+
3.9 million – approximate number untreated in any given year (1.6% of the population)+
Consequences of Non-treatment*
169,000 homeless people with serious mental illness**
383,000 inmates with mental illness in jails and prisons
50% – estimated percentage of individuals with schizophrenia or bipolar who attempt suicide during their lifetimes
44,193 suicide deaths in 2015
10% – estimated percentage of homicides involving an offender with serious mental illness (approximately 1,425 per year at 2014 homicide rates)
29% – estimated percentage of family homicides associated with serious mental illness
50% – estimated percentage of mass killings associated with serious mental illness
A bill sponsored by California Congresswoman Grace Napolitano introduces sensible and long overdue solutions. The "Increasing Behavioral Health Treatment Act" (H.R. 2611) would repeal a discriminatory law known as the IMD Exclusion that prevents access to medically necessary treatment for people with serious brain disorders.
The bill would also require state Medicaid programs to improve patient access to outpatient and community-based behavioral health care, expand crisis stabilization services, and facilitate care coordination between providers and first responders.
What Is the IMD Exclusion and Why Must It Be Repealed?
The IMD Exclusion prohibits federal payment under Medicaid for medically necessary treatment for adults in Institutes of Mental Diseases–which are psychiatric hospitals and residential treatment facilities with more than 16 beds. It bars Medicaid enrollees with “mental diseases” from receiving the same level of care that enrollees without severe mental illness receive for other illnesses such as cancer and heart disease.
In doing so, the exclusion denies equal protection under the law to the very group of people it is supposed to help. The IMD Exclusion is blatant discrimination against people with serious brain disorders like schizophrenia and bipolar disorder.
As a result of this law, many psychiatric hospitals and residential treatment centers have closed, while others limit their beds to 16. The need for treatment beds far exceeds this artificial cap.
Some states have sought Medicaid demonstration waivers that allow them to bypass the IMD Exclusion. However, this is a piecemeal approach to a national problem, and to date only eight states have an approved waiver.
We must end the suffering by bringing about parity and a right to treatment under Medicaid/Medicare. It is inhumane and unjust to deny medical treatment to those in need and leave them abandoned, criminalized or left to die in our streets.
Not only is it unjust, billions of tax dollars are wasted, which the National Shattering Silence Coalition refers to as the #CostOfNotCaring.
Who Supports the Repeal?
In addition to the National Shattering Silence Coalition, the following nationally recognized organizations support the full repeal of the IMD Exclusion:
National Association of State Mental Health Program Directors
Mental Illness Policy Org
Treatment Advocacy Center
Schizophrenia & Psychosis Action Alliance
National Association of Medicaid Directors
National Association for Children's Behavioral Health
To date, the "Increasing Behavioral Health Treatment Act" is supported by the following legislators:
Rep. Grace Napolitano (D) - California (sponsor)
Rep. Alan Lowenthal (D) - California
Rep. Karen Bass (D) - California
Rep. Salud Carbajal (D) - California
Rep. Ted Lieu (D) - California
Rep. Maxine Waters (D) - California
Rep. Lucille Roybal-Allard (D) - California
Rep. Nanette Diaz Barragan (D) - California
Rep. Tony Cárdenas (D) - California
Rep. Susan Wild (D) - Pennsylvania
Rep. Linda T. Sánchez (D) - California
Rep. Mike Levin (D) - California
Rep. Earl Blumenauer (D) - Oregon
Overcoming Misguided Objections
Some fear that, by repealing the IMD Exclusion, we are going to regress to the days when everyone with a serious brain disorder (and even some without) were locked away forever in horrible institutions where they were tortured and experimented on. No one wants to go back to those days. Our goal is to provide a hospital bed when needed, a continuum of care in the community, and #HousingThatHeals so people with serious brain disorders will have every opportunity to live their best lives.
In addition to increasing the number of hospital beds, repealing the IMD Exclusion would allow for increased reimbursement for inpatient care and all facilities at various levels of care, including access centers and longer term #HousingThatHeals.
Having higher levels of reimbursement will enhance services in all of these levels of care, including more work with psychologists, and multidisciplinary teams so that the models can move away from just a pill and a bed to more comprehensive care. We absolutely do still need many other things, including comprehensive community based care. Repealing the IMD Exclusion would help with both acute care treatment as well as with those who need longer term treatment all along the continuum of care.
We need many more representatives to support this bill. We also need someone from the Senate to introduce a bill mirroring H.R. 2611 in the Senate.
You can help by taking the following actions today:
Visit our National Shattering Silence Coalition Campaign to End the Discriminatory IMD Exclusion page and click on the two “calls to action” on the right side of the page.
1) Email your representative using the online form and ask them to co-sponsor H.R. 2611
2) Email your senator using the online form and ask them to introduce legislation that mirrors H.R. 2611 in the Senate.
3) Call your legislators to schedule a meeting to discuss the bill and ask for their support.
Background and talking points are provided on the webpage. For more information on why the IMD Exclusion must be repealed, please see NSSC’s IMD Exclusion Position Statement.
Tips for Effective Meetings With Legislators
Please take action today! Help us to gain access to #abedinstead of a jail cell, homelessness, or death.
If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy #ShatteringSilence
* Numbers and percentages of US adults
+National Institute of Mental Health, 2016
**2015 Annual Homeless Assessment Report
Being an advocate is a role I never thought I could do. When I was a young adult, my brother’s schizophrenia and its effects on our family were too traumatizing for me. It is not easy watching an illness rob a loved one of their future. Seeing the illness up close brought guilt, sadness, and regret, not to mention fear and anger. Much of the time, I avoided thinking about him or his illness. It was easier to pretend his schizophrenia didn’t exist.
But now that I am more mature and have a family of my own, I can no longer stay silent. I know I must speak out and do what I can to change the way serious brain disorders are treated in this country so that future generations no longer have to suffer.
Growing up, I envied my brother Eric in just about every aspect—he was more confident, wittier, and seemed to make friends without effort. He was smart and kind-hearted. A stand-out athlete, Eric loved sports, especially basketball. He was two years older than me, and even though he teased me sometimes, he watched out for his little sister.
During childhood, he showed no obvious signs that things were amiss. As a teen, he did drink and smoke marijuana, but that wasn’t so unusual. Ours was a two-parent family with a house in the suburbs—no trauma, abuse, or unusual circumstances. No one would have imagined that schizophrenia lay dormant in his brain, ready to strike in young adulthood.
As he went off to college, Eric seemed to have a bright future ahead. He enjoyed his classes, particularly philosophy and English, and got decent grades. The summer after his freshman year, he was ambitious enough to start a summer business with a friend, renting out beach boogie boards. But not long after, he began veering off his path. He dropped out of college, moved back to our parents’ home and drifted aimlessly for months.
He worked his way through several menial jobs—pizza delivery, cook, landscaping—quitting each one within weeks, sometimes days. Then he stopped working altogether, broke up with his girlfriend and no longer spent time with friends.
He rarely showered and wore odd, mismatched thrift store clothing. Sometimes he would disappear from home and turn up several days later. He spent most of his time holed up in his room or roaming the woods near our house. He was nocturnal, staying up all night, then crashing in the morning.
There were other odd behaviors. Once when I was playing the piano, he sidled up to me and began banging away on the keys like a child. He seemed mesmerized by the sound, even though he had never played before. I overheard him making plans to form a rock band and become a musician, though he had never been musical. He lived in his own reality.
One afternoon, I heard him laughing in his room. I looked in and noticed a wild glint in his eye as he sat alone on his bed. “What’s so funny?” I asked. He said he was remembering a joke, but his explanation didn’t ring true. I began to feel afraid, but of what, I couldn’t say. I started locking my bedroom door at night.
Delusions of grandeur, trouble sleeping, inappropriate laughter, social withdrawal—the signs of a serious brain illness were there. But although my parents were desperately worried, the possibility of schizophrenia never dawned on them, or me.
And why would it? “Crazy” was Jack Nicholson in “The Shining,” or the homeless person muttering to himself on the street. Looking back, I shake my head at how naïve we were.
Nonetheless, my parents were concerned enough to take him to a psychiatrist. The doctor misdiagnosed him with depression. Eric refused any medication, insisting there was nothing wrong. “You’re the ones who are depressed,” he would say to us. My parents couldn’t convince him to go back. Untreated, his disease progressed.
Eric didn’t tell anyone he was hearing voices. He didn’t say a word about his bizarre thoughts, which we would learn about only later. He believed the girlfriend he had recently broken up with had died of cancer (she was alive and well). He fixated on my dad, who he thought was somehow trying to harm us.
At times, he thought he was an NBA star—other times, a famous musician. He heard newscasters commenting on him, broadcasting his actions to the world. Birds called him the “Son of God.”’ He was a shaman and a doctor. At times, he didn’t know if he was dead or alive. As absurd as these delusions seemed, to him they were reality.
Like 40 to 50 percent of people with schizophrenia and bipolar disorder, Eric had anosognosia, a symptom that prevents a person from understanding they are ill. His lack of insight into his own brain illness is why, when he had the opportunity to be treated by a psychiatrist, he refused. He didn’t believe he was ill. No matter how many times my parents tried, they could not convince him to seek treatment, and because he was an adult, no one could make him.
I often wonder what life might have been like if we could have forced him into treatment. With a proper diagnosis and medication, maybe his voices could have been quieted, and he could have come to his senses before acting on his delusions.
I was at work that day in late August when my mother called me with the news. I couldn’t comprehend what I was hearing. Eric had attacked my father with a hammer, striking him multiple times in the head. My father was flown to shock trauma, where he underwent emergency surgery to remove parts of his skull from his brain. He was put into a medically induced coma, and we didn’t know whether he would survive.
Eric was arrested and taken to jail. After a psychiatric evaluation, he was diagnosed with paranoid schizophrenia, a chronic brain disorder that involves delusions and an altered perception of reality. Once he was treated with medication, the fog began to lift, and he realized the horror of what he had done. His letters and phone calls to my mother revealed a distraught and terrified young man. When we visited him in jail, he appeared confused and often cried.
My father, meanwhile, spent months in a rehabilitation center and was left with a brain injury that impaired his balance, his eyesight and cognitive function. Miraculously, he recovered the ability to walk and talk but could no longer work.
After waiting in jail for a year, Eric was found “not criminally responsible” due to his schizophrenia and was transferred to a secure state hospital, where he received treatment. After another two years, he was released to group housing and community services. He complied with his treatment and lived a semi-independent life with the support of my parents. He was never violent again. He volunteered with NAMI educating others about schizophrenia and got a job with a mental health organization helping others with serious brain disorders. But until his death eight years ago from a heart condition, he struggled daily with guilt.
In the months when Eric was in jail, I wrote him letters trying to understand why he would want to harm our father—a kind and gentle man who loved us and did everything he could for his family. I would try but fail to square his actions with the brother I had shared my childhood with. It simply made no sense.
And then I realized, that was the point. His actions didn’t make any sense, because his brain was severely impaired. The organ he relied on to make rational decisions was malfunctioning. His brain synapses were misfiring, creating a distorted reality.
In one of my brother’s letters, written after he was on antipsychotic medication, one line stood out: “You could come to the conclusion that I am a ruthless person and did a horrible act that shouldn’t be forgiven,” he wrote. “Or you could come to the conclusion that I was out of my mind due to an illness that had manifested years before and completely caused my self-destruction, as my history shows.”
There were only two choices. He was not a ruthless, evil person—he was just an unlucky young man.
Today, I advocate for all those unlucky enough to be stricken with a serious brain disorder through no fault of their own. Too many people are suffering—not only those who are ill but also their families. Alone I can’t make a difference. But by joining other advocates at NSSC, I hope, together, we can create a better future.
If you have personal experience with serious brain disorders—whether as a family member, a professional, or a person with an illness—we encourage you to share your story. Email firstname.lastname@example.org.
If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy
Renewed Hope for the New Year
As we enter the first few weeks of 2022, advocates at the National Shattering Silence Coalition have renewed hope for the coming year. With our newly formed nonprofit, we are attracting new members and gaining momentum to accomplish our goals. In the months ahead, our work will be guided by our vision to create a more compassionate and just world for people with serious brain disorders. We call this our North Star.
We imagine a better future for those who have been suffering, discriminated against and abandoned for far too long. We can bring this future closer, one step at a time, if we all come together and use our collective power to create change.
We have identified eight pillars of change below to make our vision a reality. Imagine a better future for your loved one who suffers from a serious brain disorder, for yourself if you are a person who suffers, or for your patients if you are a professional in the trenches.
IMAGINE THE POSSIBILITIES ... #JUSTICEFORSBD
What if discrimination based on serious brain disorders were no longer socially acceptable or tolerated and the world was as outraged about the injustices faced by people with serious brain disorders as they are about racism, LGBTQ+ discrimination and xenophobia?
The U.S. is outraged about discrimination against people of color, the LGBTQ+ population and other marginalized groups, and rightly so. The COVID-19 pandemic shed light on widespread racial inequities, and with the death of George Floyd, the country came together to support Black Americans.
Conversely, when scientists discovered that people with severe brain disorders were disproportionately dying from COVID-19, our country did not have a similar reckoning.
People with serious brain disorders are 16 times more likely to be killed during a police encounter, according to the Treatment Advocacy Center. They are disproportionately incarcerated, living in poverty, homeless, living with medical co-morbidities and have shorter lifespans.
They suffer horrific abuses and neglect, and yet Americans have shown no widespread outrage—there have been no marches on Washington, no protests or national conversations about these injustices. It’s time for that to change.
The National Shattering Silence Coalition is giving a voice to all those who have suffered injustices. It is time for us to shatter the silence and finally bring these inequities to light, so that our loved ones will suffer no more.
IMAGINE THE POSSIBILITIES ... #RIGHTTOTREATMENT #SHATTERINGSILENCE
What if people understood the true nature of serious brain disorders?
The National Shattering Silence Coalition provides information to the public to correct the misperceptions about brain illness. We speak out so people can fully understand that illnesses currently labeled as serious mental illnesses in adults and serious emotional disturbances in children, such as schizophrenia, schizoaffective disorder, bipolar disorder, and major depressive disorder, are biologically based, no-fault brain disorders.
They are not a failure to control one’s behavior, a character weakness or the result of a traumatic childhood.
What if we created a world where it was universally recognized that disorders originating in the brain were not “behavioral” but medical disorders?
Imagine if everyone understood that when the organ that allows a person to think, behave and reason is impaired, the ability to make informed, rational decisions is also impaired.
We advocate for laws and policies reflecting the truth that as many as half of those with schizophrenia and 40 percent of those with bipolar disorder lack insight into their illnesses, known as anosognosia. They should not be expected to ask for help.
Providing the right to medically necessary treatment is the only humane response. It would eliminate needless suffering, prevent incarceration, homelessness and death, and offer the best chance of recovery.
IMAGINE THE POSSIBILITIES ... #HIPAAHANDCUFFS
What if family members who know their loved ones best were welcomed as part of a person’s treatment team, just as we do for family members of those with dementia, brain injuries and other brain disorders?
Family members have vital insight and information about their loved ones’ health history and must not be shut out of communication with medical professionals due to overly restrictive or misinterpreted HIPAA privacy laws.
Participation of family members, especially when a person lacks insight due to their brain illness, is critically important to ensure the best care.
Just as doctors share health information with family members of those with dementia, brain injuries, and stroke, we envision a world where doctors actively seek out input from family members of those with serious brain disorders and communicate openly with them. Doctors and families who desperately want to help their loved ones would collaborate to ensure the best possible outcome for the person with brain illness.
IMAGINE THE POSSIBILITIES ... #LIFELONGCARE4SBD
What if people with serious brain disorders received a full continuum of care at every stage of their illness?
Serious brain disorders are chronic, life-long illnesses that require differing levels of treatment depending on the severity and stage of illness. These individuals need a full range of services—including long-term inpatient care, step-down units, intensive outpatient services, community programs, supportive and independent housing options and supportive services—instead of a revolving door of short-term inpatient stays with inadequate treatment and no follow up services in between.
We must provide enough treatment beds and centers to serve all who need them, just as we do for every other type of illness.
People with serious brain disorders need and deserve comprehensive wrap-around services in the community, including counseling, social supports, education, job training and opportunities, connection to resources, and assistance with legal issues (e.g., applying for SSI/SSDI, creating mental health advance directives, filing tax forms).
Their family members/caregivers also need and deserve education, social and financial support, and assistance with legal issues such as applying for guardianship and setting up trust funds on behalf of their loved ones.
IMAGINE THE POSSIBILITIES … #PARITYFORSBD
What if the determination of whether to receive medical care were based on a doctor’s expertise rather than a judge or the law, or lack of bed availability?
If we treated serious brain disorders like we do every other medical illness, doctors would decide the appropriate medical intervention instead of laws that are designed to thwart the right to treatment.
Instead of waiting until a person has deteriorated to the point of danger, we would ensure medically necessary treatment. The inhumanity of withholding treatment can no longer be justified in the name of civil liberties.
With the success of many Assisted Outpatient Treatment (AOT) programs and what we now know about early intervention, those with serious brain disorders would be freed as victims of their illness, no longer prisoners of their own minds. Psychosis, including delusions and hallucinations, would no longer be a right to protect–instead we would focus on the right to treatment that would restore one's sanity, dignity, free will, and the ability to exercise their liberties.
We envision a country where a person with a chronic serious brain disorder would not be denied treatment because of an arbitrary limit on the number of treatment days or lifetime caps. They would be cared for as compassionately and humanely as a person with Alzheimer’s or Parkinson’s.
IMAGINE THE POSSIBILITIES ... #FUNDINGEQUITY
What if we spent as much on serious brain disorder research as we do on mental health or on other serious illnesses?
Our society’s lack of caring has seeped into our government’s research priorities. We spend far less on research into serious brain disorders than we do for mental wellness, mindfulness, and stress reduction, or for other serious illnesses such as Alzheimer’s.
For example, the National Institutes of Health, our leading government agency for public health, spent $519 million on serious mental illness research with a 14.2 million prevalence in the adult population compared to $3.5 billion on mental health research or $2.9 billion on Alzheimer’s with a 6 million prevalence.
If you do the math, there is a glaring mismatch: $36.55 spent on adults with serious brain disorders compared to $478 on those with Alzheimer’s, which is 13 times or 1,327% more per person.
If the U.S. invested more in research, people with serious brain disorders would have better treatment options than medications that come with terrible side effects such as obesity, permanent movement disorders and lethargy, to name just a few. Research may finally reveal the causes of these disorders, paving the way for new treatments and therapies that would reduce suffering and lead to a better quality of life. We would learn why people with schizophrenia and bipolar disorder die 25 years earlier than the average life span and, in time, eliminate this disparity.
IMAGINE THE POSSIBILITIES ... #ABEDINSTEAD
What if we no longer criminalized serious brain disorders and instead offered compassionate treatment?
There are approximately 383,000 inmates with serious brain disorders in jails and prisons. Individuals with schizophrenia and bipolar disorder are 10 times more likely to be in a jail or prison than a hospital bed. These individuals need treatment, not handcuffs.
Serious brain disorder should be treated as a public health issue, not a criminal issue that is addressed with punitive and restrictive environments that lack the appropriate resources, supportive housing and adequate treatment support.
In a just world, we would provide treatment to those with serious brain disorders rather than sending them to jail to decompensate further. Compassionate care delivered through Assisted Outpatient Treatment programs when needed and appropriate would help end criminalization of serious brain disorders by connecting those in crisis to treatment and a continuum of care.
These services are vital to helping individuals maintain stability and safety. Timely intervention would help avoid a criminal record, which becomes a significant barrier to many essential aspects of healthy living, including employment, income and housing.
A collaborative program that involved interdisciplinary health care teams providing intensive treatment services designed to promote stability and achieve recovery in the community would replace incarceration and hospitalizations. Instead of the criminal justice system deciding the fate of those with serious brain disorders, a collaborative medical team would determine the appropriate medical care needed.
Having a brain illness is not a crime – we must continue to work on decriminalization by offering comprehensive treatment as an alternative to jail.
IMAGINE THE POSSIBILITIES... #TREATMENTBEFORETRAGEDY
What if we provided treatment at the earliest symptom of disease instead of waiting until after a tragedy to intervene?
Research has shown that allowing brain illnesses to go untreated–to grow progressively worse–causes irreparable damage to the brain and reduces the likelihood of recovery. Withholding treatment for a neurodegenerative disease is cruel and causes immense suffering to both the individual and their family. In addition, allowing an individual to deteriorate can lead to tragic consequences.
While perpetrating violence is relatively uncommon among those with serious mental illness, it is more prevalent when untreated psychosis involves paranoia or command hallucinations. According to the Treatment Advocacy Center, roughly 3% of the population with serious brain disorders are estimated to account for approximately 50% of mass killings, 20% of law enforcement fatalities, 10% of all homicides and 29% of family homicides.
The tragic and costly consequences of untreated serious brain disorders are preventable. The best outcomes occur with early identification and intervention focusing on a full continuum of care with comprehensive services.
It is possible for those with serious brain disorders to overcome challenges and lead meaningful, productive lives.
We cannot make this world a reality without the help of advocates who are willing to shatter the silence and make change. Please join us.
Shining the Most Brilliant Light
“We need more people to go public with this humanitarian crisis of not treating people with serious brain illnesses and not paying for them to be housed in the best level of care where they can be the healthiest and most stable. We need to care. We need to act, no matter how terrifying it might be to bring this information forward.”
These inspiring words of tireless activist Leslie Carpenter from a recent Facebook post remind us all how important this battle is for those who are suffering and the family members who care for them.
Help is on the way. National Shattering Silence Coalition is gearing up at this very moment to shine the most brilliant light on this humanitarian crisis you have ever seen. With the help of Accelerating Social Good and mental health activist/consultant Kerry Martin, NSSC is poised to harness the power of our collective voices. It’s time to finally Shatter the Silence and bring hope, compassion, and treatment to those who have been abandoned for so long. Stay tuned…
Leslie’s original post:
Sometimes in the life of being a very public serious brain illness advocate, I have people reach out to me for suggestions for loved ones, resources, etc. I try to respond to all of them and at least make an effort to reach them, give them all of my contact information, and let them get back into contact with me. Not all do, but when they do, I try to listen with a caring heart and share information that might be helpful.
Recently, I was asked to meet with someone who has worked within the system who wanted to share information with me of several cases and system failures they felt I needed to know since I work at the local, state and federal level to improve mental health care.
I just left that 2.5 hour meeting feeling filled up with the poison of knowledge of so many cases with adverse outcomes, due to not just gaps in the system, but active choices of key people in the system.
I have known there were problems, gaps, and challenges. I now know some of the people who specifically have caused harm, and my soul is feeling overwhelmed with sadness and disappointment.
I need to move forward with solving some of this mess, and I will. But for now, I am sitting in a random parking lot crying and processing and figuring out the best next steps.
For now, let me say this:
We need more people to go public with this humanitarian crisis of not treating people with serious brain illnesses and not paying for them to be housed in the best level of care where they can be the healthiest and most stable.
We need to care. We need to act, no matter how terrifying it might be to bring this information forward. #WeCanDoSoMuchBetterThanThis
#CostOfNotCaring #ShatteringSilence4SBD #Not1MoreTragedy
Please join NSSC today.