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.
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 Dede Ranahan with 64 Co-Authors
In the selected snapshots from on-going sagas (2016 to the present), you’ll read about grim realities — terrible group homes, suicides, adult children killed by police, incarcerations and solitary confinement, lack of beds, family chaos, substance abuse, ineffective medications, “dying with their rights on,” heart-breaking HIPAA restrictions, hallucinations, homelessness, sorrow, sadness, hurt, and anger. Simultaneously, you’ll read about profound love, caregiving, gratitude, forgiveness, hope, strength, persistence, resilience, generosity, leadership, courage, advocacy, pursuing dreams, understanding, and fighting for change.
Here’s the pitch. The ask. We want you, first and foremost, to read our stories. Set aside any conscious biases about serious mental illness and the people and families who struggle with them. Imagine us as relatives or friends — people you care deeply about. Pick up Tomorrow Was Yesterday and settle in for the next few hours. Kick off your shoes and slide into the worn-out shoes we mothers wear. Try them on for size. See how they feel. Are they comfortable? Do they cause pain?
If you read every story, and if you’ve not had personal or family experience with SMI, I guarantee you’ll be a different person than you are right now. You’ll entertain new thoughts and ideas about our mental health system. You’ll wish us well in our efforts. You’ll identify something you can do, in your own life, to help us prevail and obtain the mental health/illness care we desperately need.
And if you’re another SMI mom reading Tomorrow Was Yesterday, trust me. Wherever you are, I’m confident you’re going to feel less alone.
Please. Begin. I’ll rejoin you, after the last story, and we’ll talk some more.
From the Conclusion — The Close:
…Nobody is being held responsible to improve our mental health system even though it’s everybody’s job. Sure, multiple pockets of forward action exist. But a coordinated government effort with national implementation plans? With the buck stops here authority? Haven’t heard of one.
So what can I do? What can you do? In the next few pages, I’ve included a Grassroots Five-Part Plan to Address Serious Mental Illness and a sample cover letter. In 2019, this plan was collaboratively developed by SMI advocates from across the country. It’s a starting point. We’re asking Everybody, Somebody, and Anybody (sorry Nobody) to share this plan with their political representatives, doctors, therapists, psychiatrists, pastors, families, neighbors, and friends. That’s one thing each of us can do.
I’ve also added a list — right after this section — of twenty-five actions each of us could take. If each of us takes one or two of the suggested actions, we’ll intensify the call for better mental health/illness care and a Department of Actually Doing Something.
As it stands today, the US mental health/illness system is filled with political landmines and gut-wrenching divisions: parents vs. children, peer organizations vs. family organizations, voluntary vs. involuntary treatment concepts, psychiatrist vs. psychologist turf wars, state vs. federal jurisdictions, HIPAA restrictions vs. parental rights, lack of beds vs. incarceration, unions vs. providers, psychiatry vs. anti-psychiatry, civil rights vs. dying with your rights on, NIMBYism vs. housing, traditional medicine vs. holistic medicine, and funded advocacy organizations vs. unfunded grassroots advocacy efforts. I watched my son Pat die because the system is tied up in bureaucratic and philosophical knots.
You're reading Tomorrow Was Yesterday, and considering what you can do to help our SMI families, is appreciated by SMI mothers/caregivers writing in this book and by SMI mothers/caregivers everywhere. “Thank you” is an understatement. We value your alliance more than you will ever know.
On November 23, 2020, Tomorrow Was Yesterday arrived live on Amazon and in IngramSpark outlets. One marker of a “successful” self-published book is 250 book sales in a year. In two months, Tomorrow Was Yesterday has far surpassed this goal. And reader reviews and responses are enthusiastic:
“I couldn’t put the book down. I didn’t know about any of this.”
"I just read Tomorrow was Yesterday and I'm so glad I did. I just lost my cousin to SMI last month and this book helped me better understand the realities of it all and to have more compassion for people in that situation. I'm also motivated to act. Can you please send me a copy of the plan, a cover letter, extended list of SMI needs, and any other relevant resources? I'd like to email local, state, and national politicians.”
“I highly recommend this book!”
“I will send many copies of this book to legislators and recommend that others do the same in your own state or county.”
“I was eager to get my hands on this book and read it. It's truly mesmerizing. Extremely powerful stories from mothers that shed light on the broken mental health system. I don't think I'm lying when I say everyone should read this book and share it.”
“This book is a must read! Everyone should read it especially those who work in health care, law enforcement, social work or are involved in policy making. In their own words family members around the country tell their stories of having a loved one who suffers from a severe mental illness. Against almost impossible odds they try to find help for their loved one in a system that refuses to acknowledge and meet their needs... and often even punishes them for being ill. It tells of unspeakable suffering and wasted potential and all too often these stories end in tragedy. Schizophrenia has been described as ‘the very worst illness anyone could have,’…yet it and other serious mental illnesses are swept under the rug, dismissed as behavior problems and treated in a haphazard way if they are treated at all. These stories show the results of this broken system. They also highlight the best in humanity...love that refuses to give up, that refuses to stop trying even when there are no help, no answers, and no end in sight.”
In other words, our book is resonating. Copies are being shared with local, state, and national politicians. I personally have mailed more than 30 copies to mental health/illness organizations, politicians, and media representatives, and I have more to send. At 76 years of age, I’m not shy. I figure I/we have nothing to lose. Also, preliminary discussions have taken place with several filmmakers for possible documentary treatments. We’ll see what comes from these early conversations. As with the book, control of the message is of paramount importance.
In closing, I want to acknowledge the mothers/caregivers from 28 states — many are NSSC members — who share their stories in Tomorrow Was Yesterday. Their stories are honest, direct, unpretentious and brave. In alphabetical order:
Theresa A., Holly Alston, Margie Annis, Anonymous, April, Audrey Adams Auernheimer, Harriet B., Kathy Baker, Gwendolyn Barley, Tama Bell, Joyce Berryman, Ronni Blumenthal, Judy Waldo Bracken, Mara Briere, Allison Brown, Kendra Burgos, GG Burns, Mary A. Butler, Sarah C., Leslie Carpenter, Sylvia Charters, Laurie Lethbridge Christmas, Jerri Clark, Dawn MacTaggart Connolly, Elizabeth Courtois, Sonia Fletcher Dinger, Ashley Doonan & Cathie Curtis, Donna Erickson, Deborah Fabos, Heidi Frank, Julia Gillies, Jeanne Gore, Val Greenoak, Deborah Harper, Amy Kerr, Nikki Landis, Martha, Carole McAfee, Angela McCandless, Sherri McGimsey, Jacque Cowger McKinney, Rhonda Meth, Kelli Nidey, Teresa Pasquini, Laura Pogliano, Linda Rippe Privatte/CJ Hanson, Dede Ranahan, Rebecca Reinig, Karen Riches, Ellie Shukert, Kat Shultz, Kecia Bolken Speck, Joann Strunk, Laurie Turley/Carol A. Snyder, Sandy Turner, Sharon Underwood, Cheri VanSant, Francie VanZandt, Darlene Been Watkins, Christi Weeks, Kimberlee Cooper West, Channin Henry Williams, Maggie Willis, and Pat Wood.
From the back cover:
We mothers, in Tomorrow Was Yesterday, are counting on you to help us use outrage and compassion to reach a tipping point for change. We’re relying on your word of mouth support to get these stories out to the broader, unknowing public. It has no idea how abysmal things are. — Dede Ranahan
“I am confident these stories will cause the world to wake up, take notice, and implement the change we so badly need.” — Miriam Feldman, author of He Came In With It: A Portrait of Motherhood and Madness.
“Reading these intimate accounts will change you. It changed me.” — Steve Goldbloom, writer, producer, director, and creator of the Brief But Spectacular series for PBS NewHour.
“If these stories can’t convince policy makers, I don’t now what will.” — Mindy Greiling, author of Fix What You Can: Schizophrenia and a Lawmaker’s Fight for Her Son.
The tragic death of George Floyd and the resulting protests against police brutality have produced calls by the Black Lives Matter movement and others to “defund the police.”
While the slogan has different interpretations, the movement brings welcome attention to what the National Shattering Silence Coalition (NSSC) and other advocates have long called for—the need to invest in psychiatric care and social services specifically targeting those experiencing serious brain disorders, not the “worried well,” and to shift responsibilities such as brain illness-related crises and homelessness away from law enforcement and into the hands of medical and social service professionals. The responsibility for the failure of our health system should not fall on the police.
In many respects, the goals of the Black Lives Matter movement and those of brain illness advocates are aligned. The lives of those with serious brain illnesses commonly known as “serious mental illnesses” matter too (#SBILM), and these individuals, black and white, are also disproportionately killed and jailed. They, too, are discriminated against, marginalized, and profiled.
Despite the many efforts over the years to provide crisis training to law enforcement, the sad reality is, the risk of being killed by a police encounter is 16 times greater for individuals with untreated brain illness than for other civilians. As many as one in four people killed by police have a severe brain illness. These tragedies are a direct result of our failure to invest in treatment, housing, and other services for people with serious brain disorders such as schizophrenia and bipolar disorder. With the closures of psychiatric hospitals over the past almost six decades and a lack of community health services to take their place, there are now ten times more people with severe brain illnesses in jails and prisons than in state hospitals. There is simply nowhere for law enforcement to take people in crisis.
We at the NSSC have experienced firsthand the toll our broken health system has taken on our families and patients. Our children and siblings have been discriminated against, arrested, denied treatment, left homeless, and jailed for the crime of being ill. And we are left stunned by our country’s indifference.
It is somehow acceptable in our country to treat those with some brain disorders differently than others. A person with Alzheimer’s would never be left to wander the streets, yet we leave people with a different type of brain illness homeless. If people with Alzheimer’s need treatment but don’t recognize they’re ill, we don’t ignore their needs in the name of protecting their civil rights. But we deny treatment to those suffering from brain illnesses like schizophrenia—unless or until they become a danger to themselves or others. It’s time to insist on a health care system that places the same priority on early intervention for this type of brain illness as it does for other brain illnesses, knowing that is how to achieve the best outcomes.
Brain illnesses like schizophrenia and bipolar disorder are the only health emergencies in which a police officer responds instead of a medical professional. When armed police respond to people experiencing a brain illness crisis, too often the encounter ends in tragedy. It’s the only illness where people are denied treatment because there is nowhere to treat them and/or because they cannot recognize they are ill.
The FCC is set to vote at it’s July 16th open meeting to make 9-8-8 the number people can dial when having a mental health emergency. All telecommunication carriers and Voice over IP service providers will be required to implement the new number nationwide by July 16, 2022. Currently, they have to call 1-800-273-8255 (TALK). This is a huge step in the right direction. No longer will people have to call the police when experiencing a psychiatric emergency. This will provide people with the services of a trained clinician who can help them access services and take the pressure off of the police to deal with situations they were not adequately trained to handle.
In concert with a national mental health hotline, if we invest in a continuum of treatment and services for these individuals instead of settling for the broken patchwork of Band-aids that is our health system, the investment would pay for itself and alleviate, if not, do away with the need for law enforcement’s involvement with those experiencing brain disorders. We would also save on criminal justice expenditures and need fewer jails. If we invest in hospital beds, reform nonsensical civil commitment laws, and take advantage of life-saving AOT for those patients suffering from anosognosia, we could ensure that more people with brain illness get treatment before a crisis, not after. And it would free up police resources to focus on true law enforcement matters. This is not to say that law enforcement will no longer need to be able to identify and assist people experiencing a psychiatric crisis. There will still be a need for them to be able to recognize when someone is experiencing psychosis versus being under the influence of illicit substances or alcohol, or just being combative. NSSC believes that going forward, CIT training should be a required course for everyone attending law enforcement school and not as just an afterthought for those who are already officers.
In order to access prompt medical attention during a psychiatric crisis, it’s time for the rest of the country to follow RI International’s lead. They have created extremely successful crisis care systems operating in California, Arizona, Delaware, North Carolina, Texas, and Washington using the “Crisis Now” concept that brings help to people immediately and doesn’t require a call to the police.
Using the “Crisis Now” concept, SAMHSA has created the National Guidelines for Behavioral Health Crisis Care – A Best Practice Toolkit that provides mental health authorities, agency administrators, service providers, and state and local leaders with a roadmap for how to design, develop and implement crisis care systems and provide continuous quality improvement efforts.
The core elements of these crisis systems are a regional crisis call center, a mobile crisis team response, and crisis receiving and stabilization facilities (see video here). The crisis call center is staffed 24/7 with clinicians overseeing triage and other trained team members to respond to all calls received. The mobile crisis team response offers community-based intervention to individuals in need wherever they are, including at home, work, or anywhere else in the community where the person is experiencing a crisis. They recommend two-person teams including a clinician able to assess the person’s needs, a peer support person, and an ambulance crew if warranted. They respond to calls without law enforcement “unless special circumstances warrant inclusion in order to support true justice system diversion.”
In the “Crisis Now” model, “crisis receiving and stabilization services offer the community a no-wrong-door access to mental health and substance use care, operating much like a hospital emergency department that accepts all walk-ins, ambulance, fire and police drop-offs.” They are also required to accept patients picked up by the police requiring involuntary care or those brought to an ED.
RI’s flagship facility in Phoenix, Arizona, has accepted more than 20,000 successive law enforcement drop-offs without rejecting a single one. Those who need longer stays or more intensive treatment are provided a warm handoff to a psychiatric hospital, assisted living facility, or wherever is deemed to be the most appropriate placement. RI’s services work together with AOT for individuals with anosognosia. It is vitally important that all crisis care systems also utilize AOT given the fact that approximately half of those experiencing schizophrenia and 40% of those with bipolar disorder do not know they are ill and will not seek help on their own. It’s the number one reason why they refuse medication or do not seek treatment.
It’s time to stop thinking of involuntary commitment and Assisted Outpatient Treatment (AOT) as dirty words. AOT is mandated outpatient treatment, usually through court-order, for people with psychosis who have a history of medication noncompliance, as a condition of remaining out of inpatient units. This can include orders to adhere to prescribed medication, attend outpatient appointments or both.
Involuntary commitment and AOT are life-saving tools that bring treatment to those who are too ill to access treatment on their own. Those who disagree should listen to this podcast by Eric Dias, who serves on NSSC's Steering Committee. His interview with Eric Smith, an AOT graduate, is a powerful testimony to #AOT as a life-saving treatment tool. Smith is an articulate, well-informed, and thoughtful speaker. He does a great job of dispelling the myth that disability rights groups at the government-funded Protection & Advocacy for Individuals with Mental Illness (PAIMI) and others wish to perpetuate—the notion that it's better to die with one's rights on than to receive life-saving treatment.
NSSC supports these efforts and any others that will direct more funding to treatment for those with serious brain illnesses. Implementation of additional positions in the NSSC’s Points of Unity would further reduce the need for law enforcement involvement, and therefore the potential for acts of excessive force against clearly ill individuals of all races.
#BLM #SBILM #SilentNoMore #CostOfNotCaring
We, the National Shattering Silence Coalition (NSSC), are currently reaching out to the top 6 Presidential Candidates running in 2020, along with President Trump and Bill Weld, to have them declare to us their willingness to work for the welfare of the 18.2 million people affected by serious mental illness (SMI) in the United States — 11.2 million adults with SMI and an estimated 7 million children with serious emotional disorders (SED). NSSC wants each candidate to make a commitment to addressing the specialized needs of our long overlooked loved ones. We want to back a candidate who’s not afraid to make a stand against the disgraceful treatment of those living with mental illnesses like schizophrenia, major depression, or bipolar disorder. NSSC will support any candidate willing to offer a compassionate alternative to the current failed mental health system and jail system our country has relied on for over 50 years.
NSSC is asking each candidate to make a Pledge of Allegiance to the National Shattering Silence Coalitions Points of Unity. In doing so, they will be showing the millions of people who live with SMI/SED they are willing to right this gross injustice we’ve lived under for over 5 decades. Their pledge will show those with SMI/SED and caregivers, family members, and professionals in the trenches who’ve been on the front lines, battling this broken system that they are the type of candidate we can support with confidence.
We will be collecting their responses to share throughout our mental illness advocacy circles. Our coalition boasts many well-connected and professional individuals, all of whom are eager to learn of each candidate’s personal stance on our Points Of Unity. Please be advised that these POU’s have been created through the combined experiences and collective knowledge of years of dealing with failure from an inept and incompetent mental illness system. Many have lost their loved one through suicide, some have had their child killed by police, and others have lost their child to the criminal justice system where they are often abused, neglected and remain untreated, or to the streets.
We are the veterans on the front lines! We have found all the holes in this discriminatory, inhumane system of abandonment and suffering. NSSC is ready to be heard, and our voice is getting louder. We will not be silent anymore and watch our loved ones die slowly and cruelly from a lack of care. We want change and we want it now!
Below is a copy of the letter that will be sent to all Presidential Candidates for 2020 — In it, they will be asked to take a stand with us or against us!
“NSSC is a nonpartisan alliance of family members, individuals suffering from SMI, professionals in the trenches, and people who care who are uniting to ensure that mental illness, health, and criminal justice systems count those with SMI, SED, and their families in all federal, state, and local policy reforms. We are voices for the 11.2 million adults and 7 million children living with and dying too young from serious mental illness.”
The National Shattering Silence Coalition (NSSC) is asking the top 6 Presidential Candidates, along with President Trump, where they stand on our coalition’s Points Of Unity. By pledging their allegiance to those living with serious mental illnesses, their caregivers, and professionals in the trenches, those candidates who choose to will, if elected, work with Congress to develop a more compassionate system of care that effectively meets the specialized needs of our society’s most vulnerable, those affected by SMI/SED. By doing so, they will proactively reduce homelessness & incarceration rates, and prevent the unconscionable suffering of the over 54.6 million United States citizens (18.2 million with SMI/SED times 3 (average family size in 2019 is 4 people) equals 54.6 million) who live with, or care for someone living with an SMI/SED like schizophrenia, bipolar or schizoaffective disorder. That’s 22% of all eligible voters in 2019, not including professionals in the trenches and others who care (the US Census Bureau estimated that there were 245.5 million eligible voters in November 2016.54.6 million divided by 245.5 million equals 22%). Please keep in mind, our estimate is conservative. Others have estimated this number to be as high as 72 million or 29% of eligible voters.
Can You Pledge Allegiance To Our Points Of Unity?
As a nonpartisan coalition of individuals and organizations from diverse political, economic, and cultural backgrounds, we agree to the following shared values and principles of unity:
1. SAMHSA Reforms: Implement evidence-based programs and strong policies that will recognize mental illness as a medical disorder, not a behavioral problem.
2. PAIMI Reform: Focus on abuse and neglect, its original mission, instead of lobbying to prevent medically needed inpatient and outpatient treatment and supports.
3. HIPAA Reform: Clarify and improve HIPAA policies to include family rights and prevent the harm that occurs when parents who provide care are shut out of the process.
4. End Discrimination: Support the full repeal of the IMD Exclusion and call for parity and a right to treatment under Medicaid/Medicare.
5. End the Incarceration of those suffering from SMI and SED
Promote, strengthen and fund Assisted Outpatient Treatment, mental illness courts, crisis intervention teams, FACT and any other evidence-based pre-incarceration alternatives that permit treatment and care for seriously mentally ill people based on treatment standards that focus on the need for treatment and grave disability, not on danger to selves and others.
Dramatically increase the number of psychiatric hospital beds, providing a hospital bed instead of a jail cell.
Support evidence-based post-incarceration diversion solutions. Invest in re-entry programs for SMI and SED.
End the hospital practice of criminalizing the symptomatic behavior of mentally ill patients while under treatment or medical management. Patients must not be prosecuted and punished for the consequences of poor ward management, deficient facility dynamics and infrastructure, poor staff training, and other critical factors. People who work with this patient population, including security staff must be provided comprehensive education to impart knowledge and comprehension of psychotic disorders and the behavioral aspects of the disorders.
End solitary confinement for those suffering from SMI and SED.
6. Support the funding of programs designed to grow the mental illness workforce.
7. Support both long-term to permanent dignified institutional housing for those who are too ill to live in the community and supportive and independent housing for those who are able to safely live in the community.
8. Seek to identify other points in federal law that need reform.
Can you agree to unite with us on these issues to end the cruel and inhumane treatment of those who suffer from SMI/SED and their loved ones who suffer right along with them?
We are no longer asking; we are demanding that their needs be met. As caregivers, we are tired of shouldering the cost of not caring that the United States Government dumped on us over 50 years ago when it deinstitutionalized the US but failed to construct the community support programs that we were promised to replace state hospitals. We are tired of the absolutely discriminatory Institutes of Mental Disease (IMD) exclusion that locks our family members out of receiving care! We are tired of broken promises, and we are tired of this broken system that is destroying our children’s lives as well as our own. We have millions of people who are eager to know where each candidate stands on these key issues. One of you is going to become the President of The United States. It will be in your power to correct the barbaric, archaic, and inhumane treatment of those who suffer from mental illnesses. They do not deserve to die behind dumpsters or live in solitary confinement isolated from their families, just because the government has failed to take proactive steps to ensure their right to treatment for over 50 years! Time is up. We are sick and tired of waiting! Many of us have already lost a child to these diseases! If you become President, we want you to work with us to fix this horrendous stain on America’s human rights history. We are sick of our children living in cages, being killed by the police, and being lost to vagrancy and suicide — we need your help — and our kids need it even more!
WHERE DO YOU STAND?
Please Reply With Your Acceptance Of This Pledge Of Allegiance To Support The Mentally Ill In America And Address Their Specialized Needs Through Our Points Of Unity! Failure To Reply With Your Pledge Of Allegiance Will Result In You Being Marked As “In Opposition” Of Our Points of Unity!
___ I Pledge Allegiance To NSSC’s Points Of Unity and Vow to See That They Come To Fruition During My Term as President of The United States Should I Be Elected!
___ I Reject Your Points Of Unity