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
By David Meyers
My mania began as a freshman in high school in 1996. In a small town near Buffalo, New York, I was a top student in biology and earth sciences and voraciously pursued these interests. In researching the interconnections in nature, learning about the DNA double helix and the energizing actions of mitochondria in human cells, I was transported into a strangely tantalizing and visual world that piqued my curiosity.
I explored scientific literature in the local library, coming upon ecology, then chaos theory. Meanwhile, I was learning how to play guitar and was drawn into the music of Jimi Hendrix and Janis Joplin. I was incredibly active and energetic and was constantly searching for the next rush through performances in the drama club or winning races in track. Note that the high was from healthy activities, not drug use. I was a healthy adolescent at the tail end of puberty.
However, as with many people who pursue activities that bring pleasure to them—in my case, music, science, and running—a crash eventually came. In the spring of 1998, the hallucinations, delusions, and paranoia began to manifest. I survived on little to no sleep. My symptoms were so extreme that by April, I needed the safety of a hospital so that I didn't hurt myself or anyone else. Doctors thought I was on street drugs, but in reality, I was experiencing intense mania that made me feel like I was spinning in countless directions at warp speed. It was terrifying.
My mania finally subsided with medication, but after a three-week hospitalization, I felt flat. I had trouble concentrating, even when I attempted to read books I loved. But a welcome change was that my social anxiety and severe depression were mostly absent. I made a beautiful impressionist chalk pastel in occupational therapy that others loved. My circle of friends grew wider, and I became the lead guitarist of a punk band. Although my time studying intense detail was gone, I had an exciting life balancing drama club performances, birthday parties, and high school dances. I was a popular dude, only made possible through medications, which counteracted paranoia.
After high school graduation, I made the tough choice to pursue biology over English in my freshman year. I yearned to be like my dad, a master in science. After intense study in biology, I eventually acquired creative talents and sought information about major world events. But times became tougher due to the freedom of being a college student and lack of structure.
I became manic again in September 2001. I slept little and had grandiose beliefs in my ability to save the world from terrorism. I fancied that my guitar playing would bring peace from Osama bin Laden. I was devoid of reality and rude and belligerent with loved ones.
After three years of alternating between dorm living and my parents’ house, I moved into formal transitional living in Buffalo in 2004. In 2005, I declared English as my new major at the University of Buffalo and won my Social Security case.
My psychosis never completely resolved, and I would occasionally hallucinate complex patterns. As I joked with friends in the car, I likened the patterns to functions in calculus--a subject in which I excelled in college.
Suicidal ideation crept into my mind for the first time in 1998. Yet it only became a tangible idea five years later in 2003, when I created a beautiful original chalk pastel, with a suicide note left for my family. Thoughts of suicide would repeatedly arise and surface with no warning for the next four years, until I finally followed through twice, in 2007.
In April 2007, I found solace and safety at the hospital from scary and restless agitation with minimal sleep. I was discharged per my request, but I was not of sound mind. A better treatment team might have recognized that.
My dad picked me up from the hospital and dropped me off at home, where I took an entire bottle of lithium and endured a severe cutting episode. I felt that I might as well have given up. I had no hope that I would ever feel good. This manic agitation, with three packs of cigarettes a day, was terrifying.
My final attempt at suicide in August 2007 left me with a frontal lobe brain injury. It was the result of a desperate attempt to take my own life by exiting the passenger side of an automobile on the thruway in rush-hour traffic. Recovery from this trauma and coma required a year of recuperation in inpatient units.
In 2008, I began a much-needed extended stay in a state hospital, where I began recovering from years of trauma, self-injury, and mental illness. This stay provided the genuine rehabilitation I needed. It even led to a volunteer job upon discharge that lasted several years, as a group facilitator of creative expression and smoking cessation. Looking back, an extended hospital stay earlier in my illness could have prevented my near-death experiences.
The resulting health difficulties from frontal lobe damage, such as poor impulse control and intermittent memory loss, have made my life more complex. Independent living was challenging. For example, a low-stress threshold due to my brain injury made it difficult to handle the large and crowded buildings where the housing agency assigned me to live. My stress, plus more responsibility outside of my group home, brought more unpredictable temper tantrums. These tantrums led to my eventual expulsion from the housing agency.
The system had difficulty understanding my needs because of my dual diagnosis of frontal lobe head injury and bipolar I with psychotic features. Between 2009 to 2016, I was able to move into an effective group home, which was a better environment for managing my stress. I was slowly moving toward independence, but the route proved painstaking. Once again, my stress became hard to manage, but I felt it was worth the struggle. As I increasingly realized that I function better when not living in close proximity to others, I became proactive in advocating for a home where I could be as independent as possible.
Luckily, I was able to advocate with my case manager for my housing and treatments before the COVID pandemic started. I felt strongly that I needed a safe place to be completely on my own before I hit forty. Currently stationed in permanent housing, I’m stabilizing. I am in a solitary, one-bedroom apartment, but regularly stay in touch with treatment providers. My flare-ups have steadily tapered off. Although I struggle with anxiety nightly, my psychiatrist, psychotherapist, neurologist, cognitive therapist, and case manager effectively help me manage my independence.
My journey has had lots of challenges, but I’m genuinely happy with my current circumstances. My frustration with community living has made me realize I am a loner at heart. I now enjoy studying science and history at my own leisure, and my original art is framed on my walls.
I hope that describing the last twenty-four years of my history with mental illness can help to convince others that mental illness is real and that treatment really does help. Medications have been instrumental in my recovery, and I believe education on the positive benefits of medication needs to be more widespread.
People like me know you don’t need to use drugs to hallucinate. It’s not your fault if you are paranoid. You cannot just “get over it.” But if you keep the faith and stay open and willing to work with your doctors to find the right medication, you will discover that staying alive really is worth it — it's more than enough!
David Meyers earned an associate degree in interdisciplinary studies from the State University of New York - Empire State College. He was awarded the E. Lester Levine Memorial Scholarship based on science writing and human services in 2016.
With the presidential race well underway, we at the National Shattering Silence Coalition (NSSC)—those living with serious mental illness (SMI), family members, treatment providers of the seriously mentally ill, and their allies—were hopeful when we heard candidates had responded to a survey on mental health policy. That survey, which the coalition “Mental Health for US” sent to thirteen leading presidential candidates, provided an opportunity for each candidate to present their positions on mental health and addiction.
But when we read the survey questions and the candidates’ responses released in August, we were disheartened to learn that those with serious mental illness were ignored. Some candidates neglected to respond to the survey at all, indicating they do not consider mental health policy and the needs of those with serious mental illness important issues. Both the survey and the candidates’ responses overlooked many of the most obvious problems with our broken mental health system.
In their survey responses, some candidates focused on anti-stigma campaigns, investing in community mental health, suicide prevention programs, mental health parity, and integrating mental health services into schools. These programs do little to save the lives and health of the seriously mentally ill. Neither these programs nor Medicare for All would eliminate the most significant barriers to treatment.
The NSSC has solutions to address these barriers to treatment, which we outline in our Points of Unity. In July, we asked presidential candidates where they stand on these issues and requested that they sign our Serious Mental Illness Points of Unity Pledge of Allegiance For Presidential Candidates. We sent the pledge to the top six Democratic presidential candidates—Joe Biden, Elizabeth Warren, Bernie Sanders, Pete Buttigieg, Kamala Harris, and Beto O’Rourke—along with President Trump and Governor Bill Weld. Not one of these eight candidates has responded.
The Impact of Serious Mental Illness
Serious mental illness is a medical illness that needs treatment. But right now in the U.S., of the estimated 54.6 million family members of those with SMI—22% of all eligible voters—up to half of them are unable to get their loved ones into treatment, even when they desperately need it.
A staggering 1.8 million people per year who suffer from SMI are booked into jails when they should be in hospitals. While the vast majority are arrested for misdemeanors such as trespassing or disorderly conduct caused by their illness, psychosis causes violent behavior in some individuals with untreated serious mental illness. Too many are incarcerated because our mental health system failed to provide treatment that could have prevented these actions.
Our family members are not getting the help they need because of the lack of understanding of SMI by far too many in government and their failure to understand that the #CostOfNotCaring far exceeds the cost of caring for this vulnerable population. Unfortunately, our presidential candidates do not appear to understand the importance of addressing this humanitarian crisis. We are more than ready to help enlighten them.
The Most Pressing Barriers to Treatment of the Seriously Mentally Ill
Anosognosia. Probably the greatest misunderstanding among policymakers about SMI is the assumption that everyone who needs psychiatric care has the capacity to independently seek and adhere to treatment. Those of us who have a seriously ill family member or regularly care for them professionally know all too well that those with schizophrenia or bipolar disorder often do not realize they are ill. This lack of insight is called anosognosia. According to the Treatment Advocacy Center, anosognosia occurs in 50% of individuals with schizophrenia and 40% with bipolar disorder. Anosognosia is the number one reason why people refuse treatment.
The standard of “danger to self or others.” Family members desperate to get help for their loved ones are forced to wait for them to become “a danger to self or others” before they can attempt to get help because involuntary commitment laws are so stringent. By the time our loved ones meet this standard, either tragedy has already struck or they are so ill that they become combative when the police are called to assist in getting them to a hospital. They are likely to be arrested before or after being taken to the hospital, or even shot dead on the scene. This inhumane practice of allowing people to deteriorate until they become threatening or violent must end.
Shortages of psychiatric beds, exacerbated by the IMD exclusion. Even those who do seek help on their own are often refused treatment. Too often, people in a mental illness crisis wait for days—even weeks—in emergency rooms because of psychiatric bed shortages. The number of psychiatric beds declined by 97% between 1955 and 2016. These closures have been driven in large part by a discriminatory law known as the IMD (Institutions of Mental Disease) exclusion, which bars Medicaid funds from being used in the treatment of adults (persons aged 22 through 64) in institutions of mental disease facilities having more than 16 beds for the specific treatment of mental disorders.
HIPAA Handcuffs. A frequent frustration to those of us who are battling for treatment for our loved ones is what we call the Health Insurance Portability and Accountability Act (HIPAA) handcuffs. Hospitals, prisons, and mental health professionals apply HIPAA privacy laws so rigidly (and often incorrectly) that families often can’t even ascertain their ill family members’ whereabouts, never mind participate in the treatment of their dangerously ill relatives. When our SMI family members over the age of 18 go missing, hospitals and shelters often won’t tell us where they went or even whether or not they are present. Doctors won’t tell us which medications have worked or have been prescribed. A person with anosognosia who doesn’t believe they are ill, or someone suffering from psychosis, is not likely to fill out a HIPAA release form, which would allow healthcare providers to share information with family members. Institutions take advantage of this circumstance to protect themselves from scrutiny and liability.
This issue was supposed to be resolved with the passage of the 21st Century Cures Act in December 2016, which required the Secretary of Health and Human Services (HHS) to issue guidance clarifying the circumstances under which healthcare providers and families can share and provide protected information about a loved one with SMI. It also required the Secretary to develop model programs and training for health care providers to clarify when information can be shared and training for patients and their families to understand their rights to obtain treatment information.
In December 2018, the HHS Department of Civil Rights issued its response to the required changes. This new guidance has not worked for family members and caregivers who are still being shut out when attempting to access care on behalf of their loved ones. The rules for when providers can share information are too ambiguous in the case of people suffering from a serious mental illness. Family members must be allowed access to their loved ones’ information when they are in the throes of psychosis, severe mania or depression, and when they are suffering from anosognosia. Family members who are the primary caregivers of someone with SMI also need to be given access to the treatment team and kept informed of current medications and appointments.
The presidential candidates’ responses reflected no awareness of these problems. The candidates didn’t seem to know that some people with mental illness need hospitalization as well as the informed help of their family members. Instead, their responses ignore the needs of the seriously mentally ill, perpetuating a broken system that is failing those living with SMI and putting them on the path to homelessness, incarceration, or death.
Our Points of Unity, offering clear solutions needed to provide compassionate care for those with SMI, are described below. To the presidential candidates, we are waiting for your response and your pledge to help those with serious mental illness and their families. How will you help fix the broken mental health system and enable our loved ones with serious mental illness to receive the treatment they need and deserve?
NSSC’s 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:
To all reading this blog post, please, if you care about those living with serious mental illness -- whether you are someone living with serious mental illness, someone who cares, a family member/caregiver, or a mental illness professional -- join us. It's free to join! We need your voices.
why i keep talking
By Alison Monroe
They want you to keep quiet. Talk anyway.
We family members of the sickest people with mental illness need to speak up because we have firsthand truth very few people have.
Unlike most people, we know mental illness is real. We know mental illness is not just the emotional issues and trauma and dysfunction that most people have. Our family members have a physical illness that affects their brain. They may have trauma and dysfunction and soul-sickness in addition to a brain illness, but because of their brain illness they cannot be made morally responsible for their own survival.
It Took Me a While to Know What I Was Talking About
D is 24 now, a schizophrenic meth user. For years the system has regarded D's problem as motivational, and it still wants to see it that way. The hospitals she stayed at tended to define her problem as drug abuse with some adolescent rebellion mixed in. If they could start her on medication for her brain, and impress on her how important it was to stay off drugs, she would be "in recovery" and thus able to live independently and maybe even get a job, and ready to be discharged from any hospital she was in. I followed her for five years, while she was discharged dozens of times—although as I describe below, the system didn't make it easy for me to do that—and during that time I began to understand how profoundly wrong the system's perception was.
I know now that schizophrenia often doesn't show up till the late teens. Her older brother had a schizophrenic break the year before she did; it gradually became obvious to all of us that there was something about him that would make him hard to live with and very hard for him to get a job. But we didn't understand what it was or who could do anything about it.
D ran away from home one Christmas Eve and turned up months later in a group home for teenagers. Someone had diagnosed her with schizophrenia and prescribed Geodon for her. After a month she pronounced herself cured and quit taking it. She commuted to an adult school and at least occasionally took meth. She was kicked out of the group home because she hit someone else. For the next five years, except for brief periods in other group homes, she was either in locked facilities or homeless.
Once during this five-year odyssey, D was released from an emergency psychiatric hospital—she had been in and out of them (5150'd, as we call it in California) some 15 or 20 times—and we were walking around in the City. We went into Whole Foods (a high-end grocery store) so we could use the clean, spacious bathroom there (bathrooms in the Tenderloin are pretty scarce). Reminded by a display of dollar sodas, she told me an anecdote about voices.
The last time she was in that Whole Foods, she was thirsty and saw a similar pyramid of sodas. She remembered she had no money. But a voice told her, “It’s all right, I’ve got it, it’s paid for.” So, gratefully, she took a can from the pyramid, opened it, and took a sip. Quickly a security guard grabbed her, twisted her arm up behind her back, dragged her into a back room, threatened to call the cops, and told her never to come into the store again. Whoever had told her the soda was paid for was nowhere to be found.
Thus I began to understand that a mentally ill person cannot be blamed for what their voices tell them to do. Telling people them to take responsibility for their actions is no substitute for treating them or for keeping them safe. Social worker Lynn Nanos, for example, understands this problem from eleven years of experience; she has dozens of anecdotes like this in her book Breakdown. It took me a couple of years to understand how totally illogical it is to make the sickest take the most responsibility.
During two horrible summers she was homeless (between short stays in emergency facilities) and slept in other people's tents or boats in several counties. She understood she had a government job where they paid her millions of dollars in secret bank accounts as long as she took meth every day. She had a case manager in our county—I was told she had "the highest level of care"—but to do anything for her they would have to find her, and as she had lost or sold her phone that did not happen.
Sometimes she would show up at my house to sleep, terribly thin and sunburned, talking about things I didn't understand and listening to people I couldn't see. She would sleep, but often she would bounce up again after a couple hours and say she had to go see or do something, and not come back for weeks. One time she stayed a couple days, and I was able to get her case worker to come over. He listened to her while she was lying in bed crying. D told him something that was hard for me to hear and hard to take in. She said that she had to take meth every day, at least a little bit, or her unborn baby would die.
I tried to explain to the people at the County that no weekly meeting with a social worker was going to be able to help D. I knew she could have no lasting hospital stay unless she was "a danger to herself or others,"but wasn't she a danger to her imaginary unborn baby? Surely the police would understand if they heard about this belief. Anyone would understand she had to be taken off the street, away from meth.
These two summers convinced that we were doing her no favor by giving her the chance to take meth. I saw her wandering around a park with only a shirt on—she told me it was a dress. I saw men following her around. She told me more than once that she was raped by strangers. She told me she washed out a meth pipe and injected the washings into herself. Her neighbors in homeless encampments complained to me that she was in danger and I needed to "take her home."
D is taking medications in a locked inpatient facility now, and on meds, but her delusions continue and have gotten worse. Her illness has progressed. She hears voices through chips in her head, and talks to them and to real people at the same time. A voice tells her meth is good for her or for her current imaginary unborn baby. She is sure her doctor told her she needs meth to stay alive.
While she has these ideas, it is not kind to her to give her the chance to take meth, any more than it would be kind to give an Alzheimer's patient the chance to hike on the freeway, or a drunken person the keys to a jet airplane.
It took a long time for me to see justice this way, and many people working in the mental health system still resist this vision. They think anyone, even those in terrible danger, who does not choose sanity and sobriety has a right to reject both.
The System Does Not Want Me To Talk
HIPAA (the Health Information Portability and Accountability Act) limits the information health providers can release. Our third Point of Unity in the National Shattering Silence Coalition is HIPAA reform: "Clarify and improve HIPAA policies to include family rights and prevent harm that occurs when parents who provide care are shut out of the process."
Our system interprets HIPAA pretty narrowly. Parents can't get information without a HIPAA release. I've tried to visit her at hospitals where nobody was able to tell her whether she was there or not, and struggled to understand case workers who were trying to alert me to her medical state and location without breaching some rule. Clients are not encouraged to sign HIPAA releases, and D told me hospital staff have actually advised her not to, telling her she's more likely to be "locked up" if she does. For parents to get information, clients have to sign a new release for every change in case management, every new stay in a facility, and for every different department in the overseeing agency.
Reforming HIPAA, though crucial to our struggle, has been met with resistance. Parents are up against a system whose beliefs, habits, bureaucratic interests, profit motives, and long-held idealism unite to keep parents out of the process. If the system didn't have HIPAA, it would have to invent it.
In my case, the system invented its own version of HIPAA when HIPAA wasn't strong enough to keep from me the information I wanted. Eventually, they quit accepting the HIPAA releases D signed even when she signed them. Her county conservator said that they could legally override these releases. I noticed that these withdrawals of permission happened when she was taken off Clozaril and I wanted to get her back on it (she does best on Clozaril). On the last occasion they withheld information, they accused me of violating HIPAA for telling her past and future providers what was going on with her treatment and her symptoms. Parents of course can't violate HIPAA. Nevertheless, D's caretakers persuaded her that I was in danger of being in legal trouble if she didn't sign a document cutting off information to me. After she signed that document, she signed another HIPAA release; but they ignore that release.
Why Do They Want Me to Keep Silent?
It's probably complicated. They want you to keep silent about what's happening with your loved one. It’s so much easier for everyone—except for you and your loved one.
I can understand that they don't want to be held accountable. No one working in the system wants to be blamed for the totality of disasters that happen daily. They took these jobs to help people, not to take the blame for a broken system and its broken parts. Unfortunately the result is that no part can be blamed and no one has to be accountable.
And many people working in the system seem to want to believe that everyone can recover with only voluntary measures. Workers are immersed in their jobs and find it hard to perceive a truth that is dissonant and makes them uncomfortable, even miserable. That some clients don't get better in weeks or months, or ever, and make horrifying, deadly decisions: no one wants to hear that.
A highly respected patients' rights advocate advised me, during this furor about HIPAA releases, not to share D's story without her involvement.
The advocate said:
"It is of serious concern to everyone involved in D’s recovery that her private and personal information has been shared far and wide with many many people who have no business hearing about D’s illness and her efforts to achieve meaningful recovery."
And again, she said:
"Maybe if you told D why you feel it important for her recovery story to be told to certain members of the mental health community, she would feel it is empowering to be consciously involved in advocacy efforts. You could help her have a voice, and she would know what is being said about her. To do that would be respectful of her constitutional right to privacy and communicate to her that she is in charge of her life and responsible for her recovery. Can you envision how this could achieve your goals? Can you see how positive and respectful this approach could be?"
I can see this. I wish, I wish, it could work this way. If she could take responsibility for her recovery, that would be wonderful. If she could overcome both her illness and her addiction, and help me write about it, that would be ideal. But if she takes responsibility for her recovery … doesn’t that mean she would also take responsibility for her disease? The idea horrifies me. Should she take responsibility for the effects of leaving her disease untreated, or not treating it the best way?
I've decided the most important thing is to keep her alive. Her life is more important than her privacy.
I Talk to Save Her Life
I talk to the public at hearings about mental health policy, and I send emails to other people involved in her care, to save her life. I don’t blame her for being mentally ill or using drugs, and nobody who stigmatizes her for this fully understands her situation. It’s not her fault she has a brain illness that has gone untreated for many months at a time. I believe I have gotten her another couple of years of life by speaking out about her situation and making clear to people that the danger she is in is not her fault. It does her no good to keep her illness and addiction a secret. I’m afraid that the worst thing that could happen to her—still a likely outcome—is that she will be on the street again, helpless, with no one knowing where she is or how to get her back into treatment, or in jail. Protecting her from rape, from injecting bad drugs, from AIDS, from violent interactions with police and others, and from incarceration that would traumatize and stigmatize her even more seems way more important than keeping her situation a secret. And in fact, when she is on the street, she gets better help from peers, police, and the system alike if they know about her mental illness.
I read that last New Years’ Eve, the body of Karina Banta, a woman just D’s age, was found in our county's landfill, having been dumped there by a trash truck from a transfer station not far from my house. Should the San Francisco Chronicle have kept it a secret that Karina had been homeless, mentally ill, and a drug abuser? Not at all; that information is part of her story and it helps the world to understand the danger our children are in.
Many, many parents of the seriously mentally ill tell people about the violence and tragedy their family has suffered. They do that to get help for their children, and even when that help comes too late to save their own child’s life, they do it to help others. See, for example, Dede Ranahan’s blog Sooner than Tomorrow, where parents tell their stories of seriously mentally ill loved ones who have killed other people or mutilated themselves. They tell these stories to save lives.
Khadeeja Morse, the mother of Mikese Morse, who ran over two bicycle riders in Florida in June 2018, has been telling the public the specifics about her son’s illness—to save him from execution. If she had not gone to reporters, to Facebook, and to every official she could find, with a wealth of detail, he would be facing the death penalty as a murderer. Instead, she managed to persuade the state prosecutor and the Sheriff that Mikese was not responsible for his actions and needed treatment. She was right to talk about him. She got him a chance at life.
I need to tell D’s story BEFORE she dies or gets involved in violence that sends her to the criminal justice system.
Sometimes, when you read a news story about a mass murder, parents do speak up, in the hope that people are willing to hear and put together the pieces. They say the person was "struggling with mental illness," they were "discharged with no services," they "fell between the cracks." We family members with firsthand knowledge can break this code so easily. Others will break the code, if we keep talking.
We Have a Chance to Change Things if We Keep Talking
The proponents of the civil rights of all mentally ill have campaigned sincerely for decades and won many victories large and small. Sincere passion drives the patients’ rights advocate I quoted above. The civil rights campaign, however, has overshot to the point where the system would like to pretend that mental illness doesn't exist and that little if any involuntary treatment or containment is ever needed. The passion for rights was real, and now it is misdirected and confounded with all sorts of bureaucratic inertia. But I think we have a chance to direct passion towards survival, treatment, and protection for our loved ones, if we can make people see what we see.
"What would happen if one woman told the truth about her life?
The world would split open." - Poet Muriel Rukeyser