The importance of crisis and warm support lines cannot be overstated.
The importance of crisis and warm support lines cannot be overstated in light of the 12 million yearly who contemplate suicide. According to David Meyers, an NSSC member and volunteer who serves on our Policy Action Committee, the sole presence of a help line made the difference between life and death.
Dave suffers from schizoaffective disorder. Dave had a hard time finding appropriate support. The lack of available services for his condition led to an avalanche of self-destructive thoughts and behavior. This culminated into physically devastating suicide attempts, and over a year of navigating between the county and state hospitals. David has expressed that a more pronounced presence of effective crisis response and warm help lines, compassionate housing, and counselors more understanding of the sensitive needs of people suffering from the traumatizing effects of serious brain disorders (SBD) could have prevented the catastrophic outcomes he experienced.
Prior to the COVID pandemic, the U.S. mental health care system was already failing to meet the needs of people struggling with serious brain disorders. The pandemic has highlighted the need for more substantial mental health services and supportive housing, yet both remain scarce. The Center for Disease Control and Prevention estimates that 12 million people yearly contemplate suicide, but only about 500,000 calls are made throughout the year. In 2019, 47,511 Americans died by suicide. It’s the tenth leading cause of death in this country and the second leading cause of death among people aged 10-34 in the US. According to the Commonwealth Fund Issue Briefs, May 21, 2020, the U.S. has the highest suicide rate among 11 high-income countries, and the rate has increased every year since 2000.
SAMHSA, in a March 2021 supplemental letter, detailed the importance of an effective crisis response system: “A fully realized crisis response system will have the capacity to respond, deescalate, and follow-through crises so that individuals in crisis not only land safely but also transition well onto a path of recovery. Services that include three elements are ideal: someone to talk with; someone to respond and/or a place to go for rapid treatment; and stabilization.” The new 9-8-8 National Mental Health and Suicide Prevention Number, going live across this country in July of 2022, has the potential to be that transformational crisis system to the millions in crisis, provided states kick in their share of funding to make services and supportive housing available to those calling for help.
In terms of someone to talk to, the need for both crisis and warm lines is crucial to ensure those who can be diverted away from crisis services will be, and those who are in crisis will have quick access to life-saving intervention. Warm lines were created to divert calls that perhaps aren't actual crises away from crisis services. However, there is a real need for these lines to also be staffed by professional counselors who can identify symptoms and behaviors exhibited by someone who is truly in crisis - something peers on warm lines are not trained to do. Dave knows from experience, It can be hard asking for help at all, so this makes trained, sensitive counselors necessary.
In terms of someone to respond, the National 9-8-8 number coupled with a robust system of both crisis care and long-term treatment services for those who need them, along with warm lines in every state has the potential to prevent people from carrying out the act of suicide. As for a place to go for rapid treatment; and stabilization, availability of services currently depends very much on the state of residence, where one lives within that state, and the presence of Medicaid based supports. This is why robust funding for mental health services/supportive housing in every state is so important.
What can you do to help us ensure that the 9-8-8 number is implemented successfully? Contact your Member of Congress today to ask what they’re doing to make certain there are adequate services and supports in your state to coincide with the implementation of National 9-8-8 Mental Health and Suicide Prevention Number in July of 2022. Remind them that, in order for the hotline to be successful, it’s crucial that local crisis centers be adequately equipped to handle the tremendous volume of calls already being experienced by call centers around this country. Let them know it’s high time we replace 9-1-1 calls with a fully functioning 9-8-8 system leading to help, not jail, or death by suicide or otherwise.
By Robert S. Laitman, MD
Schizophrenia is a complex genetic condition that presents as a neurodevelopmental and, far too often, neurodegenerative disease. It is a spectrum of disorders that, without treatment, results in a chronic psychotic state in most individuals.
Schizophrenia needs to be reclassified for what it is, a neurological syndrome. A better term to describe this varied condition is psychotic spectrum disorder. We are already aware of 108 genes that will increase the risk of developing schizophrenia. In families with these genes, clusters of other mental illnesses such as attention deficit hyperactivity disorder (ADHD) are also common. These individuals may have been spared some of the genetic risk or were not subjected to other stressors in life from conception onward (trauma, infections, drugs) that turn on at-risk genes (epigenetics) that would cause the full expression of schizophrenia.
My immediate family is an example of how stressors may affect gene expression. My grandfather and uncle had schizophrenia, and my aunt struggled with bipolar I disorder with psychosis. I had an idyllic upbringing with an ACE (Adverse Childhood Experiences) score of 0 and arguably was relatively spared. Yet my son, also with an ACE score of 0, was subjected to an in-utero trauma of gestational diabetes and developed schizophrenia.
Schizophrenia can be considered primarily a disease of gating. Gating is the ability of an individual to focus attention on a task while tuning out extraneous internal and external stimuli. People with schizophrenia frequently do not gate well and are therefore continuously flooded by stimuli. Even early in life, many people who eventually develop schizophrenia are much less social and have attention deficit disorders. No matter how hard they try, their minds remain jumbled. With this “unquiet mind,” they are increasingly stressed, resulting in inappropriate limbic activation. As further neurodevelopment occurs, especially during adolescence, this entire process accelerates as synaptic pruning (the brain’s natural removal of unneeded connections) occurs. The ability to gate worsens, and stress accrues.
Further limbic activation, (the limbic regions of the brain regulate emotional responses) driven by dopamine, occurs and, with this, symptoms of hallucinations and delusions become prominent. As gating continues to diminish, negative symptoms such as lack of motivation and social isolation appear, and cognition declines. All this leads to a “break” from reality. Often during this time, patients begin smoking cigarettes in an attempt to self-medicate and improve gating. Others try to quiet their minds with marijuana, which unfortunately, in these susceptible individuals, further exacerbates the psychosis.
Schizophrenia, therefore, needs to be thought of as a disease that often starts before birth. For example, one primary risk gene encodes the alpha-7 nicotinic receptor. This receptor system in utero is responsible for the full neurodevelopment of the brain’s “operating systems.” After birth, this receptor is positioned on inhibitory interneurons that are responsible for turning on and off sensory neurons. This process is a critical component of the gating mechanism. As sensory input comes in from a variety of sources, interneurons will shut down neurons that are processing the extraneous while turning on neuronal pathways that allow for focused attention. In patients with schizophrenia, this receptor system is not fully developed. From an early age, these children will often experience social anxiety, attention deficit, and other behavioral issues.
Not everyone with this gene develops schizophrenia. However, if these same individuals early in life are subjected to physical or emotional trauma from in utero (e.g., infection, drug abuse, starvation) to childhood physical or psychosocial stressors, there is a propensity for epigenetic triggers to give full expression to the illness. Even in individuals without obvious stressors, the illness may come to fruition. For instance, this can occur if they have another gene that results in overabundant synaptic pruning.
Synaptic pruning is a normal stage of development during adolescence and ideally would rid the brain of neural pathways that are redundant or harmful and strengthen “good” pathways. This gene is responsible for the expression of complement. Complement is part of the immune system that enhances the ability of antibodies and immune cells to clear microbes and damaged cells from an organism. It also promotes inflammation. When this gene is overexpressed, too much complement deposits on neurons, resulting in the microglia destroying or pruning these cells. The pruning is often most extreme in the prefrontal cortex, where most executive functioning occurs. In the general population, this gene by itself increases the risk of developing schizophrenia by 25 percent.1 Essentially these individuals were dealt an unfair hand.
The pathophysiology of schizophrenia spectrum disorders provides a format for a reasoned approach to treatment. We need to start at the beginning. We know that choline supplementation in pregnancy appears to improve the outcome of children who are at high risk of mental illness. Supplemented children have reduced rates of ADHD and social isolation in the first four years of their lives.2 The hope is that these children will have a reduced risk of developing schizophrenia. In rats, it has been shown that choline supplementation increases the expression of alpha-7 nicotinic receptors. This results in normalizing neurodevelopment and normal gating. Four grams, twice a day of Lecithin (phosphatidylcholine) should become a routine prenatal supplement. Once the child is born, attempts should be made to reduce possible epigenetic triggers. Inflammation is one of these triggers. For this reason, fish oil has been proposed as an early supplement in at-risk individuals. One gram of fish oil is innocuous and something that McGorry has demonstrated to decrease the progression of the prodromal syndrome to a schizophrenia syndrome.3
Finally, early intervention in psychosis is critical. Inciting agents that are known to increase the risk of developing psychosis, such as stimulants and cannabis, should be eliminated. And, agents that are effective at attenuating the syndrome should be used as early as possible. Clozapine, for this reason, should be used at the inception of illness. Not only is it the most effective agent, it is the only agent that has direct effects on the microglia and blocks the overabundant synaptic pruning. Finally, clozapine has been shown to effectively restore alpha-7 nicotinic receptors at the interneurons. This leads to improved gating and continued improvement.4
Why clozapine first?
The initial response to any and all antipsychotics for initial treatment is reported to be anywhere from as low as 40 percent to as high as 70 percent. When a patient with schizophrenia does not respond initially and requires a second antipsychotic, not including clozapine, the response rate is seven percent, and usually, this is only a partial response. However, when this same refractory patient is given clozapine, the eventual response has been reported to be 50 to 70 percent.5 My results have been even better than this. A response to clozapine can be delayed for over one year, so it is important not to give up prematurely. The current guidelines have clozapine as only a third-line agent. There is now enough clinical evidence to move clozapine up to a second-line agent at the very least. My contention is that it should be the first agent used.
Is clozapine the best choice as a first-line agent?
Clozapine has shown advantages over other typical and atypical antipsychotics clinically, neuropsychologically, and socially. Clozapine contributes to the improvement of positive, negative, affective and cognitive symptoms in addition to reducing drug abuse, aggressive behavior by 38 percent when compared to Olanzapine and Haldol, and suicide attempts by 84 percent when compared to typical antipsychotics and 25 percent with Olanzapine.6 It is superior in terms of therapeutic adherence,7 quality of life, self-perceived satisfaction with treatment, and overall survival.8,9,10 Furthermore, clozapine is generic and, despite the stringent monitoring required, has been demonstrated to be the most cost-effective antipsychotic. Special emphasis on early intervention is critical to stop clinical, neuropsychological, neurophysiological, and neurostructural decline. Effective treatment using pharmacology, psychotherapeutic modalities, and psychosocial support needs to be the standard. A global supportive approach can change the trajectory of the illness and often restore function to the premorbid state. In the RAISE trial, they found that early effective treatment in the first 18 months of the illness resulted in the best outcome.11 However, even in this population, the longer the duration of untreated psychosis, the worse the outcome. Further support of this was provided by Yoshimura in 2017.12 They demonstrated a critical treatment window for clozapine treatment of resistant schizophrenia. Treatment after 2.8 years of known disease did not yield nearly as good outcomes as earlier treatment.13
In the 2017 Schizophrenia Bulletin, Schoenbaum reported the 12-month mortality in commercially insured young people with incident psychosis in the United States.14 It is an astounding 24 times greater than the general United States population aged 16 to 30. We know that most of this excess mortality is from suicide, violence, and concomitant drug abuse. Clozapine has unique beneficial effects in all domains. We are failing these individuals, as clozapine use in this setting in the first year is presently nil.
Another critical analysis supporting this argument was published in JAMA Psychiatry and authored by Tiihonen. He looked at the real-world effectiveness of antipsychotic treatments in a nationwide cohort of 29,823 patients with schizophrenia. Of these, 4,603 were newly diagnosed. In Sweden, prospectively gathered national databases were linked to study the risk of rehospitalization and treatment failure from July 1, 2006, to December 31, 2013, among all patients with schizophrenia from age 16 to 64 years in 2006. Clozapine and long-acting injectable (LAI) antipsychotic medications were the pharmacologic treatments with the highest relapse prevention rates. The risk of rehospitalization was 20 to 30 percent lower for those patients treated with clozapine or long acting injectables (LAIs) overall. The lowest rate of treatment failure was observed for clozapine with the LAIs in a distant second place. All other oral antipsychotics outside of clozapine were inferior in their efficacy.15
Given all of the overwhelming data of clozapine’s clear superiority in all settings,16 I believe that using clozapine at the debut of the disease gives the patient suffering from schizophrenia the best chance for success. Resistant schizophrenia was merely a “big pharma” construct to extend a patent giving clozapine a new drug indication. It is time that this far too often devastating illness is given the appropriate early aggressive treatment required to get the best outcomes.
1) Freedman, R., and R. G. Ross. “Prenatal Choline and the Development of Schizophrenia.” Shanghai Archives of Psychiatry , vol. 27, 2015, pp. 90–102.
2) Freedman, Robert, et al. “Higher Gestational Choline Levels in Maternal Infection Are Protective for Infant Brain Development.” The Journal of Pediatrics, vol. 208, 2019, pp. 198–206., doi:10.1016/j.jpeds.2018.12.010.
3) McGorry, Patrick D, et al. “Early Intervention in Psychotic Disorders: Detection and Treatment of the First Episode and the Critical Early Stages.” Medical Journal of Australia, vol. 187, no. S7, 2007, doi:10.5694/j.1326-5377.2007.tb01327.x.
4) Opler, Lewis A., and Robert Laitman. Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Help. 4th ed., 2017.
5) Stahl, Stephen M., and Jonathan M. Meyer. The Clozapine Handbook. Cambridge University Press, 2020.
6) Meltzer, Herbert Y. “Clozapine Treatment for Suicidality in Schizophrenia: International Suicide Prevention Trial (Intersept).” Archives of General Psychiatry, vol. 60, no. 1, 2003, p. 82., doi:10.1001/archpsyc.60.1.82.
7) Lieberman, Jeffrey A., et al. “Effectiveness of Antipsychotic Drugs in Patients with Chronic Schizophrenia.” New England Journal of Medicine, vol. 353, no. 12, 2005, pp. 1209–1223., doi:10.1056/nejmoa051688.
8) Meltzer, Herbert Y. “Clozapine.” Clinical Schizophrenia & Related Psychoses, vol. 6, no. 3, 2012, pp. 134–144., doi:10.3371/csrp.6.3.5.
9) Taipale, Heidi, et al. “20‐Year Follow‐up Study of Physical Morbidity and Mortality in Relationship to Antipsychotic Treatment in a Nationwide Cohort of 62,250 Patients with Schizophrenia (FIN20).” World Psychiatry, vol. 19, no. 1, 2020, pp. 61–68., doi:10.1002/wps.20699.
10) Tiihonen, Jari, et al. “11-Year Follow-up of Mortality in Patients with Schizophrenia: A Population-based Cohort Study (Fin11 Study).” The Lancet, vol. 374, no. 9690, 2009, pp. 620–627., doi:10.1016/s0140-6736(09)60742-x.
11) Kane, John M., et al. “Comprehensive versus Usual Community Care for First-Episode Psychosis: 2-YEAR Outcomes from the NIMH Raise Early Treatment Program.” American Journal of Psychiatry, vol. 173, no. 4, 2016, pp. 362–372., doi:10.1176/appi.ajp.2015.15050632.
12) Yoshimura, Bunta, et al. “The Critical Treatment Window of Clozapine in Treatment-Resistant Schizophrenia: Secondary Analysis of an Observational Study.” Psychiatry Research, vol. 250, 2017, pp. 65–70., doi:10.1016/j.psychres.2017.01.064.
13) Stahl, Stephen M., and Jonathan M. Meyer. The Clozapine Handbook. Cambridge University Press, 2020.
14) Schoenbaum, Michael, et al. “Twelve-Month Health Care Use and Mortality in Commercially Insured Young People with Incident Psychosis in the United States.” Schizophrenia Bulletin, vol. 43, no. 6, 2017, pp. 1262–1272., doi:10.1093/schbul/sbx009.
15) Tiihonen, Jari, et al. “Real-World Effectiveness of Antipsychotic Treatments in a Nationwide Cohort of 29 823 Patients with Schizophrenia.” JAMA Psychiatry, vol. 74, no. 7, 2017, p. 686., doi:10.1001/jamapsychiatry.2017.1322.
16) Vermeulen, Jentien M, et al. “Clozapine and Long-Term Mortality Risk in Patients with Schizophrenia: A Systematic Review and Meta-Analysis of Studies Lasting 1.1–12.5 Years.” Schizophrenia Bulletin, vol. 45, no. 2, 2019, pp. 315–329., doi:10.1093/schbul/sby052.
TALK TO ME! I TALK BACK!
By Khadeeja Morse
In a psychotic episode, my son, Mikese, drove a car into a family who was bicycling outside their home on June 24, 2018. Pedro Aguerreberry, a 42-year old father of two sons, aged three and eight, was tragically killed as a result.
The state of Florida has determined that Mikese is not guilty by reason of insanity. On April 19, a judge will finalize this decision and determine where Mikese needs to be placed.
This horrible tragedy might never have happened if Mikese had received the treatment he needed—the treatment his brain illness deserved, and the treatment my son pleaded for when he took himself to our local police station and confessed he might hurt someone.
We will never stop reading about horrible events like my family’s until more people understand the obstacles to treatment our loved ones face, and until unjust laws are changed. That’s why I talk back.
Our fight continues to free Mikese from the criminal justice system and allow him to be treated in a psychiatric hospital.
We seek to have him removed from the criminal justice system completely, with no oversight. Mikese’s civil and legal rights were violated from the very beginning. Mikese was not in his sound mind to even be able to accept his Miranda rights based on all of the evidence at the time of the arrest. This was well documented in all of the records from the day of the arrest.
Why should Mikese be removed from the criminal justice system? There are a number of reasons.
Beyond the Mental Illness Stigma Is a Brain Disorder
Most people don’t realize schizophrenia and bipolar disorder are actually serious brain disorders (SBD). The American Psychiatric Association describes both schizophrenia and bipolar disorder as brain disorders.
Being diagnosed with one of these disorders is bad enough. Having a combination, which is what Mikese has, is worse. To further complicate things, Mikese also suffered from anosognosia, which is when a person lacks awareness of their illness. Anosognosia is a common symptom of schizophrenia and bipolar disorder.
Mikese had the wicked trifecta of schizophrenia, bipolar disorder and anosognosia. The hard, cold truth is that many people suffering from these illnesses end up homeless or incarcerated.
The IMD Exclusion and How It Contributes to Tragedy
The IMD exclusion prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease with more than sixteen beds. It basically discriminates because an illness is classified as “mental” instead of medical.
Since there’s no funding for mental illness, even if there are hospital beds available, a person with an illness classified as a mental illness can’t fill the bed. He simply gets released to his own accord, like Mikese was.
An excellent article by the National Shattering Silence Coalition explains why and how policies like the IMD exclusion discriminate against people with SBD, which is typically referred to as serious mental illness (SMI).
Why Classification Matters
I can’t give you a better example of why classification matters than another heartbreaking news story that happened on the same day as our tragedy. A distraught mother describes losing consciousness due to a medical emergency while bathing her infant daughter. Her baby drowned, and sheriffs classified this as an accidental drowning. You’ll hear her say she had no idea what happened. Click here to watch.
This video is especially hard for me to watch because when the police were at our house interrogating Mikese, I recall him saying the same thing as this mother. He said he felt something take over his body, and he didn’t know what happened.
The mother has a medical illness. Mikese also has a medical illness, but his is classified as a “mental” illness. Both conditions led to actions that resulted in loss of life. Yet each situation was handled very differently by the medical and legal systems.
Now can you better understand the ridiculousness of the IMD exclusion?
HIPAA Laws Further Complicate Things
In an additional unfortunate and related twist, HIPAA privacy laws often prevent families from finding out any information about their loved ones before, during, and after hospitalizations.
What’s worse is that loved ones are often released to the streets, alone, with no support or guidance. They are left to fend for themselves while managing a medical condition that significantly impairs how they think. How does that make sense?
Can you imagine just releasing to the streets someone suffering from a stroke or heart attack before they were fully recovered, without any notification to a family member or loved one about the condition, care, or treatment?
The deadly duo of the IMD exclusion and family-unfriendly HIPAA laws often creates an insurmountable barrier for families. I call it a deadly duo because this combination is what led to the tragedy.
When Mikese took himself to the police, they “Baker-acted” him and he was admitted to Gracepoint, a psychiatric hospital in Florida for people deemed a threat to themselves or others.
The Baker Act is the authorization to involuntarily confine someone for up to seventy-two hours. It is important to note that while the Baker Act involves involuntary confinement, Mikese requested help by initiating contact with the police. The fact that he sought help is part of why he should be freed from the criminal justice system and allowed to get the help he was seeking before the tragedy.
Mikese was still psychotic at the hospital, so much so that we had to take over his medical decisions because he wouldn’t take medicine and attacked a public defender who came to see him.
He was kept in the hospital for about seven days and released because he was supposedly stable. We know he was far from stable. Despite needing longer treatment to stabilize, he was prematurely released from the hospital because there was no funding for “mental” illness. The IMD Exclusion negatively impacted him.
Also, there was no aftercare to support him when he was discharged. Since he’s an adult, Mikese was released to the streets, alone, with a messy stack of hard-to-read paperwork, a bus pass and a “good luck.” Within days of his release, the tragedy happened.
Proof Is in the News
When we realized the police were not going to be truthful about what happened with Mikese, we knew we needed to speak up.
This was our first formal interview with a local news station. Listen all the way to the end when the reporter speaks to a local expert about the lack of available funding and space to support patients with mental illness.
As I have often said, this crisis of lacking mental health care is the worst kept secret in the country, getting very little media attention or funding.
Who Else Will Be Held Accountable?
This is why, after another local news story about Mikese’s sentencing, I wrote an open letter on Facebook to State’s Attorney Andrew Warren, asking who else he would hold accountable for Pedro Aguerryberry’s unfortunate and unnecessary death. On air, Warren states, "This case shows the consequences of Florida's broken mental health system, and the victim's wife and kids are left holding the pieces.”
His statement shows the great hypocrisy of the system, acknowledging only one side of the equation. It is true that the Aguerryberry family experienced a horrific loss that never should have happened. However, they aren't the only ones who are left holding the pieces.
Far too often, families like ours, who have been desperately trying to support our severely mentally ill loved ones with very few external resources, are left holding the sharpest pieces of the broken mental health system. We are marginalized and vilified because of the undesirable behavior of our loved ones. We get words and platitudes of understanding and support, especially after a tragedy or around election time, but not real, sustainable or meaningful proactive support.
Why I Talk Back
Click here for all images from my TikTok video. As you look at them, please keep in mind the whole story.
I talk back because my son couldn’t speak for himself. I talk back because it was very clear to us very early on that the police weren’t going to be honest about his brain illness. They had already begun to vilify and dehumanize Mikese during their press conference. They left out vital information about his illness and even the fact that they were the last ones to hospitalize him.
I talk back because there are thousands of people suffering from untreated SBDs. I talk back because those thousands of people have thousands of loved ones who are doing the best they can for their seriously ill loved ones. They too suffer profound pain and trauma as they watch their loved one slip away and are helpless to do anything about it.
I talk back because we need to be seen, heard and acknowledged. I talk back because we need help and not just lip service around election time or after a tragedy.
I talk back because we ask for help but what we usually get are bloodied fingers from the sharp, broken fragments of a failed mental health system we’re forced to piece together with our bare hands.
How You Can Help
I am a proud member of the National Shattering Silence Coalition and very much support their programs and platforms. The Calls to Action section of their website offers some great ways you can help support our cause.
Please also continue to keep our family and the Aguerryberry family in your thoughts and prayers.
Why do you talk back?
Please share your stories with us. Our stories must be shared with the general public who doesn't have a clue what we are going through. They do not know how incredibly broken our system of care for those with serious brain illnesses is. They have no clue that we are unable to get help for our loved ones. They have no clue that, instead of receiving treatment for their illnesses, our loved ones are abandoned, criminalized, and left to rot in jail or die in our streets. It's up to us to speak out and inspire change.
They must also be shared with Congress, our President, and anyone with the power to bring about the change we so desperately need.
Submit your stories to firstname.lastname@example.org. Please feel free to write them or, better yet, record an audio only if you wish to remain anonymous, or a video, if you are OK with us using your name.
Coordinator & Co-Chair Steering Committee, NSSC
tomorrow was yesterday
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.
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.
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
dying with her rights on
By Laurie Turley
In the zeal to impeccably protect the patient's civil liberties and rights, an increasing number of troubled and psychotic patients are what I choose to term dying with their rights on.--Darold A. Treffert, M.D.
The following story provided by Laurie’s anguished sister demonstrates the tragic barrier that current Health Insurance Portability and Accountability Act (HIPAA) regulations place between persons affected by serious brain illnesses, including schizophrenia, and access to effective treatment that could be monitored and augmented with the support and care of family members. This problem is most pronounced when the brain illness causes a lack of self-awareness of the disease, a condition known as anosognosia. The National Shattering Silence Coalition’s Points of Unity include its position that HIPAA is in need of modification to explicitly allow the sharing of information about diagnosis and treatment between healthcare providers and families of adults who present with unstable serious brain illnesses.
My sister, Carol, was a high honors student in high school, graduating valedictorian in her senior class and receiving a full scholarship to study journalism at an Ivy League college. Something happened while she was away at school, but my brother and I, being several years younger, weren’t privy to the hushed conversations between my parents and older siblings about just what was the matter. I knew Carol could be volatile and prone to outbursts of anger and irrational reasoning. I also knew she was creative and full of ideas about the world that I found intriguing and inspiring.
I Did Not Realize for Years That She Was Ill
I left home at seventeen when I went to college. I never really lived with my family after that, only returning home to visit on holidays. By then, Carol was living with a man with whom she bore a son. She held jobs—a staff writer for a magazine and a writing teacher at the local university. She wrote beautiful poetry. Writing and books were her love and her life. While family gatherings were often uncomfortable and awkward when she was around, I wasn't present to witness the worst of her behaviors. I was unaware of just how seriously ill she was and only knew she was “different.” I loved her, loved her writing, loved her creativity, and loved my sister for herself.
It wasn’t until several years later, after I had married, lived three states away, and my second child was an infant, that my mother called to tell me they had to have Carol committed to the state psychiatric hospital. Just like my mother's own brother, my sister was involuntarily admitted to the same state hospital where my uncle had lived many years before his death. I learned that my sister had inherited the family illness: schizophrenia.
Details of the years following that first hospitalization are sketchy, at least from what I knew. On trips home to see my family, I visited Carol in the hospital, in her home, and in the outpatient mental health center where she introduced me to her friends. I cried with her when her twelve-year-old son was removed from her home by Child Protective Services and put into foster care, where none of us were able to see him due to legal restrictions and a “conflict of interest” of our relationship with her. I rejoiced with her when she finally agreed to stay on medication and when she found a psychiatrist who was willing to work with her—in her words, “like a tinker, an alchemist”—until they found just the right combination of medication that would keep her stable for the next twenty years.
Even though she was medically stable, Carol still struggled daily to find her place in a world that couldn’t see her as the beautiful soul I knew. Most saw her only as a mentally ill person. Medication kept her stable, but she never fully recovered. She never broke free of schizophrenia and many of the symptoms that medication could not erase. Sometimes the medication failed, and she regressed as her medication was readjusted.
Carol aged prematurely, lost her teeth, was at times morbidly obese, and developed diabetes. She often had a dulled expression. She was violently assaulted in her apartment by someone who took nothing but her medication. Yet she maintained her generous nature and her creative drive to write poetry and fiction. I collaborated with her on compiling some of her poems, accompanied by my photographs, into a hard-cover book. In the spring before Carol died, we self-published this book and gave several copies to friends and family. She was even able to sell a few of them. It had always been her dream to be published, and even though this wasn’t the same as having her poems accepted by a large publishing company, she felt her dream had come true. It was the last good thing I was able to do for her.
Whole for a Time, But Then She Needed Help
A few years before Carol died, we began having long phone conversations. I was struggling with a crisis within my own family, and she alone was willing to listen to my problems any time, day or night. She talked me through many of my darkest times, having firsthand knowledge of the grief and helplessness that comes from seeing someone you love suffer. In exchange, I asked her probing questions to help me understand her disease. She generously shared insights into her illness and tried to help me understand what was impossible to comprehend. She was wise, giving, and forgiving. She was my rock of wisdom and support. When we spoke over the phone, my sister was complete and whole.
I visited Carol in her brand new apartment, which had been subsidized and furnished by charitable agencies. It was bright, with high ceilings, wood floors, and big windows. It had two bedrooms and clean furniture. I spent a weekend with her. We cooked meals and went shopping. She talked about wanting to teach a writing class again. I had every hope and reason to believe that my sister was going to thrive.
A little less than a year later, Carol began to sound halting in our phone conversations and sometimes rambled without direction, or her speech was slurred. She told me she had begun to hear voices again and that she was afraid she needed to have her medication adjusted. I encouraged her to do so soon. She promised me she would. She shared that she hadn’t seen her psychiatrist in some time but was going to make an appointment.
I now know that she probably never followed through. I believe that she had regressed too far into the illness to be able to make that rational choice on her own. Serious brain disorders such as schizophrenia take away a person’s ability to reason.
My own life situation took a dreadful turn. I was preoccupied with trying to cope with things at home, so I didn’t get to visit her that whole next year. When I finally did, nearly a year after she had moved into her new apartment, I found her lying naked on the couch. Her apartment had transformed from a comfortable, homey, bright space to rooms full of clutter so deep I could hardly make my way through. Unwashed dishes and molding food filled the sink and covered the stove. Dirty laundry, messy counters, and filthy tabletops created unsanitary conditions.
They Said She Was Her Own Guardian and Kept Me From Helping
How did this occur? I had to get help for her. With the help of Carol’s adult son and some other siblings, I got the numbers of her case manager and her former treatment providers. None of them would talk to me, except to say that my sister was her own guardian and had the right to refuse treatment, which she apparently did. Each of them told me that she was entitled to make her own choices, and there was nothing I or anyone else could do.
I knew because Carol told me, that she feared being sent “back up to the Hill,” which was what the state psychiatric hospital was called. I knew she feared to be in a locked ward and forced into treatment. I knew she had relapsed into a psychosis that rendered her unable to care for herself. I could not prevent her downfall, nor could I convince her to seek the treatment she desperately needed.
A visiting nurse knocked on the door while I was there to deliver her insulin, which Carol was responsible for administering to herself. The nurse tested her blood sugar levels. They were way above normal. While my sister sat outside on the deck and stabbed her arm with the needle of insulin the nurse had given her, I went with the nurse into the apartment. Amidst the filth, we discovered several vials of unopened insulin, evidence that she hadn’t taken her diabetes medication. It was obvious that she also hadn’t taken her antipsychotic medication.
I begged the nurse to help me help Carol. It was obvious that she needed to be on medication and back in treatment. If I could just make the nurse see and acknowledge that my sister was in need, surely she would file a report and help me get my sister into treatment. But the nurse repeated what every other care provider I’d called in the past month had told me: “Your sister is clearly in need, but she’s her own guardian. If she refuses treatment, there is nothing anyone can do.”
I left Carol in that horrible state, in that unsanitary, unsafe condition, with my heart broken. I returned home, promising her I would continue to call her and stay in touch. I promised myself I wouldn’t give up trying to persuade someone—anyone—to get her out of there and into treatment.
A week or two later, I received a phone call from Carol’s son. She had been taken by ambulance to the hospital with a serious and invasive lung infection. During the several weeks that she was under medical care, she resumed her psychiatric medication, and her ability to reason returned, even while her physical health continued to decline.
“They Should Have Let You Help Me. I Wasn't In My Right Mind.”
In one of our last phone conversations, Carol shared that she felt life returning within her, that she felt like she was awakening from a bad dream. She said to me, “I don't know how I got so bad. I was doing so well. How did things get so bad?” I told her we all knew she was deteriorating and tried to help her, but she had refused help. There was nothing we family members could do.
Her next words were among the last she ever spoke to me: “They should have let you help me. I wasn’t in my right mind.”
Not long after that conversation, the infection in my sister’s lungs—which I have no doubt began as a result of the unhealthy condition of her apartment—progressed into severe pneumonia. Despite the doctors’ efforts, they couldn’t clear the infection. After a week of intensive care, it developed into sepsis and took her life.
All our efforts to rescue her from descending back into the illness she couldn’t manage on her own had been futile. It took an invasive lung infection to get her back on antipsychotic medication, but it was too late to save her life. The laws designed to protect her civil rights were the very laws that prevented those who loved her most from helping her when she was unable to help herself.
Why Do Laws Deny the Most Seriously Ill Their Right to Live?
“They should have let you help me. I wasn’t in my right mind.”
Those words will haunt me until the end of my days. Those words are why I believe that families need to be listened to. Families, regardless of whether or not they have legal guardianship, should have the right to intervene and get their loved ones to humane and sound mental health treatment when they see the need. They’re the ones who see the signs first and most clearly.
My sister’s untimely death is why I believe that so many people who are left to “die with their rights on” are, in truth, denied their right to live because of our current restrictive laws. Carol’s last words to me continue to be my inspiration. They inspire me to fight for treatment for the seriously mentally ill who are unable to help themselves.
“They should have let you help me. I wasn't in my right mind.”
by Carol A. Snyder
Butterfly, stay away from my net,
It’s there on the ground.
I will not pick it up.
I will not chase after you as others do.
I would chase your colors, lovely lemons,
Butters, purples, monarch’s orange
and blacks away from the flowers
that others would snap their nets over.
Send you after the freedom
that you surely deserve.
I do not like being trapped.
Why should you?
THIS IS MY HEART, TAKE CARE
Because you’re probably going to squeeze my heart like clay,
I make it mud and send it to the river
to wash clean over stone and pebbles
to make it blue and green as the river water
fresh and sweet as river-rinsed air
And hope you’ll see it, what the river pours forth, as good.
even though you’ll probably never recognize me.
Even then, I wish this good for you.
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. We need your voices.
Treffert, Darold A. “Letters to the Editor: Dying with Their Rights on.” American Journal of Psychiatry 130, no. 9 (1973): 1041. doi:10.1176/ajp.130.9.1041.
By Sandra J. Nosek RN, BSN
People with serious mental illness (SMI) are one of society’s most vulnerable populations. Yet instead of compassion and care, people with SMI are met with indifference and discrimination. As a result, they are left homeless, jailed, and—as family members and clinicians know—subject to danger, physical illness, and suffering.
Serious Mental Illness Is Very Serious
An estimated 4.6 percent of the population has SMI, which includes diagnoses of bipolar disorder, schizophrenia, obsessive-compulsive disorder (OCD), and post-traumatic stress disorder (PTSD), to name a few. The National Institute of Mental Health (NIMH) defines SMI as “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.” Individuals with SMI may suffer from hallucinations, delusions, severe anxiety, mania, obsessions, and compulsions that are so debilitating they keep them from holding a job, maintaining relationships, taking care of themselves, or functioning in society.
SMI is a disease of the brain. Though most symptoms of SMI can be reduced or eliminated with medications, many individuals with SMI are left untreated. A major reason for lack of treatment is anosognosia, that is, lack of awareness of being ill intertwined with their inability to comprehend they need help. Without treatment, many individuals with SMI spiral downward, often leading to homelessness or incarceration.
How Did the Seriously Mentally Ill End up on the Street and in Jail?
In the mid-twentieth century, the United States deinstitutionalized people with mental illness by closing psychiatric hospitals. Americans thought this was the humane thing to do because conditions in institutions were appalling. However, the conditions on the streets for those with SMI were just as appalling. The most seriously ill who were unable to care for themselves were left without treatment and support because the outpatient system didn’t adequately provide services for them.
Policies That Hurt and Discriminate Against SMI
A series of ill-conceived policy decisions led to the mental illness crisis we have today--perhaps none more so than the IMD exclusion. The IMD exclusion is a policy that prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease (IMD) with more than 16 beds. This law prevents people with SMI from being housed and treated for their illness. It discriminates by treating mental illness differently than medical illnesses. In effect, it throws someone into the street who is too ill to care for themselves. We would never condone abandoning people to the street who have been diagnosed with cerebral palsy, quadriplegia, multiple sclerosis, stroke, or Alzheimer’s, but we routinely do it to people with schizophrenia and bipolar disorder.
Later legislation did not reverse this disastrous exclusion. In 2018, in response to the opioid crisis, President Trump signed the Individuals in Medicaid Deserve Care Act, which allows states to file amendments for thirty days of treatment in an IMD for low-income adults with substance use disorder. This legislation helped those who need treatment for substance use but ignored our SMI crisis. States have largely refused the difficult process involved in seeking a waiver of the IMD exclusion for the mentally ill.
Left Without Care
Today, more than 110,000 individuals with SMI are homeless and 392,000 individuals with SMI are incarcerated because of failed mental health policy. Chronic homelessness costs the taxpayer an average of $35,578 per year, and leaves the most vulnerable unable to meet their basic needs for shelter, food, and hygiene.
Incarceration of this population costs the state and federal governments up to $50,000 per year per person. Those in jail or prison are unlikely to receive adequate treatment. California’s proposed 2019/2020 prison system budget is $800 million for mental health care, yet the prison system is unable to meet the standards of care. In the United States, 29 percent of jails are housing individuals with SMI who have no charges filed against them. People with SMI are often charged with domestic violence, causing greater risk for homelessness and victimization.
Without public policy changes as well as family, community, and government support, those with SMI will continue to be left without care.
Federal Legislation Is Needed to Provide Supportive Homes for the SMI
We can’t reduce homelessness and incarceration significantly without repealing the IMD exclusion through new legislation. Call it the SMI Act. This “SMI Act” should include other provisions such as stipulating therapy to support individuals and families, but its most important task is eliminating the IMD exclusion. The act will make Medicaid match state funding for permanent housing for individuals living with SMI, in any setting, regardless of the number of beds, and eliminate the 190-day lifetime cap for benefits. The SMI Act will make Medicaid pay fifty percent, matching state funding, to provide permanent housing, food, treatment, and care to those facing this disease. This change is what we need to eliminate homelessness and incarceration due to SMI. Providing housing will remove individuals from the streets and jails who have SMI and benefit our communities by creating a safer atmosphere for all involved.
Why has it been so difficult to get the IMD exclusion changed or eliminated? One reason is lack of stakeholder support. Many government officials don’t see the need for the measure, perhaps because it doesn’t affect them personally. Lack of government support appears to be the biggest barrier to IMD reform. Others say increasing awareness and policy reform through active participation and prevention of homelessness is the key to eliminating homelessness and incarceration of this vulnerable population.
It is of the utmost importance for everyone to come together, talk, and write to promote this policy change. Write to members of Congress, senators, government agencies, mental health organizations, psychiatrists, medical doctors, nurse practitioners, law enforcement, the Department of Health and Human Services, and even the White House. Working alongside the National Shattering Silence Coalition in obtaining a repeal of the IMD exclusion and instituting a policy such as this proposed SMI Act will improve health disparities between the SMI and others, by reducing morbidity and mortality, and improving the quality of life for those living with SMI.
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.
By Kartar Diamond
My son has been evicted from nine board and care homes, a dual diagnosis center, and a couple of sober living houses. This is not unusual for a man in his twenties with schizophrenia. In some instances, he was evicted for causing property damage. He used to punch holes in the walls, and when asked why, he would blame the wall! He told me that the drywall was flimsy and thin.
So, who do I blame here? Do I blame the wall? The board and care? My son? The way I raised him?
I must blame the system. The system does not provide what our loved ones with schizophrenia need. It promised my son would have a roof over his head and be cared for, and it broke its promises, again and again, in so many ways. Because of their illnesses, our loved ones are not able to hold the system accountable and demand what they need. We family members beg the system for what turns out to be intermittent, barely adequate housing, where any brief crisis in our loved ones’ illness is enough to cause eviction.
I can only speak about our experiences in Los Angeles County, California. But I assume that the licensed (and unlicensed) housing challenges are similar across the nation. I am in the paradoxical position of wanting more board and care homes—licensed supportive housing specifically for people with serious mental illness—to be built in my county. Even though the reality of living in a board and care with a serious mental illness is pretty grim, the alternative for people with a brain illness is usually the street or jail.
Our Odyssey from One Short-Term Roof to Another
We first tried the sober living house option because therapists said my son should live with higher functioning people. Unfortunately, the owners and managers of the sober living houses were not educated or well-equipped to handle mental illness; they were trained to manage addiction matters. So my son did not stay there long.
We also tried a dual diagnosis facility, a name that implies that they cater to both mental illness and drug addiction, a common co-occurrence. In our case, the facility failed my son in both categories. Instead of giving him an eviction notice of thirty days, or even a few days, they ordered him to get out of his home in ten minutes. What they did to him was clearly an overreaction and illegal, and it propelled him into a period of homelessness.
Our only other option was a board and care.
What Is a Board and Care?
A board and care in California is a licensed facility specifically for those with mental illness. Let’s be honest: No person of sound mind would choose to live in a board and care. Some are better than others, but few have a wholesome, cozy, homey vibe. Most are not in particularly safe neighborhoods, and most are within walking distance of liquor stores and drug dealers.
In your average board and care, a person shares a bedroom in a noisy, dilapidated building with old furniture. There may even be bedbugs. My son lived at board and care homes with anywhere from fifteen to one-hundred-thirty people; occupancy numbers did not seem to correlate with the quality of care. Often, at least a few residents are actively unstable, behaving in psychotic and concerning ways that need professional attention. Unfortunately, many board and care homes employ people at minimum wage with no obvious training in mental health care.
Residents may go for weeks or months without showering, changing their clothes, or brushing their teeth. Staff will ignore serious lapses in basic personal hygiene and well-being. The only ill people spared from this neglect are those with actively involved family members.
Some board and care homes do not feel safe. Even if the building has locks for every room and surveillance cameras everywhere, your loved one cannot be sure their personal possessions will not be stolen. You cannot even be 100 percent sure that your loved one will not be assaulted by other residents—or worse, by staff members.
Very few board and care homes offer features or services that are genuinely therapeutic. Some offer recreational activities, but most residents don’t participate and little is done to motivate them. Lack of motivation is a common sign of schizophrenia. Many of those with schizophrenia don’t even enjoy watching television. Board and care homes are better than homelessness, but they are just about “warehousing people,” to quote one of the psychiatrists I was commiserating with one day. They are not about treating or curing people. This can be terribly disappointing for a parent to realize.
What’s on the Menu and Who Can Complain
Well-meaning people suggest that schizophrenia can be cured with a superlative diet and nutriceuticals. While this hope seems unrealistic, nutrition is very important to cognitive function, physical health, and moods. The sad fact is that board and care homes cannot afford to always serve fresh, nutritious food, even if they want to.
Your three meals and two snacks per day are generally not particularly healthy or tasty. Board and care homes buy in bulk and probably shop at Food Banks as well.
One memorable day, my son called me to say that he needed me to place $10 on his debit card so that he could take himself out to lunch. That day he was given a half-frozen, half-burned TV dinner for lunch, which was inedible.
I had to call the board and care to confirm this was really the case. As a parent of a man with schizophrenia, I am never 100 percent sure if my son is willfully lying to me or having a delusion. The board and care quickly confirmed that they had a “problem” in their kitchen that day and served residents frozen and burned TV dinners for lunch.
This kind of event shows how powerless our family members are to demand quality care. A non-mentally ill person would create a scene if they received such disrespect in a restaurant, and management would apologize. But if a mentally ill person expresses anger, staff may well ignore the person’s outrage, even when it’s justified, and chalk it up to their mental illness.
The Ideal Board and Care Would Offer Support and Services
For a person with serious mental illness to stand any chance of recovering or gaining more functionality, they need all kinds of support and services from family members and mental health professionals. But the costs involved are too much for many families to bear. Depending on a number of other influences, living in a board and care can make a person more, instead of less, symptomatic.
Board and care homes cannot evict people who don’t take their medication. If residents refuse medication, the staff can only wait and see if they become psychotic enough to qualify as being dangerous to themselves or others. After this legal/medical distinction is met, they can call the police or case managers and have them placed on involuntary holds at hospitals. This is often the board and care home’s ticket to eviction.
The Paradox: We Desperately Need More Board and Care Homes
Board and care homes in California are closing at alarming rates because they run at a deficit. Exact statewide rates of closure are unavailable, but the beds are rapidly disappearing. Los Angeles County alone lost 949 beds between January 2016 and May 2019, according to August 2019 figures from that County's Department of Mental Health. Since 2012, San Francisco County has lost more than a third of its board and care homes serving people under age sixty. A 2018 study by individuals working with the Los Angeles County Department of Mental Health and the Los Angeles County Board of Supervisors revealed that many board and care homes in the county need a budget twice the one they work with to just break even. Board and care homes accept as full payment $1,000 per month with many residents using their entire Supplemental Security Income (SSI) benefits to pay for their room and board. I think it costs more per day to put your dog in a kennel. Who in their right mind would open a new board and care with that kind of business model? This is a real crisis for people with mental illness who cannot live on their own or at home with relatives, and who need constant supervision.
With the recent closings, an increasing number of unlicensed group homes have cropped up that have all the above flaws and more, and do not answer to any regulators. They can provide or withhold whatever services they want. This is a step in the wrong direction.
While board and care homes are severely lacking in what they offer residents, we actually need more of them, not fewer, to prevent more homelessness among the mentally ill population. An estimated 25 percent of the homeless population has serious mental illness in the United States, and among those who are chronically homeless, the rate may be as high as 33 percent to more than 50 percent in some areas. We know that it costs less to properly provide care for people with serious mental illness than to allow them to succumb to the revolving doors of hospitalization, incarceration, homelessness, and legal services required when they aren’t provided the very basics to live safely and stabilize their mental illness. I often grieve over how much worse the situation will get before it gets better, if it ever does.
State or federal benefits like SSI should be greatly increased or supplemented to subsidize stays in licensed board and care homes, or government and nonprofits need to build licensed housing specifically for the care of people with serious mental illness, or both. Residential drug rehabilitation facilities, unlicensed group homes, sober living facilities, independent apartments, and mixed housing don’t do enough to move people with serious mental illness off the street and out of jail.