MENTALLY ILL PEOPLE IN SAN FRANCISCO ARE CYCLING IN AND OUT OF EMERGENCY ROOMS by Heather Knight

Three people have forwarded this article to me. Heather Knight is a journalist who often writes about mental illness.

MENTALLY ILL PEOPLE IN SAN FRANCISCO ARE CYCLING IN AND OUT OF EMERGENCY GOOMS. ONE DOCTOR SHARES STORIES ABOUT OUR BROKEN SYSTEM.

Mentally ill people in S.F. are cycling in and out of emergency rooms. One doctor shares stories about our broken system

Dr. Scott Tcheng will never forget some of the people who come to his San Francisco emergency room in desperate need of help.

One man who arrived by ambulance looked like the Joker, his face and hands covered in animal blood. A 911 caller had spotted him eating a raccoon crushed by a car on a city street.

Tcheng has treated patients high on methamphetamines who are convinced a mouse is crawling inside their body or that someone has cut off their genitals with a sword.

One person on meth was treated after trying to steal a parked ambulance — with a patient inside. Another tried to captain the Pampanito, the floating submarine museum at Fisherman’s Wharf, but fell into the bay. He had hypothermia by the time a rescue team fished him out.

Just the other day, Tcheng treated a 31-year-old woman who is homeless, suffers from schizophrenia and has come to the ER about 150 times — usually to request pregnancy tests, but sometimes just for food and a place to sleep. This time, the pregnancy test came back positive, but the woman refused offers of hotel vouchers or a shelter bed. So the hospital released her back to the streets.

Other patients suffering from severe, untreated mental illness or meth-fueled psychosis have become violent toward hospital staffers, wrecked medical equipment, brandished knives and hurled their own feces. Some return to the ER shockingly often. Tcheng said one of his patients has visited emergency rooms around San Francisco hundreds of times in the past year.

What unites these patients, beyond their struggles, is their clear need for long-term care. But they’re usually not getting it. Not even in a rich city and a rich state that claim to be compassionate and caring.

The patients are often too sick to accept care. And frequently, there isn’t enough care, or adequate services, to meet their needs. Tcheng must send them back into the world, untethered, until the next ER visit.

“It’s so important that the people of San Francisco know about this,” Tcheng said, explaining his decision to go public about his patients. “They walk by it every day on Market Street and in SoMa, but the average San Franciscan doesn’t realize how deep it goes.”

Tcheng said he’s “cautiously optimistic” that a sweeping new proposal from Gov. Gavin Newsom could make a difference.

Called CARE Court, Newsom’s plan would require every county to provide needed treatment for people suffering from psychosis, whether due to mental illness or drug addiction, and would mandate that patients accept the help. Patients could be brought to the civil court because they allegedly committed a crime, because their involuntary psychiatric hold is ending or because they’re deteriorating on the streets.

If they don’t comply with a court-ordered treatment plan, a judge could turn them over to the regular criminal system, order additional involuntary holds or move toward conservatorship.

Newsom’s proposal suggests he has learned lessons since his time as mayor, when he dealt with recession-fueled budget cuts in part by slashing the number of psychiatric beds at San Francisco General Hospital. A dire bed shortage remains all these years later. He also cut beds in homeless shelters and closed drop-in centers where people could get help during the day.

San Francisco General Hospital is now the only hospital in the city with a dedicated psychiatric emergency room, but there are far more people needing its services than there are beds. So they’re often taken to regular emergency rooms for stabilization or because they also have medical issues that need to be addressed.

That sometimes means other patients — with strokes, heart attacks or injuries — must wait, Tcheng said.

“Someone coming in three and four times a day takes a toll on the system,” he said. “It’s incredibly dispiriting.”

He compared the fight against San Francisco’s threefold crisis — a lack of housing, mental health care and drug treatment — to building a three-legged stool. Addressing just one or two legs won’t work.

Tcheng, a 36-year-old Potrero Hill resident, works in four emergency rooms around the city, but couldn’t get permission from his bosses to name them. But really, they’re interchangeable — each one flooded daily with unsheltered patients suffering from psychosis who need treatment but aren’t getting it.

Rachel Rodriguez, a social worker in another emergency room in the city, confirmed the crisis exists at her hospital, too. She couldn’t talk for a while Tuesday because, as she texted, her ER was “bursting” with psychiatric patients. She said social workers are so strapped caring for psychiatric patients that they often can’t provide help to others who need it — such as domestic violence victims or those hurt in car crashes.

She has started emailing the Department of Public Health every day with a tally of the people waiting for acute psychiatric beds in her hospital alone. One email from last month showed 15 patients ranging in age from 21 to 86, a few waiting a month or longer.

Rodriguez said she’s reserving judgment about Newsom’s plan. But her husband, Charlie Berman, a clinical social worker in San Francisco, said he fears it’s nothing more than “a political facade masking the ineffectuality of a rotten system,” and called the city’s emergency rooms “extensions of the Tenderloin with ambulances providing taxi service in between.”

Berman said the governor’s plan will fail without a major investment in locked psychiatric wards and beds designed for people with both mental illness and substance use disorder. Both are very expensive.

Tcheng is more hopeful — provided the governor finds the money to pay for treatment through CARE Court. Civil libertarians are already speaking out against the plan, saying that mandating care is inhumane and not as effective as providing voluntary services, but Tcheng said the real inhumanity is playing out in the city’s emergency rooms every day.

“I fundamentally reject the notion it’s more compassionate to let these people live on the streets and die in alleyways than to mandate that they get care,” Tcheng said. “I just think it’s appalling what San Francisco has allowed to happen to some of these patients.”

He cited Mary Botts, the San Francisco homeless woman dubbed “Princess Leia” for often wearing her hair in buns on the sides of her head, sometimes held together with syringes. She frequently walked into traffic at Castro and Market streets and slept in the gutter.

Tcheng said he treated her at least a dozen times — but kept releasing her back to the streets because she didn’t want help and there was nowhere to send her. She died of a drug overdose in November 2020 at age 28.

At a Board of Supervisors hearing last week, Superior Court Judge Michael Begert addressed the severe shortage of treatment beds. He oversees drug court, which aims to clear defendants’ arrests if they can prove they’ve successfully addressed the drug problem that led them to commit the crime. Begert said he has never been able to access a treatment bed for somebody who allegedly committed a crime and suffers from both mental illness and a drug addiction. Instead, such people often linger in jail — with one person waiting 264 days behind bars for a bed — until they’re eventually released, having further deteriorated while jailed.

“This is not treatment on demand, and they’ve been talking about treatment on demand for at least 25 years,” Begert said.

Two years ago, the Department of Public Health released a study stating the city needs 400 more treatment beds, but it’s added only 89 beds since then. And even 400 might not be enough, said Supervisor Hillary Ronen. She said the board hearing left her with “a mix of exasperation, sadness, frustration, but also a new resolve” to vastly improve the city’s mental health system.

Ronen said she doesn’t know enough about CARE Court to form an opinion, but hopes it’s not another “shiny new program” from a politician wanting to look good.

For now, Tcheng will keep seeing the same patients in his ER, and many will leave no better off than when they arrived. The man who tried to steal the submarine got released after he slept off his high. Tcheng doesn’t know what happened to him after that.

As for the man who ate a raccoon?

Tcheng said he asked a psychiatrist to evaluate whether he should be treated under an involuntary hold. But, he said, the man wasn’t deemed to fit the requirement of being “gravely disabled” under state law if he could secure his own food. Even if that food was roadkill.

Tcheng said he managed to get a different doctor to test the man for rabies, but he lost track of him after that.

“Hopefully, he got some sort of psychiatric care,” Tcheng said. “But knowing San Francisco, I doubt it.”

San Francisco Chronicle columnist Heather Knight appears Sundays and Wednesdays. Email: hknight@sfchronicle.com Twitter: @hknightsf

Dr. Scott Tcheng is an emergency room physician at several San Francisco hospitals.

Photo: Carlos Avila Gonzalez/The Chronicle

From the oldest

DELIVERED FROM CRAZY by Katie R. Dale

Sweet sixteen wasn’t so sweet for me. As soon as I celebrated that birthday and started a new private school the same week, a dark cloud gathered over my mind. Instead of the public school hustle through hallways and crowds of students, the fewer classmates and feelings of being observed revealed a psychological distress I’d never known before. Soon, due to the switch in educational environments and a predisposed genetic case of bipolar disorder, my paradigm shifted and my mood dropped. I entered into a clinical depression that could not be prayed away. 

Classmates and teachers with good intentions misread my quietness for my introverted personality. Maintaining my grades became a struggle, and the dark cloud turned into a storm. Hate and self-loathing became a daily battle within myself. I turned my back on God. Surely, death would be better. 

By this point, I was desperate to feel anything but apathy and despair. I contemplated jumping out of the car on the highway, stabbing myself, or taking a bottle of Tylenol. The desires to make new friends, excel at academics, and tackle my amateur soccer skills waned. My parents noticed my change in demeanor and took me to a Christian psychiatrist by the new calendar year.

The psychiatrist prescribed an anti-depressant. That would have helped had I had a case of clinical depression. Unfortunately, unbeknownst to all of us, I had bipolar depression. Which meant that an anti-depressant alone would only serve to send me into a manic state of mind. With bipolar disorder, you typically need an antidepressant and a mood stabilizer or antipsychotic. The mood stabilizer would have helped me from getting too high toward the other “pole” of bipolar: mania. In my case, which is less common, I went into psychosis, a state of a break from reality where symptoms of delusions, hallucinations and more abnormal behaviors present themselves.

My speculation is that the psychiatrist switched my prescription a little less than two weeks after starting the antidepressant, after I complained of rapid weight gain. This “cold turkey” change messed with my mind’s equilibrium, and I launched into a state of psychosis where I heard voices, became paranoid, and exhibited unreasonable outbursts in school. Shortly thereafter, my parents admitted me to the juvenile psychiatric department of a local hospital to be monitored for the next three weeks.

Behind the secured doors of the unit, I found a crew of competent and compassionate caregivers. I also turned back to God. In fact, clinging to Jesus amid strangers and other youngsters battling their own internal struggles was a test of faith. Being able to lean on the nurses in the shadows of the valley of paranoia and reciting the Twenty-third Psalm with them brought me unspeakable comfort. From the nurses to the techs, the level of care I received was evident in the way they treated me and helped my parents to guide me through the hospitalization. Although my symptoms persisted, and finding the right medication was a trial-and-error process, I was in the best place to find a solution to my fractured mind. 

After discharge, I was sent to an outpatient program during the remainder of the school year and summer. My teachers graciously assisted me in completing my schoolwork and passing the grade. I returned to the public school the following fall and finished my high school career at the public high school. By getting back to a routine, I returned to the creative, introverted, driven person I had previously been. My mental health improved as time went on, as long as I took my medicine and kept my psychiatrist and therapist appointments. I maintained a fully functioning level of life and was able to graduate high school, enter and complete college, meet and marry my husband, and lead a fully functioning, abundant life.

None of us are immune to the effects of mental illness, whether it is diagnosed in someone we know personally or ourselves. It can be a scary place to travel through and the journey can be long and dark. My psychotropic medications have continued to help keep my brain chemicals balanced, and more than that, I have the strength in our Lord who makes all this possible. 

If you or someone you know are experiencing extreme changes in normal behaviors to prevent you from healthy functioning in life, reach out to a mental health professional. And if you or someone you know are in crisis, call 9-1-1. To reach the National Suicide Prevention Lifeline, call 1-800-273-8255, or text 741741 for a text-based method.

The information included in this article is not intended to treat, diagnose, or medically advise.

About the author: Katie R. Dale has authored But Deliver Me from Crazy: A Memoir, on her experiences through the psych wards into recovery, and blogs regularly regarding her reconciliation of her Christian faith and mental illness on KatieRDale.com. She’s on social media @KatieRDale and when she isn’t caring for her daughter at home, she is out training for a half marathon or 5k with her running friends. She resides in Eglin AFB, Florida with her hero in uniform, Chris, and daughter Kylie Grace.

Katie R. Dale

BEING THE MOTHER OF SOMEONE WITH SCHIZOPHRENIA by Susan Inman

Susan’s articles about mental illness policies have been published by numerous publications including Huffington Post Canada. Susan Inman’s daughter has lived with schizophrenia for over 20 years. Susan is a retired public school teacher and volunteers for many advocacy projects. She and her family are joint US-Canadian citizens.

Mothers, like me, who provide caregiving for adult children with schizophrenia do not have much of a voice. An unusual opportunity to learn more about the situations of these women arose in 2015 when the European Federation of Families of People with Mental Illness (EUFAMI) conducted a large survey of family caregivers in 22 countries including Canada where I live. The survey found that the typical family caregiver is a woman around 60 years of age who believes she will be caring for her adult child for the rest of her life; she also believes that she is dealing with a larger mental health system which does not meet either the needs of her family member or her own needs.

My personal coping strategy has been to try to identify and write about the larger systemic problems that hinder the development of an effective mental health system for people with severe mental illnesses. The problems I’m focusing on here can be discussed separately, but there is tremendous overlap between them.

Five problems I’ve seen:

1. Lack of adequate public mental illness literacy campaigns

Unfortunately, both my undergraduate and graduate school education proved to be a barrier to understanding what was happening to our daughter when she began to flounder as a teenager; this ignorance led us to seek help from a high profile therapist. In this article, I pointed out the damage that can occur when families reach out to credentialed clinicians who have inadequate science-based training about psychotic disorders. I hear numerous stories from other parents who, because they lacked basic information, made the same kind of mistake that we made.

Neither Canada nor the US has a national mental illness literacy campaign. The public isn’t learning about early warning signs of illnesses like schizophrenia, the steps to take when they see these signs, or the kinds of treatments that are evidence-based. This ignorance also contributes to stigma, since people can easily assume that the disturbing behavior they have witnessed from someone in psychosis is freely chosen.

Instead of large, publicly funded campaigns that ensure people have adequate information about psychotic disorders, we see a growing emphasis on fighting stigma. Unfortunately, too often the anti-stigma rhetoric contains messages that are not in the best interests of people with schizophrenia. For instance, in the current charter challenge to BC’s Mental Health Act, the Council of Canadians with Disabilities (CCD) are the plaintiffs. In seeking to eliminate involuntary treatment, they argue that the current Mental Health Act is unjust because “This law equates having mental health problems with being mentally incompetent to make decisions.” The CCD never seeks to educate people about or even acknowledges that people in the midst of psychotic episodes are not able to make rational decisions; their well-being is jeopardized if this is not understood. In the name of fighting stigma, some groups claiming to represent people with severe mental illnesses deny core features of psychotic disorders.

Too often anti-stigma campaigns either avoid mentioning or minimize the more debilitating symptoms of schizophrenia. In this article about stigma and inclusion, for instance, a leading anti-stigma researcher maintains that structural stigma prevents people with a mental illness from getting jobs. There is a very high rate of unemployment among people with schizophrenia. However, there is no attempt to educate the public about the often severe cognitive losses that are a well-researched part of schizophrenia. These losses include difficulty with working and short term memory, concentration, problem solving, judgment, and social skills. These kinds of difficulties can create enormous barriers to getting and keeping most jobs.

It is hard to address key problems like cognitive losses if they are not acknowledged. The most helpful approach to these problems would be to educate the public, service providers, educators and policy makers about them and to promote the implementation of the evidence-based cognitive remediation programs that have proliferated in the past twenty years. Unlike Canada, many other countries have begun to include cognitive remediation as a core component of psychosocial rehabilitations programs. Meanwhile, family run organizations, like the British Columbia Schizophrenia Society, try to figure out how they could help support the implementation of these much-needed programs.

While we do not have adequate public mental illness literacy campaigns, we do have high profile and very public communication promoting the notion that all mental health problems arise from adverse social factors. The president of the American Psychiatric Association recently published this kind of article in Newsweek. It fails to give the public any idea that, for example, genetic research continues to make progress in searching for causes of schizophrenia. Supporting the idea that illnesses like schizophrenia can be prevented by changing social environments energizes the re-emergence of the rampant mother blaming of earlier decades that never disappeared. I rarely meet a mother who has not been blamed by some service provider for her child’s schizophrenia. This blame hurts patients as well as family caregivers who are adjusting to life altering circumstances that they never expected. Since many people with severe mental illnesses rely on their parents it’s not helpful when these parents, who often supply key supports, are pathologized and discounted.

2. Lack of psycho-education for clients

At family support groups, it is clear that a central problem is that too many people do not stay on anti-psychotic medications that they need. Families dealing with mental illnesses in British Columbia have access to two closely related programs, the US National Alliance on Mental Illness’s Family to Family course and the Canadian developed Strengthening Families Together. These programs provide a solid understanding of the symptoms of serious mental illnesses and the medical and psychosocial treatments that can lead to the best results. However, families complain that their family members lack this kind of basic information. Most clients, unless they are in one of the too few Early Psychosis Intervention programs (EPI), do not even learn about the common cognitive losses that may be making their daily lives much more difficult to manage nor do they learn about simple adaptation strategies.

It is also only through EPI that clients in British Columbia have a chance to participate in professionally facilitated psycho-education programs. My daughter and her friends with schizophrenia received this kind of sustained, weekly education in the now long defunct University of British Columbia Schizophrenia Day Program. Although their illnesses have presented typical challenges, this group was educated about their illnesses, learned to accept them and developed important skills to help manage them. This group takes medications that they understand they need.

The current model for psycho-education in Vancouver, where I live, rests on the idea that each encounter with the mental health system is an opportunity for clients to become educated about their illnesses. The reality is that our underfunded mental health system has seen caseloads increase for service providers and there is very little education supplied.

The lack of appropriate psycho-education for clients, like the lack of public mental illness literacy campaigns, is also the result of competing belief systems. Within too many mental health systems, it has become contentious to consider schizophrenia to be a medical condition or to even agree that it exists. When psychiatrist Dr. Elinor McCance-Katz worked as an advisor to the influential US Substance Abuse and Mental Health Services Administration (SAMHSA), she quit and wrote an expose about this federal organization leading mental health care in the US. She noted there was “perceptible hostility” towards the use of psychiatric medications and, instead, support for the idea that psychosis is just a “’different way of thinking.’” When Dr. McCance-Katz went on to briefly lead SAMHSA, it finally incorporated medically based perspectives. These are disappearing now that SAMHSA is led by a psychologist who has long opposed access to involuntary treatment.

3. Increased exposure to anti-psychiatry/anti-medication beliefs

While not receiving the kind of education about their illnesses that is needed, people with schizophrenia are increasingly exposed to the beliefs of the alternative/psychiatric survivor movement. This exposure is not just through Google searches, but through the expanding presence and influence of people with similar perspectives within the mental health system. Often this exposure comes through the peer movement.

I believe in the usefulness of peer support workers both for clients who need a vast range of supports, but also for the workers who have a great chance to rebuild their resumes. However, we need to acknowledge the serious problems with the powerful international peer movement. Their views certainly dominated the choices that the Mental Health Commission of Canada (MHCC) made in creating its guidelines for educating and supervising peer workers. There is no requirement or even a recommendation for these workers to learn anything about the actual mental illnesses that many of their clients have.

The consequences of lack of appropriate education and guidance have been very evident in Vancouver’s mental health services. For instance, although the heavily promoted peer led Hearing Voices Network (HVN) does offer important support and some coping strategies, it also includes larger messages that undermine the belief in the value of medical approaches to severe mental illnesses. This is a link to the study group in Vancouver connected to HVN; too often, this group focuses on leaders in the anti-psychiatry movement. In this instance, the group was exploring the beliefs of Will Hall, a frequent writer for Mad in America. He is especially known for his book encouraging people to “safely” get off their anti-psychotic medications.

British Columbia recently released new guidelines for the training of peer support workers. Unfortunately, these guidelines don’t require, recommend, or even suggest that the training provide any information about severe mental illnesses. Health authorities are advertising many new positions for these workers. My daughter appreciated assistance she has received from peer workers, but she has let us know about troubling interactions. At one point, the peer leading a Wellness Recovery Action Plan (WRAP) program explained to the group she was leading that they were all there because they had “parents who were never there for them.” My daughter is aware of the problems with messages like this and was aware of them when she described some in the group as noticeably ill; creating greater distrust of families among this population is not in their best interest. These potentially harmful ideas are understandable when peers are not trained about severe mental illnesses, but are just trained about the value of sharing their stories and views.

4. Growing influence of disability rights organizations

Disability rights organizations and their allies in academia have made important gains for people with particular disabilities. At the same time, psychiatric survivors have succeeded in supplying the voice of people with severe mental illnesses within these organizations. These are people who usually have had very negative experiences with psychiatry and with medications that they did not need for their mental health problems. As they have been taught, they generalize from their own experiences.

Disability rights organizations would better serve the needs of people they are assumed to represent if they explained the incapacity that is frequently part of psychosis. I have not yet seen any disability rights organization acknowledge the existence of anosognosia, the brain based inability of many people in psychosis to understand that they are ill. They also do not acknowledge what happens to psychotic people when the legal barriers to access treatment are too onerous. Without appropriate treatment people are left trapped in psychosis. We need disability rights groups and public mental illness literacy campaigns to help the public understand how people with severe untreated psychotic disorders end up homeless, victimized, addicted, and incarcerated.

There is value in the motto of the disability rights movement which is “Nothing about us without us.” At the same time, people like my daughter who live with significant cognitive losses and other residual symptoms of severe mental illnesses often rely on family caregivers. This population is not actually represented if their family caregivers are not also represented in both policymaking situations and in the circle of care communicating about services for their family member.

My family is fortunate that for a very long time we have had access to clinicians who include us. These cooperative relationships have allowed my daughter, whose illness is severe, to have experienced years of stability. However, by constantly attending a wide range of family support groups, I have learned how rare this cooperation is.

Families have tried to get more programs training service providers, including those in psychiatry, to include curriculum on working cooperatively with family caregivers. Although there is little evidence of the success of these efforts, psychiatrists training at the University of Toronto, are now required to take a course on “Centering Madness.” The Mental Health Commission of Canada has chosen to celebrate “Centering Madness” as a champion in the fight against structural stigma in the health care system. The creators of the course describe it as building on the field of “Mad Studies.” “Mad Studies,” developed by the late Bonnie Burstow, has had an enormous impact on disability studies; Burstow fought to abolish the field of psychiatry.

Disability rights organizations have had a lot of success in their efforts to abolish access to involuntary psychiatric treatment. Access to involuntary treatment has become almost impossible in Ontario. Families in Ontario increasingly try to publicize the disastrous consequences for their ill family members who, because of the over involvement of lawyers, are not getting access to necessary treatment. Some psychiatrists are also speaking out; Ontario psychiatrist Dr. David Dawson has written about the overwhelming legal obstacles psychiatrists face in trying to provide treatment to patients with untreated psychosis. He explains how psychiatrists do not have time to go through the daunting and often insurmountable legal procedures involved in trying to get inpatient treatment for patients who need it.

5. The Downside of the Recovery Model

Some core ideas in the now widespread recovery model in delivering mental health services are very appealing. The beliefs that mental health systems should foster hope, treat patients with greater respect, and help people be all they can be are admirable. In my experience, good clinicians already were guided by these basic values in their practice.

While the recovery model is still being celebrated as a breakthrough in the delivery of mental health services, there seems to be no interest in tracking the downside of its assumptions. I first noticed these downsides when Vancouver Coastal Health adopted this model and its contracted agencies, like Gastown Vocational Services (GVS), had to change their policies. My daughter was receiving valuable assistance through their supported volunteer work program. Once the recovery model was adopted, access to this service stopped. The new policy dictated that once people turned 30, they should be streamed into supported employment programs which could lead them to competitive employment. Recognition that some people’s illnesses make competitive employment impossible disappeared.

The recovery model, which did not originate from the medical community, minimizes the severity of some mental illnesses. The guiding philosophy is that if people are supplied the right services, they can ‘recover’ if they choose to do so. This belief system provides a dangerous lens through which to view the vast numbers of homeless people throughout the US and Canada who are struggling with severe, untreated mental illnesses.

Increasingly, more parts of the mental health system are operating from the belief that people are always capable of choice and are, therefore, responsible for bad choices. Families in support groups describe how their family members’ mental health service providers seem willing to simply give up on keeping someone who needs but doesn’t want to stay in treatment; this is done under the belief that they are respecting the person’s choice. Families also report that, even in inpatient settings, their family member’s difficult behavior is being seen as willfully chosen. In locations where people are allowed to refuse medically based treatments, families fear that it has just become more convenient for hospitals to discharge untreated people who are difficult to manage or, even worse, they are turning them over to the criminal justice system.

The recovery model downplays the vital role of medical treatment in mental illness in favor of services from others. Meanwhile, families are concerned about the enormous difficulty in accessing psychiatric care; even though journalists document the shortage of psychiatrists, there seems to be little political will to fix the problem. Similarly, there is a shortage of psychiatric beds. In British Columbia, the BC Psychiatric Association partnered with the BC Schizophrenia Society to describe the problem.

What Can Be Done to Address These Problems?

Improve mental illness literacy campaigns.
Offering basic factual information about disorders like schizophrenia can help people search for appropriate treatment much earlier. It can also help the public respond with more skill and compassion when people around them develop these illnesses.

Provide professionally facilitated psycho-education for clients.
This education provides a foundation for people to make the best possible adjustment to living with a severe mental illness.

Eliminate the dissemination of anti-psychiatry messages in the delivery of publicly funded mental health services.
Lots of people believe in a variety of alternative health care philosophies, like, for instance, the idea that vaccines don’t work. The public healthcare system doesn’t appease these people by publicizing these beliefs or subsidizing the alternative practices they prefer.

Improve the training of all credentialed mental health clinicians.
All clinicians need to have science-based education about illnesses like schizophrenia. As well, they need training in working cooperatively with family caregivers.

Support the laws that protect people with severe mental illnesses and work to reform legislation that leaves too many people left in untreated psychosis.
Vigorous lobbying by psychiatric survivor groups and their allies within the disability rights movement and the legal profession worked to create laws blocking access to involuntary treatment. Concerted efforts are needed to publicize the catastrophic impact of leaving people in untreated psychosis.

Putting My Experiences into Perspective
As we try to plan for the future for our very disabled daughter, I need to understand the larger social trends that impact that future and how we might have a positive impact on the problems these trends are creating. The EUFAMI international survey of family caregivers for people with mental illnesses found that parents fear for the future of their adult children when they are no longer able to supply the enormous amount of help that is needed.

I share these fears.

This article first appeared on medium.com

Susan Inman

HAPPY NEW YEAR by Dede Ranahan

The new year lies before me

like a spotless track of snow.

I must be careful how I tread on it,

for every mark will show.

(I altered a little. Original author unknown.)

May 2022 be a good year for all of us.

Photo credit: JR/Flickr

LETTER TO CA ASSEMBLY ABOUT LPS REFORM by Dede Ranahan

December 14, 2021

My written comment to the California Assembly Health and Judiciary Committee about LPS (involuntary commitment) reform:

As the mother of a son who fought hard to live with his schizo-affective disorder, I have over 25 years experience with the California mental health system. I don't agree with your conclusions that LPS gives counties adequate tools to meet the needs of SMI or that changes to the act would endanger civil liberties.

I do agree that LPS needs to ensure adequate follow up care. I.e. My son was involuntarily committed to Kaiser hospital in July 2014. Due to the lack of beds in Sacramento County, he was transferred to Dignity Health in Yolo County without our family knowledge even though he had designated me as his representative on his advanced care directive. His records were not transferred from Kaiser to Dignity Health. I was not able to speak with my son's doctor, they asked for my discharge plan even though I wasn't advised of his health status, and they called subsequently to announce that he'd died. The nightmare continued as I fought to get an independent autopsy and toxicology report.

Obviously there's not space here to divulge 25 years of terrible LPS history in my family. I've written two award winning books about this: Sooner Than Tomorrow (memoir) and Tomorrow Was Yesterday (65 stories from California mothers and mothers from 28 other states). Please read their stories if you really want to know what living under LPS law is like.

Tomorrow Was Yesterday includes a 15-point plan to address serious mental illness developed by activists from across the country. Our top 5 recommendations are: 1) Reclassify SMI from a behavioral to a physical medical condition — looking at SMI through a medical rather than behavioral lens would change the way insurance would have to operate, the way we incarcerate SMI, the way we view SMI homeless; 2) Reform HIPAA; 3) Repeal the IMD Exclusion; 4) Provide a full continuum of care; 5) Decriminalize SMI.

Involuntary treatment is not to impinge on civil liberties. It's to make sure that people receive their right to timely, quality treatment. It's to raise the bar for services rather than meeting only minimum standards. Let's stop fighting over "Are you a danger to yourself or others?" We don't do this for dementia/Parkinson's patients. Let's get people into treatment sooner.

Let's get out of the ideological weeds, stop the bureaucratic quibbling, and look at the big picture of what is needed. Bottom line: I'd demolish LPS as it is written and use available funding (reallocated MHSA funds, Medicaid, and reassigned funding given to unaccountable and unreliable nonprofits)to create a new system that has responsibility, accountability, and independent financial oversight (not MHSA oversight).

Thank you. Dede Ranahan

Just made my year-end donation to No One Cares About Crazy People. Please consider doing likewise to help bring this film to fruition. No One Cares documents the horrifying, inhumane state of our "mental illness system." It exposes human rights violations and asks for change. To donate, click on the link to the film homepage below.

No One Cares Film

Image from No One Cares Film

REMEMBERING ROSE KING by Dede Ranahan

Last night I lost a friend. A friend I never thought I'd lose. Someone as full of passion and fight and purpose is never supposed to leave. Teresa Pasquini called me this afternoon to let me know that Rose King passed away while undergoing emergency surgery. This is not supposed to happen. By my best estimate, Rose was around 82. The last time I saw her was January 16, 2014. We met for lunch and I wrote about our meeting in Sooner Than Tomorrow.

Rose was a giant (too small a word) in California mental health politics. She co-authored the 2004 Proposition 63 Act to fund mental health services for the seriously mentally ill. Or so she thought. Disappointed in its implementation, she turned around to become one of its fiercest critics saying that it needed more oversight, that it was losing focus, and it was being diluted from its original purpose. This was not kosher. Political interests began to take umbrage at Rose and her challenging the system. Again.

Rose lost her husband when she was a young mother of three children. He killed himself in their home. Later her son would take his life at approximately the same age that his father had taken his. In her 70s, Rose supported two grandsons stricken with the family illness. Then a grandson, well and thriving, died by electric shock while working on a construction job.

How much can one person take?

From Sooner Than Tomorrow:

January 16, 2014: Rose.

My friend Rose and I are meeting for lunch. She's 75 and such a trooper. She's still fighting the exhaustive fight for a competent mental health system. She's one of three co-authors of California's Prop 63, the Mental Health Services Act.

Disappointed in its implementation, Rose lobbied for an audit by the California State Auditor. The auditor reported that it wasn't possible to determine whether Prop 63 programs had been of benefit to those served, had improved community mental health delivery, or whether programs had complied with the requirements of the law.

In addition to the appalling number of untreated mentally ill, Rose, based on her continuing research, believes eighty percent of those in the system are not receiving adequate care. "Parity, she says, "we still don't have parity for physical and mental health."

Rose's husband and son always come up in our conversations. They both ended their struggle with mental illness by suicide. Two grandsons -- one is living with her -- also deal with the illness. We agree. If all the parents and grandparents housing their mentally ill children and grandchildren were to dump them on the street, there'd be major socio-economic fallout. Our health and welfare programs would be more overwhelmed than then already are. These family members, who've given up on the mental health system, are a hidden, unappreciated population.

We change the subject. We talk about Rose's 75th birthday party. We talk about my mother, my children, and grandchildren. We try to talk about everyday things like average folks. We hug goodbye and remind each other, "Take care of yourself."

Goodbye dear Rose. Take care of yourself, finally, and rest in peace. I love you, forever. Dede.

AT THANKSGIVING by Dede Ranahan

At Thanksgiving and all the year, I'm thankful for so many medical brain disorder advocates. With special appreciation to: Leslie Carpenter, Jerri Clark. Lisa Dailey, Kathy Day, Deborah Fabos, Mimi Feldman, Gail Freedman, Sheila Ganz, Jeanne Gore, Catherine Ripee-Hansen, Janet Hays, Teresa Pasquini, Laura Pogliano, Ron Powers, Linda Rippe-Privatte, the moms/caregivers in Tomorrow Was Yesterday, and all the Facebook activists. You are my real life heroes.

Thanksgiving blessings everyone!

https://vimeo.com/644412067

Many thanks to film producer and mental illness activist, Gail Freedman, for her dogged pursuit to tell the truth about SMI in our country. Here's a clip (link above) of her upcoming documentary, No One Cares About Crazy People. Some of the moms/caregivers from Tomorrow Was Yesterday are included in this film. Please watch and share.

Tax deductible donations for No One Cares About Crazy People:

To donate by check, please make payable to:
Sustainable Markets Foundation
ATT: No One Cares
45 West 36th St.
6th Floor
New York, NY 10018-7635

Thanks for your support.

Photo Credit: Hazel Payne/Flickr

From the oldest

LETTER TO SENATOR WYDEN AND THE SENATE COMMITTEE ON FINANCE by Dede Ranahan

November 1, 2021

Dear Senator Ron Wyden, and other members of the Committee on Finance:

This is in response to your request for input from stakeholders to help you better understand how Congress can address behavioral health care challenges.

First, thank you, Senator Wyden, for keeping at it. I’m sure you don’t remember, but back in the late 1990s you intervened for my son who was delusional and psychotic in Oregon. He died in a California hospital psych ward in 2014. He never did receive the help he needed for schizo-affective disorder. In the interim, I became a mother bear and mental illness activist. I’ve written two award-winning books, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life (Nautilus Book Awards Gold Medal Winner, Memoir, 2019) and Tomorrow Was Yesterday, Explosive First-Person Indictments of the US Mental Health System — Mothers Across the Nation Tell It Like It Is (Nautilus Book Awards Silver Medal Winner, Social Change, Social Justice 2020). The second book includes stories from 65 mothers from 28 states, and a fifteen-point plan to address serious mental illness (SMI - schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, etc.). The plan was developed in 2019 by advocates/activists from across the country.

In January 2021, 150 Tomorrow Was Yesterday readers, from every state in the nation, volunteered to send a copy of the book to the White House (Joe Biden, Jill Biden, Kamala Harris, Xavier Becerra, and individual legislators) thinking 150 copies of the same book from every state might get someone’s attention. Five months later, we all began receiving form letters from the White House thanking us for our “gifts” and for welcoming Joe Biden to the Presidency. No mention of the topic. No reference to the books. It was hurtful and insulting.

The 15-part plan was prioritized by the participants. The number 1 priority on their list is to "Reclassify Serious Mental Illness (SMI) from a Behavioral Condition to what it is, a Neurological Medical Condition." Until we look at SMI through a biological/physical lens, the significant changes we users of the system need will not happen.

I’m not trying to specifically address the questions you’ve posed in your letter. The SMI Plan cuts through all of them. More significantly, it raises issues not included in your list. The suffering in the SMI community (11-13 million diagnosed individuals plus their families) is intense. We’re screaming to the heavens for help. So far, no one seems to be listening.

Summary from Tomorrow Was Yesterday:
“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 organization vs. unfunded grassroots advocacy efforts. I watched my son Pat die because the system is tied up in bureaucratic and philosophical knots.”

I would be happy to send you a copy of Tomorrow Was Yesterday which includes the 15-point plan to address SMI. My hope is that you, and others on the committee, might read our stories, take the plan seriously, and pursue some of its recommendations. It’s a beginning. It’s from the people in the trenches -- the sufferers, the families, the folks the system is supposed to help.

Thank you for reaching out. Let me know if/where I should send a copy of Tomorrow Was Yesterday.

Sincerely,
Dede Ranahan

Available on Amazon

IN MEMORY OF SYLVIA CHARTERS by Dede Ranahan

Sylvia Charters is one of the mom/authors in Tomorrow Was Yesterday - Explosive First-Person Indictments of the US Mental Health System - Mothers Across the Nation Tell It Like It Is. Sylvia passed away from COVID this past weekend. She and her husband Bill celebrated their 49th wedding anniversary in July. Bill is in the hospital with Covid and hopes to return home soon.

Sylvia was the mother of two sons. Her son Jason had bipolar disorder with psychosis. He passed away in 2020 at age 40 with cardiomyopathy. Her youngest son is undiagnosed and living, homeless, on the streets of Phoenix and is addicted to street drugs. He has symptoms of bipolar disorder.

I’m reposting Sylvia’s story, from the book, in her honor. She was a fierce Mama Warrior and medical brain disorder advocate. My love and condolences to her family and friends. My best wishes to Bill for his full recovery.

THERE’S NO HELP IN THE USA

by Sylvia Charters

I will never forget the night I woke up at midnight to find my 33-year-old son crawling on the floor. As I walked toward him, he yelled, “Get down! They have guns. We’re surrounded.”

I realized something was very wrong with my son. I got down beside him, speaking gently. I asked him, “Who has guns?”

He said, “The FBI. The CIA.”

There was no one but the two of us. He continued, “We’re surrounded and in danger. They can hear through the walls.”

I told him, “Stay here. I’m going for Dad.”

I crawled down the hallway into my bedroom, woke my husband and told him, “Something is terribly wrong with Jason. Call 911. I think our son’s had a mental breakdown.”

The sheriff and ambulance arrived and pretty much confirmed what I had said to my husband. That night our lives changed forever. My son was admitted to the hospital and we were told he would be transferred to the Phoenix County Psychiatric Hospital where he would be treated and evaluated for severe mental illness.

Our hearts and minds were numb, crushed. We, as a family, became broken—just like our son. Our dreams and hopes were shattered. We didn’t know this was the beginning of a horrific journey that we, as a family, would travel alone with no road map.

My son was diagnosed with Bipolar 1 (psychosis). He was hospitalized for 30 days (his longest stay). Thus began numerous hospitalizations. We watched over him 24/7. He was so different. We’d lost the son we raised and learned that he’d never be the happy-go-lucky, funny, social, person we knew. The meds kept him disoriented, sleepy, and lifeless.

We began to read, research, and ask a lot of questions. We enrolled in NAMI’s Family-to-Family 12-week class. Slowly we learned the devastating truth. No one had answers. We lived one day at a time. The revolving door, cycle after cycle, merry-go-round circus began—treatment, hospitalization, overdose, under-dose, multiple meds, horrific episodes of anger, violence, running away, arrests, jail, court-ordered treatment, probation, involuntarily and voluntary hospitalizations, suicidal episodes, nine petitions. “Gravely disabled.” “Seriously mentally ill.” Words that held stigma, shame, and loss, brought devastation.

It became clear our son needed 24/7 care. We pleaded, searched, fought, and finally obtained transitional housing—only after Jason ran away, stopped his meds, became psychotic, and a danger to himself and others. Multiple times he was on court-ordered treatment.

I wrote letters to the governor, to President Obama, to his clinic, psychiatrists, and caseworkers, holding them accountable for my son and our family if tragedy occurred due to lack of help. Shortly thereafter, my son was placed in transitional housing with 16-hour onsite staff responsible for ensuring that meds were taken. I visited Jason daily, made him breakfast, watched him take his meds, drove him to every doctor appointment, trusting no one (health professionals, case mangers, had all let us down).

I took early retirement and became my son’s caregiver. My son started to improve. The daily routine began to work. He didn’t think he was sick (anosognosia) but he began to trust us. It took three years. Jason developed diabetes, high blood pressure, and gained a lot of weight, but he continued to obey us and believed us when we told him, “We will keep you safe and off the streets. However, you must continue taking your meds.”

We were making progress. Then I had to file a restraining order. Jason had pushed me out of the car and threatened me. I knew, in his psychotic state, he could kill me. After homelessness, more hospitalizations, arrests, and court-ordered treatment, the cycle took a turn for the better.

With treatment, the right meds and constant family involvement in his care, we saw improvement. We wanted Jason to live independently, however we knew he wouldn’t be able to take his meds without supervision. And without his meds, he’d become psychotic and dangerous, not by his nature, but because of his illness. We learned to separate the ugliness of his illness from the son we knew and loved. We made the decision to bring him home—again. We knew that no one could love or care for him better than his family. Our family bonded together, demonstrating to him that we would not desert him. Tough love doesn’t work on a broken mind.

At age 67, our retirement dreams were no longer our priority. Our son was our priority. We moved from Arizona to Florida because Jason’s always loved the beach. We left the care and support we had behind. Now, we pray that Florida will help our son but, truth be told, there’s no help in the USA, especially not in Florida (retirement state).

Sylvia and Bill Charters

Sylvia and Bill Charters

From the oldest