Crisis in Mental Illness

Photo by an ESB professional- Shutterstock

  Families experiencing a crisis with their loved ones often reach out for help from other families that have been through a similar experience.  Guiding a family with a loved one with serious mental illness with active psychosis is scary, especially if the psychotic break is sudden.  At the Association for the Chronically Mentally Ill (ACMI), we feel compelled to inform families that they may be in danger. While most people with mental illness are victims of crime, untreated or undertreated, they can also pose a danger to themselves and others. Stories like that of Senator Creigh Deeds, who was attacked by his son after a short stay in an emergency room because there were no psychiatric facilities that could admit him at the time are not infrequent.  The facility released him to Sen Deeds’ care, and the next morning his son attacked him before killing himself. There have been many similar stories across the United States.  When reading stories as described below, it prompts one to think about how we got to this point. Below is an account of what Joseph Bowers was experiencing during his psychotic period; fortunately, his grandmother was not harmed. When will our behavioral health system realize that the lack of psychiatric beds and inadequate short term inpatient treatment does not help but contributes to this issue? We must advocate for appropriate treatment and prevent needless tragedies.

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Guest Blog – Saved from Committing a Psychotic

Murder

Original Blog Schizophrenia | Mind You (wordpress.com)

December 18, 2020Schizophrenia 

By Joseph Bowers

There was no one in this world I loved more than grandma when in my right mind so why did I try to kill her? By the time I turned 17 in 1964, I had become totally absorbed by psychotic delusional fantasies. I was living with my grandmother and she and my grandfather, who had died about ten months earlier, had raised me from the age of two. Also living with us was my Uncle Fred who was not home much.

One evening shortly after my birthday, my brain became convinced that the devil had replaced my grandmother’s soul from her body with his own. He was doing this waiting for an opportunity to kill me. I don’t remember exactly who I believed I was: God or Jesus, a critical figure for good in the ongoing battle of good versus evil in any case.

Alarmed as I was, my brain saw this as a great opportunity. I could kill my grandmother’s body whereupon the devil’s soul would be forced to vacate. At that point, my spirit friends would capture him and imprison him eternally. Without his leadership, the forces of evil would crumble and the battle of good versus evil would be over once and for all with good triumphant. I probably had a plan for restoring my grandmother’s body and reuniting body and soul. We would all live in peace happily ever after.

Just after grandma went upstairs to bed that night, I took a single shot 16-gauge shotgun out of a closet, loaded it and started up the stairs toward her bedroom. As I reached the top of the stairs, looking in through her open bedroom door, I saw her kneeling by her bed praying.

Confused, I hurried on down the hallway out of her line of sight. What was the devil doing kneeling in prayer? Surely, he had somehow become aware of what I was up to and was trying to fool me into thinking this was just my dear grandmother after all.

Taking a deep breath. I went back down the hallway and entered her room. As she turned to me, I pressed the barrel of the shotgun against her chest and pulled the hammer back cocking the gun. At this point she reached out to me touching my arm and pleaded, “Joe don’t! You’ve never been mean to me!”

Time seemed to stand still as I wrestled with my dilemma. Do I pull the trigger or not?

I pointed the gun to the floor. With my thumb on the hammer, I pulled the trigger letting the hammer down gently harmlessly. Breaking the breach, I unloaded the gun, and we went downstairs to wait for Uncle Fred to come home.

Nearly sixty years later, I still wonder what saved my grandmother that night. Was It the uncertainty caused by finding her in prayer? Did her reaching out and beseeching me somewhat reestablish our relationship and make it harder to believe her to be the devil? Did I have one of those brief lucid moments that sometimes come in the midst of psychosis? I just don’t know, but I’m thankful whatever it was.

That night they took me to Middletown State Mental Hospital in lower New York State where I would stay for more than two months being treated for what they diagnosed as paranoid schizophrenia.

At the hospital I received the best science-based treatment available in 1964. My family never got a bill. The state of New York paid for it. I was able to leave the hospital after about two and a half months reasonably stable. As a teenage boy from rural upstate New York and a family of limited financial resources, I didn’t realize how lucky I was to get this kind of treatment.

There would be more than twenty years of struggling with recuring psychotic episodes. There would be more hospitalizations and a couple arrests.

In time I was put on a medication that proved very effective without serious side effects, I’ve developed a solid support system of professionals, family and friends and I have learned effective coping skills. Working with a professional, my wife and I learned signs of impending illness which would alert us to take preventative action. I haven’t had a serious episode in more than thirty years now and have overall lived a reasonably normal and successful life.

Never on any sort of disability insurance, I have held down many jobs. For two years I fought forest fires on a hotshot crew for the U.S.D.A. Forest Service, worked as a roughneck on oil rigs and retired from twenty-nine years helping produce low-cost electricity at a large power plant.  I’ve earned a B.S. degree from a major university and had a successful marriage. My wife and I have three grown children all healthy, doing well and contributing to society.

I am truly one of the lucky ones.

With the changes I’ve seen in mental health care in my lifetime, I can just imagine how things might go in this day and age. A teenage boy from the country and poorer parents developing serious mental illness would face a different scenario than what befell me in 1964.

If he got a hospital bed at all, he would almost certainly be released way too soon and get little of the needed support on the outside. It’s not hard to imagine a life of homelessness on the streets in and out of jails and prisons. This happens all too often.

The big paradox for me is that even as our ability to treat serious mental illness has increased a great deal in my lifetime, the likelihood that people will get the treatment that is available is much less.

Joseph Bowers now lives in Colorado

 

 

 

 
People with SMI on the streetsImage by Geesling photography -SMI people on the streets of Phoenix

Linda Mimms initially shared this article via social media. This article is a brilliant take by Dr. Rob Laitman on what it costs our society monetarily and, more importantly, our humanity. Failure to appropriately treat people with mental illness disorders is caused by not meeting people’s treatable medical brain disorders, in addition to multiple other factors. We have been violating the CIVIL RIGHTS of this neglected group of sick citizens who have needed treatment for decades with disastrous results. The family and community burden is one of these many disastrous outcomes. These members’ lives with serious mental illnesses are often 25 years shorter than the rest of the population. Jails and prisons are treating (though inadequately) our sickest society’s members using our criminal system as an alternative to a therapeutic environment.  They have become a de facto significant psychiatric provider in this punitive setting. We continue to treat the behaviors of mental illness as criminal acts.

Charles Goldstein, MD

  “The more I look into the horror of our healthcare system, the more outraged I become. Let me give you some perspective as a nephrologist (kidney specialist). End-Stage Renal Disease (ESRD) is the only medical diagnosis that automatically qualifies you for Medicare. Currently, there are 468,000 ESRD patients in the USA. The average expenditure per patient per year is $150,000. The total cost is 70 billion dollars. Employment in ESRD patients is 20% employed to age 55 and less than 3 % thereafter. Now let us look at the psychotic spectrum disorders representing 2% of the population (1 % schizophrenia spectrum and 1 % bipolar with psychosis). This percentage represents 6,620,000 individuals. If we were to support their medical needs fairly and comparably, we would be willing to devote 1 trillion dollars just for their care.

   So what do we spend? When it comes to direct patient care for schizophrenia, the most recent estimate from a 2016 study was 37.4 billion. If you were to assume that the cost of taking care of someone with bipolar with psychosis was similar (actually, we know it is substantially less), the cost would be about 75 billion. Essentially we are only spending less than 1/10 for our patients with psychosis medical care than we have already decided would be appropriate in the ESRD population.

   What is even more outrageous is this lack of support leads to tremendous non-direct healthcare costs, including law enforcement, homeless shelters, and productivity losses of both the patients and the caregivers. Specifically, for schizophrenia, unemployment cost was 59.2 billion, and caregiving was 52.9 billion.

   What drives this tremendous disparity in resource allocation starts with the nihilistic belief that psychotic spectrum disorders are not treatable. Why should we devote resources to a hopeless population? Another component is that 50 % of this population has anosognosia, and therefore does not feel that they need treatment. Given the current status of the laws that “protect” patient’s rights, such as HIPAA and the underutilized and underpowered AOT laws, it is impossible to engage the patient even to start an effective treatment. Where we are right now is less than 50% of all patients with psychosis receive any care. The biggest psychiatric providers are the LA jail, Cook County jail, and Rikers Island jail. It is estimated that 20-40% of the prison population has a psychotic illness. The ever-growing homeless population also has been found to have a similar % of serious mental illness. At present, in those receiving treatment, only 14 % are in meaningful recovery.

   The question is, what are we doing wrong, or is this just a hopeless population? What does the evidence say? As it turns out, there is increasing evidence that early identification of prodromal high-risk individuals can be identified, and by working on their processing speed (REM) the development of the full-fledged psychotic disorder can be aborted. Even after the development of psychosis, early treatment with the most effective treatment and wrap-around social services can change the trajectory of the illness. This is being demonstrated impressively with the Recovery After Initial Schizophrenia Episode (RAISE) study.  Remarkably,  the VA has shown that if patients are switched to clozapine, there is a savings of over $ 20,000 accrue per patient-year initially, and as monitoring becomes less, that saving grows. Switching to clozapine has also led to the best survival, the lowest hospitalization rate, and the best quality of life.  In my hands, I have demonstrated what is possible with optimal clozapine care. 75/103 of my patients treated over six months are in meaningful recovery. I define meaningful recovery as being in school, work, or a PROS program training to work. Hospitalization and, therefore, the cost of care has been minimized. In over 330 patient-years of care, there have been only 1.3 years of hospitalization. This translates out on average 1-2 days/year in the hospital. Medical compliance has been over 90% in those that have been successfully engaged, and overall over 98% of the population considers themselves improved with my care.

   So we need to let our legislators know that they are not throwing good money after bad money. We need to have the resources to change the barriers to care. Specifically, we need a national uniform rational AOT program that gives the provider the ability to treat the patient where the need is demonstrated. Serious mental illness is a team sport, and communication has to be seamless, so we need to reform HIPAA to assure that caregivers are involved in every step of the way. We need to invest in improving access. Taking care of these patients takes a lot of work, and the reimbursement is dismal for the provider. So I return to the ESRD program. For every dialysis patient, the provider is paid a fixed amount for dialysis management. Clozapine is a lot of work and is superior to all other antipsychotics in every setting, and yet only 2% of the population is so treated. We need to invest in these patients and provide a treatment stipend for management. A reasonable fee schedule would be initially $1000/mo for the first six months, $750/mo for the next six months, and then $500/mo after one year. If the patient is hospitalized, the amount should be reduced proportionally to the time spent in the hospital. This is how the ESRD program works, and this carrot has led to superior clinical care. In our population, this small carrot could be a game-changer not only in the quality of care but the end of being a tremendous cost saver. With the cost-saving, we would then be able to devote more resources to all of the appropriate supports.

   In summary, we need to convince the powers that be to devote appropriate resources. We need bravery to insist on rational laws that help engage our patients and families in therapeutic relationships. Our medical professionals need to be re-educated in what is possible and learn the correct approach to treatment. We need to pay adequately for this arduous but rewarding work. If we do this, we will be able to provide an optimal clozapine based regimen with full wrap-around psycho-social services. With this, we will not only end suffering, but we will see a majority of this population lead lives of purpose and meaning.” Robert S. Laitman, MD

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Arizona State Hospital

 

 

 

 

 

 

 

The Association of the Chronically Mentally Ill is focused on the sickest group within the SMI population. This group is non-compliant with treatment and often afflicted with anosognosia or the lack of ability to perceive the realities of one’s own condition. There are a number of systemic issues within our public systems that impact this target group. One such issue is the 55 bed limit at the Arizona State Hospital, which was created to incentivize the state to create community-based programs. Long past the usefulness of that policy, Josh Mozell’s November 30th, 2020 article in the Capitol Times help to explain some of the fallout of this policy, and the reasons the 55-bed limit should be eliminated.

   Solving the problems of our broken mental health system often seems so overwhelming that work does not begin. However, there are narrow solutions with broad implications that can be implemented. One such solution is ending Arizona’s long-standing bed limitation placed upon our state hospital.

   It may surprise many to learn that Arizona still has an operational mental asylum. Opened in 1887, it is now known as the Arizona State Hospital. The purpose of the State Hospital is and has always been to provide care for the most mentally ill in our community. For many in that group, months, if not years, of long-term programming is necessary for real recovery. That being the case, the State Hospital becomes the only place in Arizona where they have a chance for meaningful improvement.

   However, the hospital is nearly inaccessible for Maricopa County’s residents due to an arbitrary 55-bed limitation. To provide perspective, health policy experts estimate that a community needs between 40 and 60 beds per 100,000 to meet the demand for state hospital beds. In Maricopa County, however, for those who are civilly committed, we have one bed per 100,000.

   Why? In 1981, a path-breaking class-action lawsuit, Arnold v Sarn, was filed on behalf of Maricopa County’s mentally ill. The litigation lasted over 30 years, finally settling in 2014. During that time, the case revolutionized Arizona’s mental health system. But in 1995, the parties entered into a plan to resolve the litigation. In that stipulation, the parties agreed there would be a cap of 55-beds at the Arizona State Hospital for civilly committed patients from Maricopa County. Due to this limitation, the only pathway to gaining admission is to fail repeatedly, in spectacular fashion, and do it for years.

   The failure looks like this: Because this group of chronically mentally ill does not receive the long-term treatment needed, they transition from one crisis to the next, experiencing more serious decompensation. This results in a constant recycling through the various public systems at an enormous cost to the taxpayers. Year by year the person is increasingly overcome by the disease. There are persistent police and fire interactions, multiple visits to emergency rooms, long medical hospital stays, arrests for petty crimes, and, unfortunately too often for serious crimes. Then there is the involvement of the judicial system, homeless shelters, and the penal system. Rinse and repeat – the cycle continues for years. For this group of people, the system is not just broken, but inhumane.

   The bed limitation also has many downstream effects. For instance, those who need access to Arizona State Hospital do not disappear simply because there is not an available bed. Instead, they consume scarce mental health resources, which otherwise could be provided to others in need. The most serious manifestation is in our civil commitment system. To be hospitalized through civil commitment, a patient receives a bed at Valleywise Health, the one hospital system licensed to carry out the process in Maricopa County. The average length of stay during the process is 22 days, and, during those 22 days, the patient receives very good psychiatric care. But, we have just 343 beds in Maricopa County, which is far less than what is needed to serve the population. Due to that bed shortage, our system is already limited in its ability to treat those who need help.

  The Arizona State Hospital 55-bed limit pours gasoline on a fire. To keep the patient and the public safe, Valleywise is often forced to keep the patient for months until the patient stabilizes, without the infrastructure for true long-term treatment. Therefore, despite maximizing the stabilization possible at a short-term hospital, it is not enough. The patient is often back at Valleywise within weeks after release. This routine can continue for years until the patient finally fails enough for State Hospital consideration.

   Commonly, the amount of failing will total 1,000 days or more at Valleywise – in addition to visits to the ER, jail, crisis centers, etc. Therefore, on just one patient who would be most appropriately treated at Arizona State Hospital, 45 patients could receive a 22-day hospital stay at Valleywise. Consequently, the bed shortage is made worse, individuals do not receive care, and scarce state resources are exhausted. This extends the system to the point of breaking, which cannot be sustained.

  Our system is broken in many ways. But again, there are many narrow fixes with broad positive implications which start the process of improvement. This is one of those narrow fixes. The 55-bed cap is a monumental failure – it should be eliminated.

Josh Mozell is a lawyer with Frazer, Ryan, Goldberg & Arnold, L.L.P.

Josh Mozell

ACMI President

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James Lee Carr, Photo courtesy of Maricopa County Sherriff’s office

Last Tuesday my husband called as I dropped our son off at his group home after spending the morning shopping and enjoying coffee together. He wanted to know where we were, and I could hear the unease in his voice. An officer had just been shot outside of a Federal court building in downtown Phoenix and given the recent escalation in violence, I could understand his concern.

We now know that this incident had nothing to do with our current political climate, but it had everything to do with another person with under-treated mental illness that resulted in a violent outcome and a ruined life. James Carr will likely be forgotten and spend the rest of his life in prison. A Federal court officer’s life has been significantly altered.

What can be done to decrease the number of heartbreaking tragedies? We need a laser-like focus on policy and resource efforts toward the gaps in care for those with more chronic forms of mental illness and who are most at risk. This is why ACMI is committed to the following solutions:

  • a person-centered culture (instead of a program-centered),
  • financial & other incentives, based on performance & outcomes, for providers to better serve this population;
  • more Lighthouse- like homes, i.e. community living properties with 24-hours per day and 7-days per week supportive staff inside these properties,
  • humane, well-regulated facilities for a secure residential treatment, involuntary as medically appropriate, for those who need more intensive care for a longer period of time to gain insight and continue their recovery in a less restrictive setting; and,
  • other possible solutions that include increasing capacity and oversight at the Arizona State Hospital.

I will continue to spend every Tuesday with my son who has a chronic mental illness because he is one of the fortunate few whose family has been able to obtain these appropriate and humane levels of treatment and support. Sadly, James Carr’s family will only be able to visit him in prison along with so many other people in this same situation. We must do better in order to prevent these needless tragedies and keep the general public safe.

By Deborah Geesling

ACMI Board

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Photo courtesy of Isaac Geesling Photography 2018

With DJ Jaffe’s passing on August 23, 2020, individuals living with serious mental illness (and their loved ones) lost a highly effective advocate.  Some of us at ACMI, notably Deborah Geesling, lost a friend as well.  So, what do we do next?   How do we build on DJ’s work?

 

DJ knew first-hand what life is like for those living with serious mental illness and their families.   He took up advocacy to make those lives easier, safer, better. And his work instructed and inspired a generation of mental health advocates.   DJ’s messages — always delivered in clear, simple English — are notable for the absence of policy lingo and the gloss of politically correct phrases.  He spoke authentically, unassumingly, and he spoke truth.  With unparalleled, laser-like precision, DJ exposed shortcomings, and failures within the current “behavioral health” industry, a trendy nomenclature that DJ would remind us is a misnomer for what the seriously mentally ill need.  DJ was clever, quiet, studious, relentless.  And, of course, pony-tailed!   He never shied away from a powerful adversary.  No Goliath was too big for DJ.  And so, he left big footprints for those of us engaged in advocacy for the seriously mentally ill.  Perhaps DJ’s greatest attribute was his unparalleled ability to identify and “call out” practical policy failures that created and sustain our behemoth public mental health system.  And while DJ is now gone, we remain blessed by his writings and speeches — his practical, informed, insightful words of wisdom.

 

During DJ’s visit to Phoenix a few years back, he spoke at a church in the East Valley and at an ACMI salon.  The salon was held on a chilly evening beneath a spectacular Arizona sky.   Chuck and Laurie Goldstein’s patio, overlooking the Paradise Valley Desert and facing the spectacular mountains east of the Valley, is both beautiful and inspiring.  Add fireplaces, thoughtfully placed heaters, and blankets, and about 50 of us had a perfect setting for conversation and reflection.  Before DJ began his remarks, we chatted privately; I thanked him for his work, which was so needed.  His typically cogent response: “Well sadly it’s needed, but it really shouldn’t be.” Those words stay with me and remind me of the value of DJ’s concrete focus.

Photo courtesy of Isaac Geesling Photography 2018

Before meeting DJ, I had read the speech that he delivered to the 2012 NAMI New York State convention.  I keep it on my computer “desktop”.  My favorite part is this:

I am not a mental health advocate.   

Like most of you, I am a mental illness advocate.  I think we need less mental health spending and more mental illness spending.  It is the most seriously ill not the worried-well, who disproportionately become homeless, commit crime, become violent, get arrested incarcerated or hospitalized. 360,000 are behind bars and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.

DJ Jaffe

NAMI/NYS convention 2012

As a tribute to DJ Jaffe, each week for the next year, ACMI’s website will feature a quote from DJ Jaffe. We are calling this, simply, “52 Weeks of Truth Telling From DJ Jaffe”.  By the anniversary of this remarkable’ s man’s passing, we’ll have quite a collection of words to live by .. a path of footprints, so to speak, to guide our advocacy and to honor this wonderful man.  RIP, DJ JAFFE.

Holly R. Gieszl, JD

Founding Member, Board of Directors, the Association for the Chronically Mentally Ill.

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August 19th, 2020 05:00 PM Arizona Come learn from respected psychiatrists- Dr. Beth Darling and Dr. Alicia L Cowdrey

Register in advance for this meeting: 

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After registering, you will receive a confirmation email containing information about joining the meeting.

Please send any questions or comments to Contact@acmionline.com. or ask questions in the meeting via chat.

Library of Congress, Prints & Photographs Division, PA-1636

For those that missed Bedlam, it will air on PBS on April 13th at 10PM

From Bedlam- When Dr. Kenneth Rosenberg trained as a psychiatrist in the late 1980s, the state mental hospitals, which had reached peak occupancy in the 1950s, were being closed at an alarming rate, with many patients having nowhere to go. There has never been a more important time for this conversation, as one in five adults – 40 million Americans – experience mental illness each year. Today, the largest mental institution in the United States is the Los Angeles County Jail, and the last refuge for many of the 20,000 mentally ill people living on the streets of Los Angeles is L.A. County Hospital. There, Dr. Rosenberg begins his chronicle of what it means to be mentally ill in America today, integrating his own moving story of how the system failed his sister, Merle, who had schizophrenia. As he says, “I have come to see that my family’s tragedy, my family’s shame, is America’s great secret.”

Dr. Rosenberg gives readers an inside look at the historical, political, and economic forces that have resulted in the greatest social crisis of the twenty-first century. The culmination of a seven-year inquiry, Bedlam is not only a rallying cry for change, but also a guidebook for how we move forward with care and compassion, with resources that have never  before been compiled, including legal advice, practical solutions for parents and loved ones, help finding community support, and information on therapeutic options.

Reviews:

“I thought it did an excellent job of looking at things from various perspectives and humanizing both the ones with mental illness and those trying to help them.  I did think that it was somewhat skewed in the sense that the cases it presented all dealt with people who never were able to get to a sustained recovery, and that isn’t an accurate reflection of the trajectory of the entire group of people with chronic severe mental illness.   I think that might make people feel a little hopeless, as even those who temporarily stabilized and were in a good place in their lives, always fell back within a few years.

However, I understand that this reflects accurately the experience of a significant number of patients, and that is what the group that the filmmaker wanted to show.  It also reflected accurately the dedication of family members, and how hard it must be to see one’s loved one fall back into psychosis and chaos over and over again.

I thought what was shown about seclusion and restraint incidents in the hospital ED was sad, as I felt that they were not using this intervention as a last resort and that they could have changed their approach, as well as the ED environment itself, to make it less agitating for patients and thus less likely to trigger the kind of behavior which would require seclusion or restraint.  However, I think many or most of those scenes were filmed several years ago, so perhaps things have changed there since then. I did think that one very relevant topic which it did not touch on much was involuntary treatment, whether it was used and how it helped or did not help.” A prominent psychiatrist

“One issue I had with the video is the patient management it showed seemed backward compared to our standards and practice here in Arizona. The use of restraints (the process of applying them and the actual physical restraints) gave me discomfort as I watched them failing to attempt to reassure and de-escalate the situation. Also, there was a lack of peer supports. I am also unsure why there was no mention of the use of long-acting injectables and they seemed to repeatedly use the same management with oral medications despite the fact that the strategy was clearly failing. We have many things to be thankful for in Arizona! We need to be vigilant of the growing issue of homelessness and feelings of hopelessness in patients with SMI.  Always thankful for people like you and ACMI in general for the true altruism you show in making things better for the patients and the people who support them.”A prominent psychiatrist

Here are my thoughts on Bedlam:

Pros:

  1. It did a great job of explaining the history of the problem and how we are still dealing with it today
  2. It respectfully yet truthfully portrayed some of the rawness of untreated psychosis that most people will never see
  3. It showed some of the successes the individuals experienced (like graduating from college)

Cons:

  1. It focused more on the failures that successes and ended on a low note
  2. To end on a high note, it could have talked about some of the improved best practices and emerging practices to better address schizophrenia such as First Episode Treatment programs for young adults aged 16-25, the success of long-standing antipsychotic injectables, and perhaps some of the newer medications that are always coming out
  3. It did not include anyone from ACMI to discuss secure residential!! As I was watching it, I kept thinking how secure residential could be very beneficial to avoid the “churn” that Dr. Olson described. Perhaps ACMI need to meet with the Bedlam producer to develop a new documentary called Bedlam 2: A New Hope (sorry for the Star Wars reference). It could feature lighthouses, secure residential, first episode psychosis programs, new medication approaches, supportive legislators/system leaders, and interviews with people who are passionate for this population.

Enjoyed the discussion panel. CEO of a behavioral health agency

“The film was timely, realistic and at least for me somewhat hopeful.  Everyone I spoke to felt it was an accurate portrayal of the system we have today.”  Prominent psychologist

“I felt it was a heavy movie to watch. I can only image how it felt as former patients. I thought that the hospital did not always try to de-escalate the situation. They had – security interacting primarily instead of the hospital staff when crisis arose.” ACMI board member

“This is the second time I have viewed it and it was harder to watch this time. Very emotional.” ACMI board member

“I thought Bedlam was strong on portraying the problem but weak on solutions.  That’s where ACMI comes in.  We and our mission (Lighthouses and Secure Residential) are major pieces of the solution.” ACMI board member

“For me, Bedlam told a sad story powerfully in the way only film can.”  ACMI board member

“I liked the way the movie followed individuals over years. That was compelling to see the decline, the toll that having a serious mental illness takes. I also liked how the movie provided insight into the life of the caregivers and impact to the care providers. Terrible (even conflicting) descriptions of the systemic issues/gaps and totally disjointed explanations of potential solutions.” ACMI board member

“Honest portrayal of the lifelong burden of chronic serious mental illness for many people.  No sugar coating. Most important-it showed that when the pendulum swings too far one way (our old asylums), it can be equally destructive to slam it back the other way (our current delivery system).”ACMI board member

“As a former practicing emergency department physician, and as a parent of an adult son with Schizoaffective disease, this film was almost a timeline of my own life through the behavioral health system. Tragic at times and hopeful at other times. “ ACMI board member

“It was a very heavy movie. Not a popcorn movie.” Chick Arnold

“I personally felt the movie was well made and it depicted what it’s like for some living with a mental illness and their quest to obtain help, the people I attended with spoke to me about how they felt parts of the movie compared to their experiences years ago as well, thank you for the invitation.” Housing supervisor

“Bedlam was a powerful documentary in both its presentation of three people in LA suffering from SMI and the environments they were living in.

I had a visceral response to the first person shown, a woman, after she was brought into a psych (I think) hospital ED, exhibiting signs of mania and psychosis. She exhibited the same behavior as my son has that I have seen more times than I wish to recount. The documentary showed the three people over the five-year period it was filmed.

Numerous times when Ian was manic and we could not reach him, I would take a friend with me to do a “welfare check,” scared that he might have committed suicide, which he threatened to do many times. I would find that Ian was not there (and was wandering the streets, behaving strangely). His apartment would be like, if not worse, those scenes shown of Jane’s home. A total mess with the entire apartment floor covered. Clean clothes and dirty clothes everywhere, garbage overflowing, food growing mold etc.

Many psych meds are not weight friendly. The viewer could see Jane’s weight gain once she was on meds. George’s heft may also have been due to meds. Both of their sizes resonated with me as we have seen our son put on a significant amount of weight over the years, due to med changes, meds thrown at him each time he was hospitalized. Ian’s weight gain is both from meds and poor food choices. Our son’s mental health and stability is our primary concern. After that, we also want our son to be as healthy as he can be. He already has high cholesterol and is at risk of developing diabetes. I suspect Jane and Ian are at risk of developing those and/or significant medical issues.

From a more global perspective, seeing the appalling conditions these three individuals with SMI are living, what services they are or are not getting, and how the mental health system is so inadequate and basically screwing them. Our country is doing nowhere near enough to have them live better lives – off the streets, out of the jails, and to stop the cycling in and out of psych hospitals, jails and the streets.

Bedlam is an eye-opener for those who have little or no involvement with the SMI. I, as well as others I spoke to after the screening, noted that there was nothing said about where we go from here. That would be a good subject for the next documentary.“ACMI board members

A short panel discussion post movie viewing: https://www.facebook.com/mary.way.378/videos/2582223305378753/?t=0

For those that missed Bedlam, it will air on PBS on April 13th at 10PM

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by Association for the Chronically Mentally Ill

Los Angeles financial district skyscrapers are seen behind a homeless tent encampment, September 23, 2015 in downtown Los Angeles. Los Angeles officials declared the homeless situation a public emergency. making Los Angeles the first city in the nation to take such a drastic step in response to its mounting problem with street dwellers. ROBYN BECK/AFP/Getty Images

Date and Time

Tue, March 3, 2020

6:30 PM – 9:30 PM MST

Location:

Harkins Theatres North Valley 16

3420 East Bell Road

Phoenix, AZ 85032

Description

THEATRE OPENS AT 6:30 pm

SCREENING BEGINS 7 pm

PANEL DISCUSSION Post Show

Description:

Ken Rosenberg becomes a filmmaker to show the national health crisis mental illness has become. The film delves into what is happening in LA as Rosenberg follows people suffering from bipolar disorder, schizophrenia, and other chronic conditions. The people have shown repeatedly cross the paths of ER doctors and nurses, police officers, lawyers, and prison guards, receiving inadequate, little or no care. Rosenberg depicts the gritty view of the mentally ill encounter in Los Angeles County.

Buy tickets $20.00

Photo illustration by Slate. Photo by Thinkstock.       

Association For The Chronically Mentally Ill (ACMI) believes there is sea change going on around mental illness and what has worked and what has areas for improvement.  Among the most promising changes is that SAMSHA and mental health “think tanks” as well as community-based organizations like ACMI are discussing the need for additional research on biomedical aspects of serious mental illness rather than just focusing on “stigma” or general mental health or “wellness.” Not enough research dollars are targeted to investigate the root causes of mental illness and effective treatment modalities from medication to effective interventions in housing and social supports. People living with serious mental illness like schizo-affective disorder are trying to survive this devastating biological brain illness. Often without adequate support.

ACMI is encouraged by the proceedings of the White House Mental Health Summit (Dec 2019) which will provide additional funding dollars designated towards research on Mental Illness research.

 Some advocates believe that  “mental health problems tend to be under-researched, undertreated, and over-stigmatized.

We need to start focusing on treatment over punishment. Research that will lead to better treatment and outcomes – measured by changes in jail and prison incarceration rates, number and length of hospitalizations, and treatment compliance over a sustained period of time. Mental health treatments remain largely inaccessible to many, especially those from lower socio-economic or disadvantaged groups. These families often lack advocates for their ill family member and can not afford private attorneys to make the system “bend” to become more patient-focused. One estimate by the Epidemiologic Catchment Area Survey reported that 40 percent of adults with severe mental illness did not receive any psychiatric care within a one-year period. Many individuals will continue to suffer from serious mental illness until we can reduce barriers to treatment access. This is a tragedy — and a likely reason for the recent tragedies in which untreated individuals living with serious mental illness engaged in acts of violence against others in the community. The National Institutes of Mental Health (NIMH), the nation’s largest funder of mental health research, has seen flat budgets since 2003, and currently funds less than 20 percent of the proposed research trials it receives. This tight funding environment discourages new researchers from entering the mental health arena and slows research progress.

Stigma is important in the general conversation to ensure parents, teachers, physicians and other primary caregivers identify the early signs of mental illness; most are present before the late teenage years.

But, importantly, in Thomas R. Insel, M.D. director of National Institute of Mental Illness directors’ message he indicates the real need for basic research.

This is promising!

If we want to offer the most effective mental health treatments, we need cutting-edge research to test those treatments and understand how they work.

We think it is beneficial for all families to submit comments asking for more research dollars target research for serious mental illness.

CALL TO ACTION!

You can submit feedback online via the NIMH request for information page, or mail your comments to:

NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the Treatment Advocacy Center- (December 18, 2019) The National Institute of Mental Health (NIMH) has a history of failing to prioritize serious mental illness in its research. Unfortunately, their recently-released five-year strategic plan draft signals their intention to continue to ignore those with the most impairing disorders.

Despite seeking public comment, the NIMH’s plan, even by the standards of federal reports, is almost unreadable. While the issues are complicated, the explanation of why they are vital shouldn’t be. However, it is not written in a way that is easy to understand or make sense of. For example, Strategy 3.3.C on page 28 reads “Enhancing the practical relevance of effectiveness research via deployment focused, hybrid effectiveness-implementation studies.”

Spearheaded by our founder, Dr. E. Fuller Torrey, the Treatment Advocacy Center has put together a comprehensive analysis of the five-year strategic plan, highlighting how it would fail those with severe mental illness. We identify sixteen concrete examples of research initiatives the NIMH should be pursuing today, initiatives that could help people with serious mental illness recover and live better lives.

Yesterday, the Treatment Advocacy Center submitted our public comment to the NIMH. However, we urge you to submit your own here. Use our comments, but also share your story of how the decisions of NIMH affect you and your loved ones. These stories are vital to help NIMH understand why their proposed priorities are misplaced.

Here are some points to consider:

  • The report fails to reflect the urgency of our national mental health crisis: As Dr. Torrey summarized, “Overall, I would say that this report is promising for people who plan to be affected with a serious mental illness in 2050 or beyond, but for anyone who is currently affected, the report offers no hope. I personally find this unacceptable and inexcusable.”
  • Where are the people who are experiencing the consequences of our failed mental health system? Except for one paragraph on the increasing national suicide rate, there is no indication whatsoever that mental health services for individuals with serious mental illnesses are an increasing public disaster. There is no mention of homelessness, criminalization of mental illness, the fact that emergency rooms are overrun with people with mental illness, or the burden of the failures of the mental health system on law enforcement.
  • Continued misplaced and unbalanced priorities: The strategic plan is strongly weighted towards basic brain science, with a continued strong emphasis on genetic research. It ignores the fact that the genetic research to date has been remarkably unproductive and likely to continue to be so, as described in a paper by Dr. Torrey and Dr. Robert Yolken published in Psychiatry Research in August.

You can submit feedback online via the NIMH request for information page, or mail your comments to: NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the National Institute of Mental Health Strategic Plan- here are the four priority areas.

The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health

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