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

ACMI Board

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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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Come hear from Dr. Rosenberg about his insight into America’s mental health crisis. There will be an opportunity to submit questions prior to or during the webinar. Submit questions prior to the webinar at contact@acmionline.com or in the chat feature during the webinar.

Registration in advance for this meeting is required.
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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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Courtesy of Healing Minds NOLA September 16th, 2020.

 

     Hello all, on Friday, September 18th, 2020 I watched a presentation by Healing Minds NOLA on the IMD exclusion with Tim Murphy and Teresa Pasquini, moderated by Janey Hays and Eric Smith. This segment focused on the IMD exclusion;  a part of the original 1965 Medicaid law. I encourage each of you to watch this presentation.

    The Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid restricts payments to states for non-geriatric adults (the exclusion applies to individuals aged 21 through 64) from receiving psychiatric care in a treatment facility with more than 16 beds. This limits the ability of states to provide an adequate number of treatment beds for psychiatric illnesses, especially those individuals with severe mental illness.

    Tim Murphy, Ph.D. a psychologist, and former Pennsylvania State Senator and U. S. Congressman, was the primary author of “HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT 2015 HR 2646” (“HFMHCA”).  The HFMHCA requires the Assistant Secretary of Mental Health to focus on improving the most important metrics associated with mental illness and particularly severe mental illness, including rates of suicide and attempts, emergency psychiatric hospitalizations, emergency room boarding, arrests, incarcerations, victimization, and homelessness. The bill dramatically adjusts the threshold to be used in determining the efficacy of programs. It establishes a coordinating committee to advise the Secretary that includes significant representation from criminal justice, a needed addition of an important stakeholder to the national conversation.
Read more at: https://mentalillnesspolicy.org/federalmentalillnesslegislation/hr2646/hr2646narrative.html

   Representative Tim Murphy worked with many families on the HFMHCA legislation.  Unfortunately, the final version of the legislation HFMHCA included measures to repeal the IMD exclusion, but these provisions never made it into the final law. Also left on the cutting room floor was a more precise and transparent definition of “grave disability”.  These are important items for consideration going forward.

 

This webinar is about the IMD exclusion, but it goes much further explaining the history of mental illness, severe mental illness, and many of our behavioral health system’s shortcomings. This video is a straightforward exposition of how our behavioral health system fails people with serious mental illness. I urge everybody to watch it. In addition, Representative Tim Murphy makes a very impassioned plea for advocacy.

 

For this and several more informative webinars, I urge you to visit Janet Hays, Director (Healing Minds NOLA) & Eric Smith (Mental Health Advocate and Graduate Student). They are co-hosting an 8-part series on Implementing a Full Continuum of Coordinated Psychiatric Treatment and Care.

 

   Learn about the IMD exclusion; which is Medicaid Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid payments to states are prohibited for non-geriatric adults receiving psychiatric care in a treatment facility with more than 16 beds.

By Dr. Charles Goldstein

What Is the IMD Exclusion?

   The IMD exclusion is a long-standing policy under Medicaid that prohibits the federal government from providing federal Medicaid funds to states for services rendered to certain Medicaid-eligible individuals who are patients in IMDs (§1905(a)(30)(B) of the Social Security Act [SSA]). When a Medicaid-eligible individual is a patient in an IMD, he or she cannot receive Medicaid coverage for services provided inside or outside the IMD. Due to the exceptions explained in the “Legislative History” section, the IMD exclusion applies to individuals aged 21 through 64. Determination of whether a facility is an IMD depends on whether its overall character is that of a facility established and maintained primarily to care for and treat individuals with mental diseases. Examples include a facility that is licensed or accredited as a psychiatric facility or one in which mental disease is the current reason for institutionalization for more than 50% of the patients. For the definition of IMDs, the term mental disease includes diseases listed as mental disorders in the International Classification of Diseases, with a few exceptions (e.g., mental retardation). (See Centers for Medicare & Medicaid Services [CMS], State Medicaid Manual, Part 4, §4390.) Under this definition, substance use disorders (SUDs) are included as mental diseases. If the substance abuse treatment follows a psychiatric model and is performed by medical personnel, it is considered the medical treatment of mental disease.

   However, even with the IMD exclusion, states can receive federal Medicaid funding for inpatient mental health services for individuals aged 21 through 64 outside of an IMD. States can provide Medicaid coverage for services rendered in facilities that do not meet the definition of an IMD, such as facilities with 16 or fewer beds and facilities that are not primarily engaged in providing care to individuals with mental diseases. https://fas.org/sgp/crs/misc/IF10222.pdf

 

 

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Photograph by Laurie Goldstein on streets of San Diego August 23rd, 2020

It seems to be tragic that individuals suffering from the symptoms of serious mental illness must try and fail oral medication therapies before qualifying for long-acting injectables. Besides being much more effective and efficient in medicine delivery, adherence increases significantly. Physicians are well aware that people do not take medications as directed. Lack of compliance in taking medicines as prescribed holds for physical health and mental health treatments. A person suffering from bronchitis may stop taking their antibiotics after five days of a 10-day course once they are feeling better. So, it is not surprising that many people struggle with adherence to daily or twice daily oral medications.

The issue of non-adherence has dire consequences if the condition involves the brain and psychosis. Repeated psychotic events can result in a change in the baseline. According to McKnight (2017) “Researchers now stage schizophrenia. Just like cancer, the more advanced the stage, the worse the outcome,” said Dr. Nasrallah, the Sydney W. Souers Endowed Chair and professor of psychiatry and behavioral neuroscience at Saint Louis University, told his audience. “The additional damaging effects of the second episode is what leads to clinical deterioration and can start the process of treatment resistance. But if no psychotic episodes are allowed to recur after the first episode, many patients can return to their baseline functioning, such as school or work.”

As data mount confirming the neurodegenerative effects of psychotic episodes in schizophrenia, one expert urges psychiatrists to think of psychosis as a “brain attack” which, like heart attacks, must be prevented from recurring. McKnight (2017)

According to McKnight (2017) “Schizophrenia doesn’t have to be progressive neurodegenerative unless patients relapse again and again, but that happens all the time because we give our patients pills they don’t take as prescribed. There are many reasons for poor adherence,” Henry A. Nasrallah, MD, said at the meeting held by Global Academy for Medical Education.

 By Laurie Goldstein 

ACMI

 

See more surprising schizophrenia statistics, including:

  • Rise in cost related to relapse
  • Number of hospital beds available for patients
  • Connection between adherence and relapse

https://www.medscape.com/infosites/285165.1/isarticle-1?src=0_nl_sm_0&uac=371324FZ

McKnight, W. (2017, July). First-episode psychosis is a ‘brain attack,’ and LAIs can prevent recurrence, expert says. Clinical Psychiatry News2017(1), 1.

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Photo by Michael Jin & Photo by Camilo Jimenez on Unsplash

Recently, when we were still permitted to congregate socially, I was at a Friday night service in my synagogue when a young woman in the back row emitted a frightening scream, fell, and began convulsing. During her seizure, she hurt herself by falling and hitting her head (danger to self) and broke a chair nearby when she fell on it (property damage). Of course, paramedics were called who attended to her and eventually transported her to a hospital, whereupon I lost contact with this particular young woman and her continued treatment. At no point were the police involved with this manifestation of symptoms of an otherwise presumably well-controlled person with epilepsy. Being an emergency physician myself, I can only tell you that my experience with people with seizure disorders being brought to the emergency room is that they are never subsequently taken to jail.  The options are either hospitalization or, more frequently, discharged home on appropriate medications with appropriate follow up.

 

In another hypothetical scenario, a “brittle diabetic,” usually well-controlled on his insulin, passes out while driving and knocks over a Postal box when he runs into it with his car (a federal crime!).  Police and paramedics show up; the patient is taken to an emergency room where it is ascertained that he indeed has diabetes and had become hypoglycemic. The patient is either admitted to the hospital or sent home on appropriate medications with appropriate follow-up.

 

In neither of these cases detailed above, were the patients assumed to be criminals.  People exhibiting symptoms from a chronic disease are treated appropriately for their symptoms. Their underlying illness and hospitalization, if needed, are not a problem; there are plenty of inpatient beds for them.

 

Let’s contrast this with what might have happened if this was a person with serious mental illness attending the same Sabbath service and became symptomatic, started flailing around, and did some property damage as this woman did. Police and/or paramedics would have been called. The patient may or may not have been taken to an emergency room and may or may not have gone to jail because society draws a fine line (not so fine) between apparent “medical” conditions and “psychiatric” conditions. Unfortunately, in a behavioral health crisis, when people become symptomatic because of their underlying disease, the behaviors related to their disease can suddenly be considered a crime. Also, if it was adjudged that this patient needed further treatment on an inpatient basis, they would have found this to be nearly impossible as there is an extremely limited number of inpatient psychiatric beds in the state of Arizona.

 

Currently, experts recommend approximately one psychiatric inpatient bed for every 250,000 people. In Maricopa County alone, there are about 4 1/2 million people; this equates to an inpatient psychiatric capacity that should exist of around 1,800 inpatient beds. At present, in Maricopa County, there are just 55 beds available in the public system for long-term psychiatric treatment. The inadequate number of limited long-term inpatient psychiatric beds is a figure so egregiously deficient that the reader might well be shocked that this is the truth; shamefully, it is.

 

We need to correct this appalling lack of inpatient psychiatric therapy currently available for the Seriously Mentally Ill.

Charles Goldstein, MD

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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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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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Phoenix Arizona Feb 2020

Schizophrenia Symptoms

Examples of Physical Symptoms:

  • A blank, vacant facial expression. An inability to smile or express emotion through the face is so characteristic of the disease that it was given the name of affective flattening or a blunt affect.
  • Overly acute senses- lights are too bright, sounds are too loud.
  • Staring, while in deep thought, with infrequent blinking.
  • Clumsy, inexact motor skills
  • Sleep disturbances- insomnia or excessive sleeping 
  • Involuntary movements of the tongue or mouth (facial dyskinesias). Grimacing at the corners of the mouth with the facial muscles, or odd movements with the tongue.
  • Parkinsonian type symptoms- rigidity, tremor, jerking arm movements, or involuntary movements of the limbs 
  • An awkward gait (how you walk)
  • Eye movements- difficulty focusing on slow-moving objects 
  • Unusual gestures or postures 
  • Movement is speeded up- i.e., constant pacing
  • Movement is slowed down- staying in bed (in extreme cases, catatonia) 

Examples of Feelings/Emotions:

  • The inability to experience joy or pleasure from activities (called anhedonia)
  • Sometimes feeling nothing at all
  • Appearing desireless- seeking nothing, wanting nothing 
  • Feeling indifferent to important events
  • Feeling detached from your own body (depersonalization)
  • Hypersensitivity to criticism, insults, or hurt feelings

Examples of Mood:

  • Sudden irritability, anger, hostility, suspiciousness, resentment
  • Depression- feeling discouraged and hopeless about the future 
  • Low motivation, energy, and little or no enthusiasm 
  • Suicidal thoughts or suicidal ideation 
  • Rapidly changing mood- from happy to sad to angry for no apparent reason (called labile mood) 
  • Severe Anxiety

 Changes in Behavior associated with schizophrenia:

  • Dropping out of activities and life in general 
  • Inability to form or keep relationships 
  • Social isolation- a few close friends, if any. Little interaction outside of the immediate family.
  • Increased withdrawal, spending most of the days alone.
  • Becoming lost in thoughts and not wanting to be disturbed with human contact 
  • Neglect in self-care- i.e., hygiene, clothing, or appearance
  • Replaying or rehearsing conversations out loud- i.e., talking to yourself (prevalent sign) 
  • Finding it difficult to deal with stressful situations
  • Inability to cope with minor problems 
  • Lack of goal-directed behavior.

Not being able to engage in purposeful activity 

  • Functional impairment in interpersonal relationships, work, education, or self-care
  • Deterioration of academic or job-related performance 
  • Inappropriate responses- laughing or smiling when talking of a sad event, making irrational statements.
  • Catatonia- staying in the same rigid position for hours, as if in a daze.
  • Intense and excessive preoccupation with religion or spirituality
  • Drug or alcohol abuse
  • Smoke or have the desire to want to smoke (70-90% do smoke) – note: this is a very typical behavior for people who do not have schizophrenia also!
  • Frequent moves, trips, or walks that lead nowhere 

Examples of Cognitive Problems Associated with Schizophrenia:

  • Ruminating thoughts- these are the same thoughts that go around and around your head but get you nowhere. Often about past disappointments, missed opportunities, failed relationships.
  • Making up new words (neologisms)
  • Becoming incoherent or stringing unrelated words together (word salad)
  • Frequent loose association of thoughts or speech- when one thought does not logically relate to the next. For example, “I need to go to the store to buy some band-aids. I read an article about how expensive AIDS drugs are.   People take too many street drugs. The streets should be clean from the rain today, etc.” The need to go to the store to buy band-aids is forgotten.
  • Directionless- lack goals, or the ability to set and achieve goals
  • Lack of insight (called anosognosia). Those who are developing schizophrenia are unaware that they are becoming sick. The disease damages the part of their brain that should recognize that something is wrong.
  • Racing thoughts
  • In conversation, you tend to say very little (called poverty of speech or alogia) 
  • Suddenly halting speech in the middle of a sentence (thought blocking)
  • Trouble with social cues- i.e. not being able to interpret body language, eye contact, voice tone, and gestures appropriately.
  • Often not responding appropriately and thus coming off as cold, distant, or detached.
  • Difficulty expressing thoughts verbally. Or not having much to say about anything.
  • Speaking in an abstract or tangential way. Odd use of words or language structure 
  • Difficulty focusing attention and engaging in goal-directed behavior
  • Poor concentration/ memory. Forgetfulness 
  • Nonsensical logic
  • Difficulty understanding simple things
  • Thoughts, behavior, and actions are not integrated
  • Obsessive-compulsive tendencies- with thoughts or actions
  • Thought insertion/ withdrawal- thoughts are put it or taken away without a conscious effort
  • Conversations that seem profound, but are not logical or coherent 

Examples of Delusions:

The most common type of delusions or false beliefs is paranoid delusions.

These are persecutory in nature and take many forms:

  • Overpowering, intense feeling that people are talking about you, looking at you
  • Overpowering, intense sense you are being watched, followed and spied on (tracking devices, implants, hidden cameras) 
  • Thinking that someone is trying to poison your food 
  • Thinking people are working together to harass you 
  • Thinking that something is controlling you- i.e. an electronic implant
  • Thinking that people can read your mind/ or control your thoughts 
  • Thinking that your thoughts are being broadcast over the radio or tv
  • Delusions of reference- thinking that random events convey a special meaning to you. An example is that a newspaper headline or a license plate has a hidden meaning for you to figure out. That they are signs trying to tell you something.
  • Religious delusions- that you are Jesus, God, a prophet, or the antichrist.
  • Delusions of grandeur- the belief that you have an important mission, special purpose, or are an unrecognized genius, or famous person.
  • Delusions that someone, often a famous person, is in love with you when in reality, they aren’t. Also called erotomania or de Clerembault syndrome.

Examples of Hallucinations:

  • Hallucinations are as real as any other experience to the person with schizophrenia. As many as 70% hear voices, while a lesser number have visual hallucinations.
  • Auditory hallucinations can be either inside the person’s head or externally. When external, they sound as real as an actual voice. Sometimes they come from no apparent source; other times, they come from real people who don’t actually say anything; other times, a person will hallucinate sounds.
  • When people hear voices inside their heads, it is as if their inner thoughts are no longer alone. The new voices can talk to each other, talk to themselves, or comment on the person’s actions. The majority of the time, the voices are negative.
  • Visual hallucinations operate on a spectrum. They start with the over acuteness of the senses, then in the middle are illusions, and on the far end are actual hallucinations.

Disclaimer: The following symptoms overlap with many other diseases such as bipolar disorder, major depression, the various kinds of personality disorders (specifically paranoid and schizotypal personality disorders), and other problems such as brain tumors and temporal lobe epilepsy. There is no “typical” case of schizophrenia. Everyone has different symptoms. Seek the opinion of your doctor always.

Moreover, it is always essential to keep the big picture in mind. Having just a few of these symptoms does not necessarily mean that a person has schizophrenia or any other sort of psychiatric disorder. Almost all of the signs below can be present to a “normal” degree in people; it is when someone displays them to a significant degree that they can become psychiatric symptoms. Think of all of these behaviors as being on a continuum, in which the middle 99% of people displaying varying degrees of the behavior but are still within the “normal” range. The 1% of people on the outer edges have the behaviors in extreme proportion, and/or a significant proportion of the time, and that is when they can become debilitating.

A diagnosis of schizophrenia requires that continuous disturbance (i.e. debilitating symptoms) be present for at least six months, including at least one month of specific key symptoms (active symptoms: delusions, hallucinations, disorganized speech, disorganized/catatonic behavior, negative symptoms such as severe emotional flatness or apathy)