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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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.

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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 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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Photo courtesy of Town Moor, Newcastle upon Tyne, United Kingdom

Forward by Dr. Charles Goldstein

It is well known to physicians like me who have spent a lifetime in Emergency Medicine that many patients are super-utilizers of the healthcare system, which we refer to in the vernacular of the ER as “frequent fliers.”

Quite often, these individuals run up high costs to the healthcare system, driven to emergency department rooms for primary care due to an underlying undertreated or untreated, serious mental illness. I believe that one of the reasons for this failure of treatment is due to a lack of safe, appropriate, and affordable housing. Though there are many other reasons why individuals with serious mental illness fail in our current behavioral health system, a fundamental problem is a lack of safe and affordable housing.

Recent findings in the Milliman firm report, a provider of actuarial and related products and services, entitled “How do individuals with behavioral health conditions contribute to physical and total healthcare spending,” revealed that the authors examined in detail the total health care costs for super-utilizers.  Its findings were that just a fraction of individuals with serious mental illness accounted for nearly half the overall health care costs of the entire population of the study group.

Remember that this is only healthcare costs, not other costs associated with undertreated or untreated mental illness, which may include interactions with community resources such as police, fire personnel, and the judicial system. Sadly, this population often ends up in jails and or prisons or homeless due to behaviors related to undertreated or untreated mental illness.

Please look at the recent article by the Treatment Advocacy Center, and its embedded link to the Milliman report for further details.

________________________________________________________________________________________________

RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization

By Elizabeth Hancq

Prevelance Rates by Cost Group Chart

RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization

By Elizabeth Hancq

Individuals with severe mental illness are often caught in the revolving door of super-utilization, cycling through inpatient hospitals, emergency departments, jail or homeless shelters.

Super-utilization refers to the phenomenon where a relatively small number of people make relatively frequent use of high-cost services at enormous public expense. Anecdotes of the role of severe mental illness in super-utilization can be found in countless local media stories, such as Super Dave in Tennessee who was arrested more than 250 times in his lifetime, or Jane in New Jersey who generated $4.4 million dollars in hospital charges in a five-year period.

However, the enumerated costs of the role of severe mental illness in super-utilization are largely unknown. “Accounting for barely 3% of the adult population, individuals with diagnoses of schizophrenia and severe bipolar disorder are known to be overrepresented in the systems most affected by the failure of the US mental health system, principally when untreated. Yet despite the human and economic toll of this pattern, the role of SMI in high utilization is largely uncharted,” the Office of Research and Public Affairs wrote in the 2017 report on the topic, A Crisis in Search of Data. 

A ground-breaking new report released last week by Milliman is an important step toward understanding the role of serious mental illness in high utilization of health and mental health care services. The report’s findings provide cost estimates to the total healthcare services received and compares spending patterns between high-cost groups, with a focus on mental health and substance use disorders.

The study authors utilized 2017 healthcare claims data from 21 million individuals with commercial insurance. They compared levels of spending for physical and mental health care by spending group, high- cost (top 10%) and non-high-cost (remaining 90%), across the prevalence of mental health and substance use disorders among this population.

The researchers found that 57% of the individuals in the high-cost group had a mental health or substance use disorder, accounting for less than 6% of the total population but 44% of the total healthcare costs. Although the total healthcare costs for the individuals in this group averaged $45,782 per year, half of these individuals had less than $95 of spending for mental health or substance use disorder treatment in a one-year period.

Accounting for fewer than 1% of the 21 million individuals in the study sample, individuals with severe mental illness accounted for 3.3% of the total healthcare costs with the highest percentage of mental health service costs for any of the groups studied. Individuals with severe mental illness “have 6.3 times higher annual total healthcare costs and 4.2 times higher medical/surgical costs,” according to the report.

The findings in the report have important implications for policy makers and insurers to consider regarding the health coverage and spending associated with high-cost individuals. The report further validates the role of severe mental illness in super-utilization and points to how the current fragmented healthcare system has contributed to a lack of equitable, accessible treatment for individuals with severe mental illness. In addition, the findings underscore the importance of integrated mental health and substance use disorder treatment to prevent the high impact of these disorders on healthcare spending and reduce the personal and societal consequences of lack of treatment for individuals in need.

References: 

Elizabeth Hancq is the director of research at the Treatment Advocacy Center.

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

 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.

 Cheryl Roberts, executive director of the Greenburger Center for Social and Criminal Justice, says “Asylums never went away; they just grew into two varieties: posh for the wealthy (in the form of a handful of fancy $100,000-plus a year mental institutions) and prisons for the poor.”

Jonathan Sherin, MD, PhD, director of Los Angeles County Department of Mental Health, doesn’t mince words. He says we did not get rid of asylums in Los Angeles in the 1960s with deinstitutionalization: we just substituted the local asylum for an ‘indoor” one called the Los Angeles County jail and an “outdoor” asylum called skid row. John Snook, director of the Treatment Advocacy Center, agreed that the dismantling of the asylum was really “trans-institutionalization”- transferring the fate of patients from asylums to streets and prisons. We still hospitalize people, they are “micro-hospitalizations”, says Snook, referring to the average length of stay of three to five days. “The state of California is a canary in the coal mine from day one,” he said, because it emptied out its hospitals early. In 1975, the city’s “containment” policy squeezed people with substance abuse disorders, mental illness, and other disabilities into a fifty-block radius skid row- helping it become what a Los Angeles Times reporter called “a dumping ground for hospitals, prisons, and other cities to get rid of people with nowhere else to go.

According to Dr. Edwin Fuller Torrey (an American psychiatrist and schizophrenia researcher. He is the Associate Director of Research at the Stanley Medical Research Institute and Founder of the Treatment Advocacy Center), the United States currently has just 2 to 3 percent of the psychiatric treatment beds that we had sixty years ago: “We have so few beds available for people with mental illness that there’s nowhere to put them.”  Because emergency rooms are legally required to treat anyone who comes through the door, people with serious mental illness (SMI) often wind up staying there for days or even weeks at a time waiting for a psychiatric treatment bed. We see that all across the country.

What Dr. Sherin, Snook, and many other policy experts hold partly responsible for this mess is the IMD (Institutes for Mental Diseases) exclusion rule, enacted in 1965 as part of the Medicaid and Medicare legislation. “The IMD exclusion explicitly prohibited Medicaid from paying for patient care in state or private hospitals that specialize in mental health care. It prohibits federal Medicaid payments for services delivered to individuals aged twenty-two to sixty-four years residing in IMDs, defined as “hospitals, nursing homes, or other institutions with more than sixteen beds that are primarily engaged in providing diagnosis, treatment, or care of persons with ‘mental diseases’ other than dementia or intellectual disabilities. To repeat- no mental hospital with more than sixteen beds.”

ACMI is encouraged by some recent actions:

·         One sign that America is waking up to our mental health crisis is the 21st Century Cures Act of 2016, which provided additional research and treatment reforms.

·         The creation of a mental health czar position in the Department of Health and Human Services now occupied by Dr. Elinore McCance-Katz, MD, Ph.D.

·         Dr. Elinore McCance-Katz, MD, PhD. has returned to SAMSHA with a priority to address Serious Mental Illness, something that had not been a priority at SAMSHA for years.

·         SAMSHA focusing on evidence-based practices.

·         The recent White House Mental Illness summit (see links below)

·         Increased discussion about changes to the IMD exclusion

·         The rise of celebrity candor about their personal experiences with mental illness.

In Arizona we are fortunate to have strong laws to help persons with SMI that do not have the insight to understand they are ill. We are often contacted by families from other states that do not have our strong laws.

Arizona will also lead the nation is providing a new level of care that is less restrictive than a level 1 psychiatric hospital, but more than community living. This level of care – secure residential treatment – will be a closely monitored program that will assist the chronically mentally ill in their recovery.

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 Below please find information mentioned in the Summit along with full video coverage and a transcript of President Donald J. Trump’s remarks.

ADDITIONAL INFORMATION

U.S. Department of Housing & Urban Development (HUD)

Office of National Drug Control Policy (ONDCP)

  • National Drug Control Policy Strategy: Establishes the Administration’s priorities for addressing the challenge of drug trafficking and use
  • Federal Rural Resources Guide: A listing of Federal programs that can be used to address substance use disorder and opioid misuse in rural communities
  • Community Assessment Tool: Provides a snapshot of county-by-county data about drug overdose deaths and socio-economic conditions in a county to help leaders build grassroots solutions for prevention, treatment and recovery
  • School Resource Guide: Guide for teachers, administrators and staff about resources available to help educate and protect students from substance misuse
  • Treatment Services Locator: Mentioned in the Federal Leaders Perspective Panel
  • Google Drug Takeback: Mentioned in the Federal Leaders Perspective Panel

U.S. Department of Justice (DOJ)