We have an underclass in Arizona – our chronically mentally ill, most of whom suffer from schizophrenia. Society treats this sliver of people with serious mental illness just as cruelly and inhumanely as the lepers of antiquity or the untouchables of India. Many of these persons have no shelter, no bed, no toilet, no shower or bathtub, no running water, no electricity, and no reliable access to food, clean water, or medical care unless they are in jail.
Our public mental health care system is organized for and provides exemplary care for the 90% of Seriously Mentally Ill (“SMI”) persons who have insight into their illness and are mostly compliant with treatment. But, some SMI persons are chronic, i.e., they are so ill they believe the voices in their heads and their delusions are real, they suffer anosognosia (inability to recognize one’s clinically evident mental illness). They are mostly non-compliant with treatment. So, they recycle, repeatedly, through treatment programs, emergency rooms, hospitals, the streets, and jails in a hellish existence. Their physical and mental health deteriorates as their families abandon them or become exhausted, struggling to get care for them, and are blocked at every turn.
This underclass results from myths about mental illness, which permeate much of our public mental health care system and block chronically mentally persons from desperately needed care. As the father of a chronically mentally ill adult, I personally have been told each of the comments paraphrased in quotes below:
Recovery myth: “All persons with SMI can recover and lead a normal life.” In reality, chronic mental illness is more like diabetes and can be managed but rarely, if ever, cured.
Compliance myth: “All persons with SMI can ‘recover’ by complying with treatment in short-term residential programs, community living programs or independent living with ‘wrap-around’ services, combined, as needed, with assertive community treatment (‘ACT’) and occasional involuntary treatment (i.e., injections and short-term hospitalizations), regardless of the severity of their illness.” “He fails to recover because he chooses not to comply with our treatment protocols and rules, so he cannot continue in our treatment program.” The most severely ill are denied treatment because of the severity of their illness.
Acuity myth: “SMI does not impair her ability to make good decisions and is no excuse for her inappropriate behavior.” In reality, schizophrenia is a physiological impairment of the brain which does affect judgment and behavior.
Fairness myth: “All adults with SMI should be allowed to make their own medical decisions, to refuse treatment, to choose homelessness and never should be subjected to long-term involuntary care, regardless of the severity of their illness.” “Removing such liberty is unfair discrimination against the mentally ill.”
Substance use myth: “It’s just illicit drugs.” ”We cannot treat his mental illness until he overcomes his substance use problem.” In reality, 75% of SMI persons who are chronically afflicted self-medicate with illicit substances for temporary relief from painful symptoms at some point in their life, which exacerbates their illness.
These myths coalesce into an unconscious, sometimes deliberate, and often-denied culture of blocking chronically-afflicted persons from care because “he won’t comply”; “he uses drugs”; or, “he’s an adult and makes his own choices.” In reality, she thinks the voices and delusions are real, and hence she cannot participate consistently in the treatment offered to the other 90% of SMI persons who have insight. She needs a caring system free of these myths, more flexible, more attuned to her individual needs, and more accountable to the public. And, she might even need long-term involuntary treatment, opponents of which sincerely believe and use these myths to block expansion of such treatment, unwittingly keeping this underclass in our streets and jails.
Dick Dunseath, father of a chronically mentally ill adult son / Carefree, Arizona
Studies into the dangerous long-term effects of repeated psychosis should underscore the need for early and continued treatment for persons with psychotic disorders. We do understand that long-acting injectable anti-psychotic medications (LAIs) are expensive; however, one episode of psychosis necessitating an inpatient stay will far exceed the cost of LAI treatment. And, yet, despite this knowledge, insurers insist on step therapy. Let us share our experience with our insurer’s denial for our son’s long-acting injectable medication after he had failed at oral medication for a decade and subsequently been stable on an LAI.
Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are likely to be homeless, unemployed, or living in poverty. Life expectancy for patients with schizophrenia is 25 years below the average lifespan. Furthermore, patients with schizophrenia experience numerous comorbidities; weight gain, increased cardiovascular risk, and mood and cognition deterioration. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to reduced Quality of Life (QOL) and increased economic burden.
Here is an Op-Ed from the Arizona Republic on April 23rd on our experience:
Every parent’s worst nightmare is the thought of possibly losing a child in an accident or to a serious illness. An even greater fear is the thought of losing a child to an abduction and never knowing where that child is or who the child is with. Moreover, no parent wants to see their child abused or to be an abuser.
I have lost a child……. to a serious mental illness and addictions.
I have lost a child to multiple “accidents” in the current mental health system in which I have tried to participate. I go to bed every night not knowing where my child is or who she is with. I face each new day with the fear that she did not survive the night. Every day I brainstorm and research what else I might do to find her and get her to a hospital where she can be helped. Occasionally, I get a call from a police officer who has had an encounter with her, usually for trespassing or loitering. The call is a result of recent missing persons’ report that I filed. I am told that she is “okay” by the officer, even if she is demonstrating psychotic behavior, dressed in appropriately for the weather, calling 911 because she believes that she has been run over by a truck, or staying in settings where assaults are frequent.
Because she has not been given proper care and limits are placed on those of us (family, primarily) who are trying to help her, the results are as follows: multiple arrests, jail time, cruel solitary confinement, car accidents, fines, court hearings, emergency calls to police and fire departments, hospitalizations for both physical and psychiatric treatment, rehabs, halfway houses, domestic violence calls, petitions, court ordered appointments at clinics, dental repairs from assaults, disease, property damage, job losses, and loss of all meaningful relationships of friends and family.
My “child” is an adult who is persistently and acutely disabled due to mental illness and addictions. I am told over and over by physicians, law enforcement officers, counselors and friends, “She is an adult. You can’t force her to get help.” “She has to hit bottom first.” “We can’t tell you if she has been admitted.” “She can be talking to a light pole, but unless she has threatened to harm herself or others, we cannot admit her.” “Since she is already under court ordered treatment, you cannot petition her for pick-up. She has been evaluated already. She just needs to show up for her meds at her assigned clinic.” These comments demonstrate the lack of understanding when it comes to mental health and addiction issues. People who are not thinking clearly cannot make decisions in their best interest. Their brain is lying to them and sending a false narrative. Hitting bottom often means death. What good is court ordered treatment, if once you get it you cannot be evaluated again should you have a setback in your mental stability! Most severely mentally ill people have a very difficult time managing their own medications and even getting to all of the appointments without assistance.
Based upon calls from the police, my daughter is most likely living in a box on the streets of Phoenix and has been there at least 10 months. Previous to her leaving my home, she had lived with me for a year. It was one of the nicest years we had spent with her. She had developed a few close friends, interacted with family again, paid off most of her fines, obtained a job, bought a car, traveled with us, and went to all of her appointments at the court appointed clinic.
There were two things that I think made the most difference in our daughter’s progress: parental involvement and a longer stay at the mental health hospital initially. Obtaining a lawyer and gaining temporary guardianship was the first step in being able to be more involved in her care. Additionally, the longer stay at the psychiatric hospital allowed her to be evaluated thoroughly, stabilized, and prescribed the correct medication. It was amazing to see the difference in how she interacted with us and life in general following her hospital stay. Previous stays in the hospital had been so short (3-7 days) resulting in her return to the streets.
What failed? Why are we back where we started over a year ago? I believe when a medication change took place through her clinic there was a set-back in her mental health at that time and her desire for meth increased. We (her legal guardians) once again admitted her to UPC due to psychotic behavior. She was then sent to a different hospital and there they changed her medication again rather than prescribe what she had previously taken successfully a year before. I believe if she had gone back to the same hospital and seen the same doctor, she would be in a different place now. Long term care offers a chance to stabilize and seeing the same doctor offers consistency in care. The out-patient clinics primarily serve as dispensaries of meds, not in-depth evaluation and continued care. When we sought to renew guardianship, this process was dead on arrival because our paperwork had to be completed by a psychiatrist. All of her appointments at her court ordered clinic had been with the equivalent of a PA.
We must increase the number of secure, mental health hospitals. Current numbers are grossly inadequate.The length of hospital stays must increase for the seriously mentally ill allowingtime for proper evaluation, stabilization, medication, and a proper post hospital plan. We needsupervised housing for the SMI once released from the hospital as a protection for the patient, family and the general public. Currently, many SMI patients find housing in drug rehab settings which are not set up for the SMI population. Others return to the street or with family who are not always equipped to provide adequate supervision and support.
For change to take place, we must not view mental illness/addictions any differently than we do someone with dementia, Alzheimer’s disease, autism, or delayed mental functions. We make sure that they are in a safe environment and decisions are made with their best interest at heart. The SMI are being neglected and not receiving the help they so desperately need. Just walk around downtown Phoenix to see how many of the SMI are living. We take care of stray dogs better than these precious human beings.
I hope our daughter can soon get the help she needs before it is too late. We have lived the nightmare and I have only shared a brief summary of this past year, not the previous twenty years.
Anonymous Parent (in order to protect my daughter’s privacy)
These are the families that ACMI advocate for. They are the most vulnerable.
Here are my thoughts about the IMS exclusion and appropriate treatment of people with serious mental illness. We need all the levels of care available in the continuum of care. Today in-patient care is significantly limited due to this archaic Medicaid rule.
In today’s blog from Pete Earley, he refers to a report by Steven Eida, a senior fellow at the Manhattan Institute and editor of City Journal, and Carolyn Gorman, a policy analyst on issues related to serious mental illness who has served as a board member of Mental Illness Policy Org., a nonprofit founded by the late DJ Jaffe.
The Association for the Chronically Mentally Ill (ACMI) has championed the rights of the chronically mentally ill for more than three years. Our focus has been on creating appropriate housing for people with chronic mental illness, in other words, those people with serious mental illness who are not adherent to the current treatments and policies available to them under our Arizona behavioral health system. This year, we made efforts to reform our state psychiatric hospital, the Arizona State Hospital (ASH). This article is directly on point and aligns perfectly with our goals in trying to make people realize that this group of non-adherent SMI, who we choose to call the chronically mentally ill, are not well served by relegating them to the usual treatments available in the community, but, instead, frequently need longer-term treatment in level 1 psychiatric hospitals.
Also, after stability, when released to the community, they need more intensive supervision in order to treat their chronic psychiatric illness and have meaningful lives.
In addition, an upcoming study by the Morrison Institute, sponsored by ACMI, found that there were significant savings to the behavioral health system because of the decreased costs that resulted when this notch group of seriously mentally ill, the chronically mentally ill, are treated appropriately, safely, and humanely.
Will Eliminating Old Rule Return “Snake pit” Hospitals Or Help Seriously Mentally Ill Americans Get Much Needed Long Term Care?
(2-26-21) A conservative think tank has joined a growing national chorus calling for an end of a federal rule that discourages states from building psychiatric hospitals and providing long-term, in-patient care for the seriously mentally ill.
What is the IMD Exclusion and why should you care?
It’s a rule that has been around since 1965 that discourages states from building and supporting large psychiatric hospitals and pushes them instead to provide community based treatment. The so-called “16 bed rule” accomplishes this by denying states Medicaid reimbursement for adults between the ages of 22-to-64 if they are treated in psychiatric hospitals and other facilities which have more than 16 beds. States must pay 100 percent of the cost of care for the seriously ill in most long-term psychiatric hospitals, compared to 50 percent for those treated in the community.
The new report’s authors, Stephen Eide and Carolyn D. Gorman, provide a thoughtful argument in favor of dumping the rule.
They document how difficult it is for parents and others to find hospital beds when someone is in the midst of a psychiatric crisis. It is not unusual for individuals to be turned away from emergency rooms or “boarded” in them for several days waiting for a hospital bed to become available. The lack of treatment beds also leads to individuals, who can’t get help, being arrested. The authors argue that Americans with serious mental illnesses simply can’t always get the long term help that they need in a community setting.
The 16 bed rule was enacted, in part, to put an end to warehousing patients in huge state hospitals, and those who support keeping it fear that state hospitals, once again, will become giant “snake pits” if the rule is repealed.
The authors of the Manhattan Institute report disagree.
They claim safeguards are in place now that weren’t years ago. Patients must be considered a danger to themselves or others before being held against their will in a state hospital. Many more treatment programs are available now than when state hospitals were the only choice. Federal laws, especially the Supreme Court’s Olmstead ruling, which requires individuals with mental illnesses be held in the least restrictive settings, will insure patients aren’t abused and forgotten in state hospitals. Plus, every state has a Protection and Advocacy Agency, specifically designed to investigate complaints about abuse in state hospitals and other long term facilities.
Modern psychiatric hospitals “are not designed as isolation wards” and “policies on seclusion and restraint are drastically changed” from the old days, the author’s wrote.
Opponents to dropping the rule warn that having Medicaid reimburse states for long term care in larger hospitals will blow up the Medicaid budget, costing as much as $1 trillion. They argue that states would reduce their spending on community care funding if given a choice between community programs and state hospitals.
The authors of the Manhattan Institute report argue the costs would be $5.4 billion spread over a ten year period and there would be no incentive for states to reduce spending on community programs.
Republicans attempted to eliminate the IMD Exclusion when former Rep. Tim Murphy (R-Pa) drafted the Helping Families In Mental Health Crisis Act. (Murphy was credited as an adviser to the Manhattan Institute Report.) But consumer groups, such as Mental Health America, and Disability Rights advocates strongly opposed ending the rule and Democrats successfully blocked Murphy’s language when his bill was incorporated into the 21st Century Cures Act in 2016.
Channeling the late D. J. Jaffe, who was a contributor at the Manhattan Institute, the authors argue that community based mental health services simply fail to help the seriously mentally ill who need long-term care to recover. Community services are failing this group, they argue, partly because of where they are directing their resources and efforts.
“As the number of diagnoses has expanded – and the number of Americans diagnosed at some point in their lifetimes with a mental disorder has increased – the number of claimants on public mental health resources has increased.”
We prefer to spend limited tax dollars and devote time to helping the “worried well” rather than those who need treatment the most.
You can read the full Manhattan Institute report here.
(Do you believe the IMD Exclusion should be dropped? Have you had trouble securing a hospital bed for someone in crisis? Would ending it hurt community services and turn back the clock to “snake pit” hospitals? Let me know your thoughts on my Facebook page.)
About the report’s authors:
Stephen Eide is a senior fellow at the Manhattan Institute and contributing editor of City Journal. He researches state and local finance and social policy questions such as homelessness and mental illness. He has written for many publications, including National Review, New York Daily News, New York Post, New York Times, Politico, and Wall Street Journal. He was previously a senior research associate at the Worcester Regional Research Bureau. Eide holds a B.A. from St. John’s College in Santa Fe, New Mexico, and a Ph.D. in political philosophy from Boston College.
Carolyn D. Gorman is a policy analyst on issues related to serious mental illness and has served as a board member of Mental Illness Policy Org., a nonprofit founded by the late DJ Jaffe. She was a senior project manager at the Manhattan Institute for mental illness policy and education policy. Gorman served on the U.S. Senate Committee on Health, Education, Labor and Pensions. Her writing has appeared in the Wall Street Journal, New York Daily News, New York Post, City Journal, National Review, and The Hill. Gorman holds a B.A. in psychology from Binghamton University and will graduate with an M.S. in public policy from the Robert F. Wagner Graduate School of Public Service at New York University in 2021. Twitter: @CarolynGorm
From the report:
Medicaid’s IMD Exclusion was crafted for an entirely different era. During the last half-century, America built a system of community-based mental health services that did not exist in 1965. Income-support programs for the disabled, assertive community treatment, clubhouse programs, supportive housing, assisted outpatient treatment, supported employment, peer support services—these either did not exist in the 1950s, or they operated on a much smaller scale than now. Nevertheless, a small subset of severely mentally ill individuals still needs inpatient treatment on a short-term, intermediate-term, and long-term basis. The IMD Exclusion inhibits those individuals’ access to medically appropriate care. ..
Image 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
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 email@example.com or in the chat feature during the webinar.
I was pleasantly surprised to read this article stating the FDA approval for a new drug trial for schizophrenia. Research into the treatment of schizophrenia is long overdue, as it can be a devastating disease process.
Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, and its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are more likely to be homeless, unemployed, or living in poverty than the general population. Life expectancy for patients with schizophrenia is 15 to 20 years below the average. It is complicated by numerous comorbidities, such as weight gain, increased cardiovascular risk, and mood and cognition changes. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to a reduced QOL and increased economic burden.
Schizophrenia is a complex chronic illness with multiple comorbidities and high mortality rates. The development of Long-Acting Injectables and generic medication options has significantly improved patient adherence and reduced care costs in patients with schizophrenia. Despite these advances, schizophrenia has a high economic burden for patients and society. Providers caring for patients with schizophrenia are charged with a complicated task of ensuring individualized care while managing numerous adverse effects that may occur with recommended therapy (Wander, 2020).
The schizophrenia drug currently has a PDUFA date set for November 15.
A US Food and Drug Administration’s (FDA) advisory committee has given a recommendation for the ultimate approval of a combination of olanzapine and samidorphan (ALKS 3831) in schizophrenia patients.
During the joint meeting of the Psychopharmacologic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee, the group voted 16-1 to approve the treatment, developed by Alkermes.
ALKS 3831 is an investigational, novel atypical antipsychotic earmarked for once-daily oral application for the 2 psychiatric disorders composed of samidorphan, a novel, new molecular entity, co-formulated with olanzapine, an established antipsychotic agent in a single bilayer tablet.
Recently, researchers presented data from the ENLIGHTEN-2 trial, a six-month study evaluating the weight gain profile of ALKS 3831 compared to olanzapine in 561 patients with stable schizophrenia.
“The favorable outcome of today’s joint advisory committee meeting represents an important milestone for the patients, clinicians and families who may benefit from new medicines for the treatment of schizophrenia and bipolar I disorder,” Craig Hopkinson, MD, chief medical officer and executive vice president of R&D at Alkermes, said in a statement. The personal testimonies shared during today’s open public hearing reinforced the need for treatment approaches that consider patients’ overall mental and physical health. The ALKS 3831 development program is part of our ongoing commitment to develop new therapeutic options for adults living with serious mental illness.”
There is currently a Prescription Drug User Fee Act (PDUFA) target action date of Nov. 15.
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.
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.
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.
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.