Worth reading: Attorneys, and ACMI Board members, Josh Mozell and Holly Gieszl wrote an in-depth piece about Arizona’s mental illness treatment system in this award-winning magazine. They focus on the 55 bed limit for Maricopa County at the Arizona State Hospital (ASH). They discuss the community treatment and the true interpretation of Olmstead. *Begins page 40. #mentalhealth#mentalillness#Arizona
On page 80 is an interview with the infamous Chic Arnold. Well done!
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.
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 firstname.lastname@example.org or in the chat feature during the webinar.
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
See more surprising schizophrenia statistics, including:
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.
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.
“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:
It did a great job of explaining the history of the problem and how we are still dealing with it today
It respectfully yet truthfully portrayed some of the rawness of untreated psychosis that most people will never see
It showed some of the successes the individuals experienced (like graduating from college)
It focused more on the failures that successes and ended on a low note
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
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