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.
Hello all, on Friday, September 18th, 2020 I watched a presentation by Healing Minds NOLA on the IMD exclusion with Tim Murphy and Teresa Pasquini, moderated by Janey Hays and Eric Smith. This segment focused on the IMD exclusion; a part of the original 1965 Medicaid law. I encourage each of you to watch this presentation.
The Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid restricts payments to states for non-geriatric adults (the exclusion applies to individuals aged 21 through 64) from receiving psychiatric care in a treatment facility with more than 16 beds. This limits the ability of states to provide an adequate number of treatment beds for psychiatric illnesses, especially those individuals with severe mental illness.
Tim Murphy, Ph.D. a psychologist, and former Pennsylvania State Senator and U. S. Congressman, was the primary author of “HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT 2015 HR 2646” (“HFMHCA”). The HFMHCA requires the Assistant Secretary of Mental Health to focus on improving the most important metrics associated with mental illness and particularly severe mental illness, including rates of suicide and attempts, emergency psychiatric hospitalizations, emergency room boarding, arrests, incarcerations, victimization, and homelessness. The bill dramatically adjusts the threshold to be used in determining the efficacy of programs. It establishes a coordinating committee to advise the Secretary that includes significant representation from criminal justice, a needed addition of an important stakeholder to the national conversation.
Read more at: https://mentalillnesspolicy.org/federalmentalillnesslegislation/hr2646/hr2646narrative.html
Representative Tim Murphy worked with many families on the HFMHCA legislation. Unfortunately, the final version of the legislation HFMHCA included measures to repeal the IMD exclusion, but these provisions never made it into the final law. Also left on the cutting room floor was a more precise and transparent definition of “grave disability”. These are important items for consideration going forward.
This webinar is about the IMD exclusion, but it goes much further explaining the history of mental illness, severe mental illness, and many of our behavioral health system’s shortcomings. This video is a straightforward exposition of how our behavioral health system fails people with serious mental illness. I urge everybody to watch it. In addition, Representative Tim Murphy makes a very impassioned plea for advocacy.
Learn about the IMD exclusion; which is Medicaid Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid payments to states are prohibited for non-geriatric adults receiving psychiatric care in a treatment facility with more than 16 beds.
By Dr. Charles Goldstein
What Is the IMD Exclusion?
The IMD exclusion is a long-standing policy under Medicaid that prohibits the federal government from providing federal Medicaid funds to states for services rendered to certain Medicaid-eligible individuals who are patients in IMDs (§1905(a)(30)(B) of the Social Security Act [SSA]). When a Medicaid-eligible individual is a patient in an IMD, he or she cannot receive Medicaid coverage for services provided inside or outside the IMD. Due to the exceptions explained in the “Legislative History” section, the IMD exclusion applies to individuals aged 21 through 64. Determination of whether a facility is an IMD depends on whether its overall character is that of a facility established and maintained primarily to care for and treat individuals with mental diseases. Examples include a facility that is licensed or accredited as a psychiatric facility or one in which mental disease is the current reason for institutionalization for more than 50% of the patients. For the definition of IMDs, the term mental disease includes diseases listed as mental disorders in the International Classification of Diseases, with a few exceptions (e.g., mental retardation). (See Centers for Medicare & Medicaid Services [CMS], State Medicaid Manual, Part 4, §4390.) Under this definition, substance use disorders (SUDs) are included as mental diseases. If the substance abuse treatment follows a psychiatric model and is performed by medical personnel, it is considered the medical treatment of mental disease.
However, even with the IMD exclusion, states can receive federal Medicaid funding for inpatient mental health services for individuals aged 21 through 64 outside of an IMD. States can provide Medicaid coverage for services rendered in facilities that do not meet the definition of an IMD, such as facilities with 16 or fewer beds and facilities that are not primarily engaged in providing care to individuals with mental diseases. https://fas.org/sgp/crs/misc/IF10222.pdf
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:
McKnight, W. (2017, July). First-episode psychosis is a ‘brain attack,’ and LAIs can prevent recurrence, expert says. Clinical Psychiatry News, 2017(1), 1.
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.
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.
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
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.
After reading the new policy, we came up with some strategies families can utilize to improve the chances of getting a decent Behavioral Health Residential Facility (BHRF) referral and preventing losing your spot in line for BHRF. Always keep accurate, detailed notes; we cannot emphasize this enough.
Work with the clinical team who completes and submits the application to ensure that the following information is in the form. Specificity Matters!!
List all previously failed BHRF programs.
List your geographical preference, so the family and or support system remains intact.
List any areas that can be triggers or traumatic for the member.
List any allergies.
Cannot navigate stairs.
List any other details pertinent to social living (cannot tolerate animals, better with same-sex housemates and/or roommates, etc.)
Have you experienced losing your place in line for a BHRF due to either re-hospitalization or refusal of a BHRF placement? If so, please tell us about your experience:
Any person may request an SMI Grievance Investigation by either calling 602-586-1719 or 1-866-386-5794 (toll-free) or completing a form linked below and sending it to:
Mercy Care Attn: Grievance and Appeals Department 4755 S. 44th Place Phoenix, AZ 85040
http://www.MercyCareAZ.org June 19, 2020 New Process – Adult Behavioral Health Residential Facilities (BHRF) prior authorization Applicable to: Mercy Care Complete Care, Mercy Care RBHA and Mercy Care DD Effective Monday, June 29th, 2020, Mercy Care is implementing new processes for Adult Behavioral Health Residential Facilities (BHRF) Prior Authorization requests and approvals. Approved prior authorizations will be valid for 30 days from the date of determination. After that period, a new prior authorization request with current clinical information must be submitted.
Mercy Care respects member choice and will support all available options. However, due to the treatment level of care required, there may not be a treatment provider available that has all of the members’ preferences. If a member and/or guardian declines treatment when an available BHRF has been offered, it will be considered a withdrawal of the request for services. If a member in the community already approved for a BHRF admits to a higher level of care, such as a behavioral health inpatient hospital or sub-acute facility, the BHRF approval will be closed and a new application for BHRF will need to be submitted with the current clinical information.
The provider must fax in the admission face sheet with a minimum of member name, DOB, AHCCCS ID, facility name and address, Level of Care (BHRF), Admit date, and primary diagnosis to Mercy Care AZ Utilization Management Department Fax # 855-825-3165. As always, don’t hesitate to contact your Mercy Care Network Management Representative with any questions or comments. You can find this notice and all other provider notices on our Mercy Care website.
COVID-19 update as we start to leave our cocoons by Dr. James Stein- Cardiologist at UW
Forward by Laurie Goldstein
With all the noise in the media and the conflicting advice, it is hard to determine facts from fiction regarding the spread of COVID and how to protect yourself. As with many choices in life, it depends. It depends on your risk factors and your comfort level.
It appears that this disease will be with us for some time, and I think there is also harm (both mental and physical) from social isolation—a quandary for sure.
I enjoyed the article by Dr. James Stein as it provides a reasonable approach to rejoining society.? Enjoy this article as I have.
Laurie Goldstein
_______________________________
The purpose of this post is to provide a perspective on the intense but expected anxiety so many people are experiencing as they prepare to leave the shelter of their homes. My opinions are not those of my employers and are not meant to invalidate anyone else’s – they simply are my perspective on managing risk.
In March, we did not know much about COVID-19 other than the incredibly scary news reports from overrun hospitals in China, Italy, and other parts of Europe. The media was filled with scary pictures of chest CT scans, personal stories of people who decompensated quickly with shortness of breath, overwhelmed health care systems, and deaths. We heard confusing and widely varying estimates for the risk of getting infected and of dying – some estimates were quite high.
Key point #1: The COVID-19 we are facing now is the same disease it was 2 months ago. The “shelter at home” orders were the right step from a public health standpoint to make sure we flattened the curve and didn’t overrun the health care system which would have led to excess preventable deaths. It also bought us time to learn about the disease’s dynamics, preventive measures, and best treatment strategies – and we did. For hospitalized patients, we have learned to avoid early intubation, to use prone ventilation, and that remdesivir probably reduces time to recovery. We have learned how to best use and preserve PPE. We also know that several therapies suggested early on probably don’t do much and may even cause harm (ie, azithromycin, chloroquine, hydroxychloroquine, lopinavir/ritonavir). But all of our social distancing did not change the disease. Take home: We flattened the curve and with it our economy and psyches, but the disease itself is still here.
Key point #2: COVID-19 is more deadly than seasonal influenza (about 5-10x so), but not nearly as deadly as Ebola, Rabies, or Marburg Hemorrhagic Fever were 25-90% of people who get infected die. COVID-19’s case fatality rate is about 0.8-1.5% overall, but much higher if you are 60-69 years old (3-4%), 70-79 years old (7-9%), and especially so if you are over 80 years old (CFR 13-17%). It is much lower if you are under 50 years old (<0.6%). The infection fatality rate is about half of these numbers. Take home: COVID-19 is dangerous, but the vast majority of people who get it, survive it. About 15% of people get very ill and could stay ill for a long time. We are going to be dealing with it for a long time.
Key point #3: SARS-CoV-2 is very contagious, but not as contagious as Measles, Mumps, or even certain strains of pandemic Influenza. It is spread by respiratory droplets and aerosols, not food and incidental contact. Take home: social distancing, not touching our faces, and good hand hygiene is the key weapons to stop the spread. Masks could make a difference, too, especially in public places where people congregate. Incidental contact is not really an issue, nor is food.
What does this all mean as we return to work and public life? COVID-19 is not going away anytime soon. It may not go away for a year or two and may not be eradicated for many years, so we have to learn to live with it and do what we can to mitigate (reduce) risk. That means being willing to accept some level of risk to live our lives as we desire. I can’t decide that level of risk for you – only you can make that decision. There are few certainties in pandemic risk management other than the fact that some people will die, some people in low-risk groups will die, and some people in high-risk groups will survive. It’s about probability.
Here is some guidance – my point of view, not judging yours:
People over 60 years old are at higher risk of severe disease – people over 70 years old, even more so. They should be willing to tolerate less risk than people under 50 years old and should be extra careful. Some chronic diseases like heart disease and COPD increase risk, but it is not clear if other diseases like obesity, asthma, immune disorders, etc. increase risk appreciably. It looks like asthma and inflammatory bowel disease might not be as high risk as we thought, but we are not sure – their risks might be too small to pick up, or they might be associated with things that put them at higher risk.
People over 60-70 years old probably should continue to be very vigilant about limiting exposures if they can. However, not seeing family – especially children and grandchildren – can take a serious emotional toll, so I encourage people to be creative and flexible. For example, in-person visits are not crazy – consider one, especially if you have been isolated and have no symptoms. They are especially safe in the early days after restrictions are lifted in places like Madison or parts of major cities where there is very little community transmission. Families can decide how much mingling they are comfortable with – if they want to hug and eat together, distance together with masks, or just stay apart and continue using video-conferencing and the telephone to stay in contact. If you choose to intermingle, remember to practice good hand hygiene, don’t share plates/forks/spoons/cups, don’t share towels, and don’t sleep together.
Social distancing, not touching your face, and washing/sanitizing your hands are the key prevention interventions. They are vastly more important than anything else you do. Wearing a fabric mask is a good idea in crowded public place like a grocery store or public transportation, but you absolutely must distance, practice good hand hygiene, and don’t touch your face. Wearing gloves is not helpful (the virus does not get in through the skin) and may increase your risk because you likely won’t washing or sanitize your hands when they are on, you will drop things, and touch your face.
Be a good citizen. If you think you might be sick, stay home. If you are going to cough or sneeze, turn away from people, block it, and sanitize your hands immediately after.
Use common sense. Dial down the anxiety. If you are out taking a walk and someone walks past you, that brief (near) contact is so low risk that it doesn’t make sense to get scared. Smile at them as they approach, turn your head away as they pass, move on. The smile will be more therapeutic than the passing is dangerous. Similarly, if someone bumps into you at the grocery store or reaches past you for a loaf of bread, don’t stress – it is a very low-risk encounter, also – as long as they didn’t cough or sneeze in your face (one reason we wear cloth masks in public!).
Use common sense, part II. Dial down the obsessiveness. There really is no reason to go crazy sanitizing items that come into your house from outside, like groceries and packages. For it to be a risk, the delivery person would need to be infectious, cough or sneeze some droplets on your package, you touch the droplet, then touch your face, and when it invades your respiratory epithelium. There would need to be enough viral load and the virions would need to survive long enough for you to get infected. It could happen, but it’s pretty unlikely. If you want to have a staging station for 1-2 days before you put things away, sure, no problem. You also can simply wipe things off before they come in to your house – that is fine is fine too. For an isolated family, it makes no sense to obsessively wipe down every surface every day (or several times a day). Door knobs, toilet handles, commonly trafficked light switches could get a wipe off each day, but it takes a lot of time and emotional energy to do all those things and they have marginal benefits. We don’t need to create a sterile operating room-like living space. Compared to keeping your hands out of your mouth, good hand hygiene, and cleaning food before serving it, these behaviors might be more maladaptive than protective.
There are few absolutes, so please get comfortable accepting some calculated risks, otherwise, you might be isolating yourself for a really, really long time. Figure out how you can be in public and interact with people without fear.
We are social creatures. We need each other. We will survive with and because of each other. Social distancing just means that we connect differently. Being afraid makes us contrast and shut each other out. I hope we can fill that space created by fear and contraction with meaningful connections and learn to be less afraid of each other
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:
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)
Cons:
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
Arizona State University Watts College of Public Service and Community Solutions and its Morrison Institute for Public Policy proposes a new approach to describing the costs associated with chronic mental illness. Rather than a top-down analysis that estimates the overall cost of CMI across the state, this analysis will utilize a bottom-up approach that will examine the costs associated with the individuals with a CMI as they move through Arizona's criminal, public benefit, and physical and behavioral health systems. This approach lends itself to a highly-graphic system map and/or flow charts that could be enhanced with animation for use in PowerPoint display. For this study's purposes, chronic mental illness will be defined as a subset of the population with serious mental illness that is unable to settle into a stable living arrangement. The symptoms and behaviors exhibited by people with CMI make it difficult for them to remain either in an independent household or group housing for an extended period. This instability leads to the frequent use of high-cost services from various medical, behavioral, and criminal justice resources. The total costs of CMI are challenging to calculate because they are spread over an extensive network of services, and the nature of CMI means that these services are repeatedly accessed. Recognizing that each individual will process through this system in a slightly different matter, we will take a bottom-up approach to estimate these costs, focusing on the values of an individual at each node of the system.
We will hold a meeting to reveal the study findings. Subscribe to our newsletter for notification.
Courtesy of Healing Minds NOLA September 16th, 2020.
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