Photo courtesy of Isaac Geesling Photography 2018

With DJ Jaffe’s passing on August 23, 2020, individuals living with serious mental illness (and their loved ones) lost a highly effective advocate.  Some of us at ACMI, notably Deborah Geesling, lost a friend as well.  So, what do we do next?   How do we build on DJ’s work?

 

DJ knew first-hand what life is like for those living with serious mental illness and their families.   He took up advocacy to make those lives easier, safer, better. And his work instructed and inspired a generation of mental health advocates.   DJ’s messages — always delivered in clear, simple English — are notable for the absence of policy lingo and the gloss of politically correct phrases.  He spoke authentically, unassumingly, and he spoke truth.  With unparalleled, laser-like precision, DJ exposed shortcomings, and failures within the current “behavioral health” industry, a trendy nomenclature that DJ would remind us is a misnomer for what the seriously mentally ill need.  DJ was clever, quiet, studious, relentless.  And, of course, pony-tailed!   He never shied away from a powerful adversary.  No Goliath was too big for DJ.  And so, he left big footprints for those of us engaged in advocacy for the seriously mentally ill.  Perhaps DJ’s greatest attribute was his unparalleled ability to identify and “call out” practical policy failures that created and sustain our behemoth public mental health system.  And while DJ is now gone, we remain blessed by his writings and speeches — his practical, informed, insightful words of wisdom.

 

During DJ’s visit to Phoenix a few years back, he spoke at a church in the East Valley and at an ACMI salon.  The salon was held on a chilly evening beneath a spectacular Arizona sky.   Chuck and Laurie Goldstein’s patio, overlooking the Paradise Valley Desert and facing the spectacular mountains east of the Valley, is both beautiful and inspiring.  Add fireplaces, thoughtfully placed heaters, and blankets, and about 50 of us had a perfect setting for conversation and reflection.  Before DJ began his remarks, we chatted privately; I thanked him for his work, which was so needed.  His typically cogent response: “Well sadly it’s needed, but it really shouldn’t be.” Those words stay with me and remind me of the value of DJ’s concrete focus.

Photo courtesy of Isaac Geesling Photography 2018

Before meeting DJ, I had read the speech that he delivered to the 2012 NAMI New York State convention.  I keep it on my computer “desktop”.  My favorite part is this:

I am not a mental health advocate.   

Like most of you, I am a mental illness advocate.  I think we need less mental health spending and more mental illness spending.  It is the most seriously ill not the worried-well, who disproportionately become homeless, commit crime, become violent, get arrested incarcerated or hospitalized. 360,000 are behind bars and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.

DJ Jaffe

NAMI/NYS convention 2012

As a tribute to DJ Jaffe, each week for the next year, ACMI’s website will feature a quote from DJ Jaffe. We are calling this, simply, “52 Weeks of Truth Telling From DJ Jaffe”.  By the anniversary of this remarkable’ s man’s passing, we’ll have quite a collection of words to live by .. a path of footprints, so to speak, to guide our advocacy and to honor this wonderful man.  RIP, DJ JAFFE.

Holly R. Gieszl, JD

Founding Member, Board of Directors, the Association for the Chronically Mentally Ill.

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

Forward by Dr. Charles Goldstein

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

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

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

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

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

________________________________________________________________________________________________

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

By Elizabeth Hancq

Prevelance Rates by Cost Group Chart

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

By Elizabeth Hancq

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

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

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

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

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

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

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

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

References: 

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

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August 19th, 2020 05:00 PM Arizona Come learn from respected psychiatrists- Dr. Beth Darling and Dr. Alicia L Cowdrey

Register in advance for this meeting: 

https://us02web.zoom.us/meeting/register/tZAude2gqzgoHtXxQKRf0UTthKw6NWwen3b3

After registering, you will receive a confirmation email containing information about joining the meeting.

Please send any questions or comments to Contact@acmionline.com. or ask questions in the meeting via chat.

Don’t Roll the Dice!

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

Appeal or Serious Mental Illness Grievance Form (AHCCCS ACOM Chapter 400, Section 446, Attachment A). https://www.azahcccs.gov/shared/Downloads/ACOM/PolicyFiles/400/446.pdf

ACMI

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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.      

eviction image 2020-05-20_9-44-30

We hope you will join us for the next educational session next month. ? 

Evictions June 17th 2020 5-7 PM

There will be a focus on people living with Mental Illness.

We will notify you of upcoming events if you Subscribe to our newsletter.

Please send any questions, requests for other topics, and any additional comments to Contact@acmionline.com.

Queen Butterfly photo by Bankim Desai @rochangraphics

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 fact 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 systemsand deaths. We heard confusing and widely varying estimates for 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 where 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 are 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 that 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:

  1. 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.

  1. 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.
  2. 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.
  3. 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!).
  4. 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 then 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.
  5. 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 contract 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 of other

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Please join us to learn about the various pathways to get involuntary treatment in Arizona via a virtual Zoom meeting.

You must Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/u50lcOqpqDsjJQUz933pEq1oww7pQWgQiQ

When: Apr 22, 2020 05:00 PM Arizona

After registering, you will receive a confirmation email containing information about joining the meeting.

Please join with your videos off to preserve bandwidth.

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

For those that missed Bedlam, it will air on PBS on April 13th at 10PM

From Bedlam- When Dr. Kenneth Rosenberg trained as a psychiatrist in the late 1980s, the state mental hospitals, which had reached peak occupancy in the 1950s, were being closed at an alarming rate, with many patients having nowhere to go. There has never been a more important time for this conversation, as one in five adults – 40 million Americans – experience mental illness each year. Today, the largest mental institution in the United States is the Los Angeles County Jail, and the last refuge for many of the 20,000 mentally ill people living on the streets of Los Angeles is L.A. County Hospital. There, Dr. Rosenberg begins his chronicle of what it means to be mentally ill in America today, integrating his own moving story of how the system failed his sister, Merle, who had schizophrenia. As he says, “I have come to see that my family’s tragedy, my family’s shame, is America’s great secret.”

Dr. Rosenberg gives readers an inside look at the historical, political, and economic forces that have resulted in the greatest social crisis of the twenty-first century. The culmination of a seven-year inquiry, Bedlam is not only a rallying cry for change, but also a guidebook for how we move forward with care and compassion, with resources that have never  before been compiled, including legal advice, practical solutions for parents and loved ones, help finding community support, and information on therapeutic options.

Reviews:

“I thought it did an excellent job of looking at things from various perspectives and humanizing both the ones with mental illness and those trying to help them.  I did think that it was somewhat skewed in the sense that the cases it presented all dealt with people who never were able to get to a sustained recovery, and that isn’t an accurate reflection of the trajectory of the entire group of people with chronic severe mental illness.   I think that might make people feel a little hopeless, as even those who temporarily stabilized and were in a good place in their lives, always fell back within a few years.

However, I understand that this reflects accurately the experience of a significant number of patients, and that is what the group that the filmmaker wanted to show.  It also reflected accurately the dedication of family members, and how hard it must be to see one’s loved one fall back into psychosis and chaos over and over again.

I thought what was shown about seclusion and restraint incidents in the hospital ED was sad, as I felt that they were not using this intervention as a last resort and that they could have changed their approach, as well as the ED environment itself, to make it less agitating for patients and thus less likely to trigger the kind of behavior which would require seclusion or restraint.  However, I think many or most of those scenes were filmed several years ago, so perhaps things have changed there since then. I did think that one very relevant topic which it did not touch on much was involuntary treatment, whether it was used and how it helped or did not help.” A prominent psychiatrist

“One issue I had with the video is the patient management it showed seemed backward compared to our standards and practice here in Arizona. The use of restraints (the process of applying them and the actual physical restraints) gave me discomfort as I watched them failing to attempt to reassure and de-escalate the situation. Also, there was a lack of peer supports. I am also unsure why there was no mention of the use of long-acting injectables and they seemed to repeatedly use the same management with oral medications despite the fact that the strategy was clearly failing. We have many things to be thankful for in Arizona! We need to be vigilant of the growing issue of homelessness and feelings of hopelessness in patients with SMI.  Always thankful for people like you and ACMI in general for the true altruism you show in making things better for the patients and the people who support them.”A prominent psychiatrist

Here are my thoughts on Bedlam:

Pros:

  1. It did a great job of explaining the history of the problem and how we are still dealing with it today
  2. It respectfully yet truthfully portrayed some of the rawness of untreated psychosis that most people will never see
  3. It showed some of the successes the individuals experienced (like graduating from college)

Cons:

  1. It focused more on the failures that successes and ended on a low note
  2. To end on a high note, it could have talked about some of the improved best practices and emerging practices to better address schizophrenia such as First Episode Treatment programs for young adults aged 16-25, the success of long-standing antipsychotic injectables, and perhaps some of the newer medications that are always coming out
  3. It did not include anyone from ACMI to discuss secure residential!! As I was watching it, I kept thinking how secure residential could be very beneficial to avoid the “churn” that Dr. Olson described. Perhaps ACMI need to meet with the Bedlam producer to develop a new documentary called Bedlam 2: A New Hope (sorry for the Star Wars reference). It could feature lighthouses, secure residential, first episode psychosis programs, new medication approaches, supportive legislators/system leaders, and interviews with people who are passionate for this population.

Enjoyed the discussion panel. CEO of a behavioral health agency

“The film was timely, realistic and at least for me somewhat hopeful.  Everyone I spoke to felt it was an accurate portrayal of the system we have today.”  Prominent psychologist

“I felt it was a heavy movie to watch. I can only image how it felt as former patients. I thought that the hospital did not always try to de-escalate the situation. They had – security interacting primarily instead of the hospital staff when crisis arose.” ACMI board member

“This is the second time I have viewed it and it was harder to watch this time. Very emotional.” ACMI board member

“I thought Bedlam was strong on portraying the problem but weak on solutions.  That’s where ACMI comes in.  We and our mission (Lighthouses and Secure Residential) are major pieces of the solution.” ACMI board member

“For me, Bedlam told a sad story powerfully in the way only film can.”  ACMI board member

“I liked the way the movie followed individuals over years. That was compelling to see the decline, the toll that having a serious mental illness takes. I also liked how the movie provided insight into the life of the caregivers and impact to the care providers. Terrible (even conflicting) descriptions of the systemic issues/gaps and totally disjointed explanations of potential solutions.” ACMI board member

“Honest portrayal of the lifelong burden of chronic serious mental illness for many people.  No sugar coating. Most important-it showed that when the pendulum swings too far one way (our old asylums), it can be equally destructive to slam it back the other way (our current delivery system).”ACMI board member

“As a former practicing emergency department physician, and as a parent of an adult son with Schizoaffective disease, this film was almost a timeline of my own life through the behavioral health system. Tragic at times and hopeful at other times. “ ACMI board member

“It was a very heavy movie. Not a popcorn movie.” Chick Arnold

“I personally felt the movie was well made and it depicted what it’s like for some living with a mental illness and their quest to obtain help, the people I attended with spoke to me about how they felt parts of the movie compared to their experiences years ago as well, thank you for the invitation.” Housing supervisor

“Bedlam was a powerful documentary in both its presentation of three people in LA suffering from SMI and the environments they were living in.

I had a visceral response to the first person shown, a woman, after she was brought into a psych (I think) hospital ED, exhibiting signs of mania and psychosis. She exhibited the same behavior as my son has that I have seen more times than I wish to recount. The documentary showed the three people over the five-year period it was filmed.

Numerous times when Ian was manic and we could not reach him, I would take a friend with me to do a “welfare check,” scared that he might have committed suicide, which he threatened to do many times. I would find that Ian was not there (and was wandering the streets, behaving strangely). His apartment would be like, if not worse, those scenes shown of Jane’s home. A total mess with the entire apartment floor covered. Clean clothes and dirty clothes everywhere, garbage overflowing, food growing mold etc.

Many psych meds are not weight friendly. The viewer could see Jane’s weight gain once she was on meds. George’s heft may also have been due to meds. Both of their sizes resonated with me as we have seen our son put on a significant amount of weight over the years, due to med changes, meds thrown at him each time he was hospitalized. Ian’s weight gain is both from meds and poor food choices. Our son’s mental health and stability is our primary concern. After that, we also want our son to be as healthy as he can be. He already has high cholesterol and is at risk of developing diabetes. I suspect Jane and Ian are at risk of developing those and/or significant medical issues.

From a more global perspective, seeing the appalling conditions these three individuals with SMI are living, what services they are or are not getting, and how the mental health system is so inadequate and basically screwing them. Our country is doing nowhere near enough to have them live better lives – off the streets, out of the jails, and to stop the cycling in and out of psych hospitals, jails and the streets.

Bedlam is an eye-opener for those who have little or no involvement with the SMI. I, as well as others I spoke to after the screening, noted that there was nothing said about where we go from here. That would be a good subject for the next documentary.“ACMI board members

A short panel discussion post movie viewing: https://www.facebook.com/mary.way.378/videos/2582223305378753/?t=0

For those that missed Bedlam, it will air on PBS on April 13th at 10PM

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Phoenix Arizona Feb 2020

Schizophrenia Symptoms

Examples of Physical Symptoms:

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

Examples of Feelings/Emotions:

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

Examples of Mood:

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

 Changes in Behavior associated with schizophrenia:

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

Not being able to engage in purposeful activity 

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

Examples of Cognitive Problems Associated with Schizophrenia:

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

Examples of Delusions:

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

These are persecutory in nature and take many forms:

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

Examples of Hallucinations:

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

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

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

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