Come hear from Dr. Rosenberg about his insight into America’s mental health crisis. There will be an opportunity to submit questions prior to or during the webinar. Submit questions prior to the webinar at contact@acmionline.com or in the chat feature during the webinar.

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Photo by Louis Reed on Unsplash

    I was pleasantly surprised to read this article stating the FDA approval for a new drug trial for schizophrenia. Research into the treatment of schizophrenia is long overdue, as it can be a devastating disease process.

    Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, and its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are more likely to be homeless, unemployed, or living in poverty than the general population. Life expectancy for patients with schizophrenia is 15 to 20 years below the average. It is complicated by numerous comorbidities, such as weight gain, increased cardiovascular risk, and mood and cognition changes. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to a reduced QOL and increased economic burden.

    Schizophrenia is a complex chronic illness with multiple comorbidities and high mortality rates. The development of Long-Acting Injectables and generic medication options has significantly improved patient adherence and reduced care costs in patients with schizophrenia. Despite these advances, schizophrenia has a high economic burden for patients and society. Providers caring for patients with schizophrenia are charged with a complicated task of ensuring individualized care while managing numerous adverse effects that may occur with recommended therapy (Wander, 2020).

Wander, C. (2020).  Schizophrenia: Opportunities to Improve Outcomes and Reduce Economic Burden Through Managed Carehttps://www.ajmc.com/view/schizophrenia-opportunities-to-improve-outcomes-and-reduce-economic-burden-through-managed-care

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FDA Advisory Board In Favor of ALKS 3831 for Schizophrenia

October 9, 2020

Kenny Walter

Relevant Topics

The schizophrenia drug currently has a PDUFA date set for November 15.

    A US Food and Drug Administration’s (FDA) advisory committee has given a recommendation for the ultimate approval of a combination of olanzapine and samidorphan (ALKS 3831) in schizophrenia patients.

    During the joint meeting of the Psychopharmacologic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee, the group voted 16-1 to approve the treatment, developed by Alkermes.

    ALKS 3831 is an investigational, novel atypical antipsychotic earmarked for once-daily oral application for the 2 psychiatric disorders composed of samidorphan, a novel, new molecular entity, co-formulated with olanzapine, an established antipsychotic agent in a single bilayer tablet.

    Recently, researchers presented data from the ENLIGHTEN-2 trial, a six-month study evaluating the weight gain profile of ALKS 3831 compared to olanzapine in 561 patients with stable schizophrenia.

    “The favorable outcome of today’s joint advisory committee meeting represents an important milestone for the patients, clinicians and families who may benefit from new medicines for the treatment of schizophrenia and bipolar I disorder,” Craig Hopkinson, MD, chief medical officer and executive vice president of R&D at Alkermes, said in a statement. The personal testimonies shared during today’s open public hearing reinforced the need for treatment approaches that consider patients’ overall mental and physical health. The ALKS 3831 development program is part of our ongoing commitment to develop new therapeutic options for adults living with serious mental illness.”

    There is currently a Prescription Drug User Fee Act (PDUFA) target action date of Nov. 15.

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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.

By Deborah Geesling

ACMI Board

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Photo by Michael Jin & Photo by Camilo Jimenez on Unsplash

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.

Charles Goldstein, MD

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Photo courtesy of Isaac Geesling Photography 2018

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

 

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

 

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

Photo courtesy of Isaac Geesling Photography 2018

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

I am not a mental health advocate.   

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

DJ Jaffe

NAMI/NYS convention 2012

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

Holly R. Gieszl, JD

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

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

Forward by Dr. Charles Goldstein

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

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

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

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

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

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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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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)

(Illustrations by Andrea Levy; photographs by Mary F. Calvert)

After reading the article in the Washington Post Magazine and hearing from families with loved ones involved with the terrible repeated failure of the behavioral health system, I thought about the differences in the initial treatment of medical versus behavioral health crisis.

While it is generally accepted that the earlier psychosis is detected and treated, the better the outcomes for the person, but, yet, it is often very challenging to get the diagnosis and first treatment. An accurate mental health diagnosis is especially difficult if the person is self-medicating with alcohol or drugs. The behavior is often attributed to drug or alcohol use, which leads to drug treatment therapies. This ends up delaying the time to behavioral health treatment or agreement on what behavioral health treatment is required.

Unlike physical ailments, there are no simple tests to diagnose a behavioral health condition.

If your loved one was experiencing bizarre behavior in the emergency room and they discovered a brain mass, a specific protocol would be adhered to. If there was no brain mass or other physical signs, you might be discharged with a referral to see a behavioral health doctor for follow up for the observed behavior.

We often hear about how broken the system is.

I am not sure that the mental health system is more broken than the physical health system. If you have had a family member with a serious medical condition, you may experience many of the same things (premature discharge from the hospital; failure to admit to the hospital from the ED even when in dire circumstances; discharge to the street of homeless people who have serious medical needs which are bound to worsen in that setting, etc.).

The difference is that those with serious medical conditions are more often able to advocate for themselves in these situations than acutely ill psychiatric patients, or they have family who can do so (while more of the very ill psychiatric patients are all on their own because they have burned bridges with family or family got burned out trying to help them). Because many acutely ill psychiatric patients have poor insight into their treatment needs, they often are happy to go along with a decision that treatment is not needed, even when it is a misguided decision.

In addition, the criteria for hospitalization of an acutely medical person tend to be more clear-cut and objective – i.e., based on certain physical exams, lab tests, or imaging findings – whereas the decision to admit an acutely ill psychiatric patient has more subjective judgment involved. Besides, if the admission is involuntary, that introduces another element of complexity, in that the law on the matter is often confusing and interpreted differently by different clinicians and in different States.

ACMI

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What Schizophrenia Does to Families

By Abigail Jones

JANUARY 13, 2020 Washington Post Magazine

Alissa Dumsch flips through her high school yearbook, pausing on a photo of a hulking young man with sandy hair and a chiseled jaw. “There’s Aaron,” she says, pointing to her brother. “He was so good-looking.” She turns a few more pages. “Here he is at student council. I ran every year — and I lost every year,” she says, laughing. “He ran one year and, like, won by a landslide!”

We’re sitting in her home in Scarsdale, N.Y., along with her parents, Anita and Pat, and her sister, Amanda. Alissa’s husband quietly tapes hockey sticks in the corner while the youngest of their three boys, a toddler, waddles into the room with an oversized navy helmet teetering on his head.

Aaron is the only one missing. He knows we’re here though. His parents told him. And he knows about this article; he gave me permission to write it the first time we spoke by phone, in the fall of 2018, when I explained what it would mean to share the story of his struggle with mental illness with a journalist and have his name and photo printed in a national magazine. “That would be awesome,” he said. As time went by, his family and I continued to check in to make sure he still felt that way.

Pat reaches toward the coffee table and picks up a scrapbook, titled “A Superstar’s Keepsake,” that Alissa made decades ago to commemorate Aaron’s accomplishments in high school. “Oh gosh, it makes you think,” he says, studying the pages as if they were Aaron himself. “Wish you could turn back time, go back to that day and relive some of these things.”

In 1990s Tucson, where football reigned and quarterbacks were king, Aaron Dumsch looked the part. He was a military brat who’d arrived at Sahuaro High School his sophomore year oozing natural talent. “He was a tall kid, with a rifle arm, and real smart. He had all the potential in the world,” recalls former Sahuaro football coach Howard Breinig.

During the final game of the 1994 season, Sahuaro’s senior starting quarterback injured his shoulder; Aaron, a junior, took over with less than a minute before halftime and his team trailing 21-20. He threw six passes in 37 seconds, giving Sahuaro a 27-21 lead at the half. Sahuaro won that game, and Aaron’s heroics continued soon after, at the Class 4A state championship. Sahuaro was down 17-9 with 1:27 left on the clock when he scored a touchdown and a two-point conversion, tying the game, earning his team a co-state championship and sending Breinig, who was retiring that very night, off with his first and only state title.

“I remember sitting in the stands — I still get teary-eyed thinking about it,” Alissa says. “We couldn’t believe it. We were so proud. He was so talented.”

The Dumsches could tell stories about Aaron’s exploits all day, but there are other tales, too, the kind his family would rather forget. Like the time he shoved a woman with a walker. Or the time he lay on the couch, watching the news coverage on 9/11 and laughing. “We’d lock our bedroom doors because we were afraid he’d come in and hurt us,” Anita says. “He could go into these rages where he would just scream and holler and push and hit.”

Over the past 20 years, Aaron has spiraled from a high school star and an academic all-American on the Arizona State University football team to a ward of the state of Maryland. He has been captive not just to a schizophrenic brain but to a perfect storm of factors — underfunded treatment facilities, prisons and jails serving as de facto asylums, a lack of advancements in medication — that has made it generally harder for people with serious mental illnesses to get the help they need.

All the while, Anita has been at Aaron’s side, trying to care for her son while insulating her family — and the public — from his unpredictable behavior. As she puts it, “Protecting the mentally ill, you become mentally ill just trying to get it all together.”

A family photo of Anita Dumsch and her son, Aaron, as a child.

High school sweethearts from Michigan, Anita and Pat Dumsch married young and had Aaron in their early 20s. Alissa arrived 17 months later, Amanda three years after that. Anita was a secretary, and Pat worked at a factory, but life was a struggle until Pat joined the Air Force, training as a dental hygienist and moving his family to six states and Norway over the years.

Wherever the Dumsches landed, Aaron’s athletic talent shone. When he was 6, football scouts came to the Dumsch home in Wichita Falls, Tex., to persuade his parents to let him play. At 10, he made it to a state championship free-throw shooting contest. At 12, he was the starting pitcher on a Norwegian baseball team, leading it to the Little League World Series in Europe. In high school in Tucson, he quit baseball midseason, switched to track and won his first race wearing borrowed shoes. “Every sport at almost every stage in his life he excelled at. It was crazy stuff,” Anita says.

By senior year, Aaron’s star seemed unstoppable. As quarterback on the football team, he was a fixture on the local news. USA Today nominated him as an all-American high school athlete. But he was more than a jock. “He was a brainiac. Very sweet. A guy who could cry and wasn’t afraid to,” says Jennifer Carner, who dated Aaron for two years in high school and college. “But also he’d stick up for himself. He was this conundrum of a personality, but it was also what made him sexy.”

“He had this really genuine, warm spirit,” says Cara McCrain, a high school friend of Aaron’s and Alissa’s. “There was nothing he couldn’t do — in school, in (sports), , have any girl he wanted. He was it.”

Graduating at the top of his class, Aaron was recruited by the Naval Academy but chose to attend ASU; he’d had enough of military culture. He walked onto the football team at the end of his freshman year. (He had chosen not to play that fall mostly on principle; ASU hadn’t formally recruited him.) Anita and Pat remember standing at the edge of a practice field at training camp when a player with long hair and flip-flops walked over and introduced himself. “I’m Pat Tillman,” they remember him saying. “I just want you to know you’ve got a really great guy here as a son and I’m gonna keep my eye out for him.” (Tillman, then a star on the ASU football team, later played for the Arizona Cardinals before famously enlisting in the Army after 9/11. He was killed by friendly fire in 2004.)

Aaron won awards for the highest grade-point average on the team and best offensive scout team player, and made the dean’s list twice. He had a girlfriend he thought he might marry. “He should have been CEO of a Forbes 500 company,” Breinig says, “or a professor at some big university.”

“He had this really genuine, warm spirit,” says Cara McCrain, a high school friend of Aaron’s. “There was nothing he couldn’t do — in school, in [sports], have any girl he wanted. He was it.”

Instead, everything unraveled. Aaron, certain that he’d receive a coveted football scholarship for his senior year, was gutted when it went to someone else. Anita calls that “the turning point,” the moment that “broke his spirit.” That fall, he quit the team. He spent his days smoking marijuana. Soon, he began calling home with strange claims: His dorm room was bugged, or his toes were growing, or the TV was talking to him. He lost a car and a couple of bikes. “Our initial thought was, ‘Oh dear god, I think he’s on drugs,’ ” Anita says.

Once, Alissa recalls, he grabbed her arm in the car. “They’re watching me!” he whispered, his face full of fear. When she asked what he meant, he leaned in closer, glanced behind him and said, “The movie ‘Varsity Blues.’ They stole my life.”

Two weeks before graduation in May 2000, Aaron threatened students in an ASU auditorium, raving that he was going to fight them and kill them. “I get this phone call. It’s basically, ‘He’s being expelled. You need to come get him,’ ” says Anita, who dropped everything and drove up to Tempe. “I get to his dorm room, which was an apartment he shared with a guy, and he was like, stoned. I mean, he was totally stoned,” she says. “I was just so mad.”

Anita took Aaron to meet with administrators, and as he sat there mumbling, acting “completely out of it,” she begged them to let him withdraw rather than expel him from school. “In that moment I’m thinking, ‘He has a life ahead of him! He’ll never get back into college!’ ” Anita says. The administrators acquiesced. By the end of the day, she’d loaded everything Aaron owned into her small Nissan Sentra. “I remember his bike was on the back of the car, hitting the trunk the whole time. I mean — ” She covers her face with her hands. “I couldn’t even believe I was doing this.”

And so Aaron moved home. His parents were still convinced he was using drugs, but the truth was more alarming: Aaron was in the midst of his first psychotic break.

Anita Dumsch, daughter Amanda and husband Pat with a photograph of Aaron, who was a gifted athlete in his youth.

The onset is so cruel,” says Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard. He’s referring to the fact that schizophrenia typically strikes in the teens and 20s. “Family and society are just finishing their incredible fiscal, emotional, cognitive investment in the production of a wonderful person, and that person is snatched away.”

Fewer than 1 percent of Americans have schizophrenia, though the rate is difficult to measure because the illness can be hard to diagnose and many population studies omit people who are institutionalized, incarcerated, do not speak English or are homeless, according to the National Alliance on Mental Illness. It is a severe mental illness affecting how a person thinks, feels and acts. In addition to delusions and hallucinations, symptoms can be as varied as a flat affect and lack of focus and motivation, disorganized thinking and speech, difficulty making decisions and expressing and managing emotions, and memory loss and other cognitive impairments. Some people hear voices and believe others are plotting against them.

Scientists don’t know exactly what causes schizophrenia because the brain is so complex. While some of the risk has to do with genetics, most people with schizophrenia don’t have a first-degree relative with the illness, though many have a family history of psychosis (suicide and substance abuse run in Aaron’s extended family). Environmental factors — such as stress, trauma, maternal malnutrition, and infection before birth and during childhood — can play a role. Evidence also shows that heavy marijuana use is a factor, especially among young people with a history of family psychosis, though this connection is controversial. For those who already have schizophrenia, cannabis can trigger psychotic episodes.

With effective treatment, some people with schizophrenia lead fulfilling lives, but there is no cure, and due to a variety of factors, people with schizophrenia (and other serious mental illnesses) die on average more than 25 years earlier than the general population. Schizophrenia also wreaks havoc on families, who can spend decades mourning a loved one who’s still living. Stigma makes an already dire situation worse.

“I used to hesitate to tell people about this disease,” Anita says. “It would be so much easier to say Aaron had brain cancer, because the empathy would be immediate. When I say, ‘My son is mentally ill with schizophrenia,’ it’s as if I said leprosy.”

I first met Anita and Pat in the fall of 2018 at their home in Bowie, Md. It was a week before Thanksgiving, and they had already erected not one but two towering Christmas trees. In the photographs scattered around the house, time seemed to stand still: There were Polaroids of Aaron, Alissa and Amanda sitting on Santa’s knee; pictures of the three kids at various graduations; framed photos of Aaron wearing his maroon-and-gold ASU football uniform.

“Remember the Palo Verde hospital he was in, in the psychiatric unit? We walk in there to see him — I’ll never forget this,” Anita said. “He shaved half his head — just half! And he had these goggles. These glasses. They were so thick, because his vision was so bad, because he was on these drugs … with severe side effects, like tremors and blurred vision. I remember we walked out of there, and I was like, ‘Oh my god.’ And then we hit a cat going home. I had my very first — ” she paused. “It was this horrible panic attack. I wanted to run through the patio window. We had a pool in the backyard and I remember waking you up” — she looked at Pat — “and I said, ‘I have to have someone hold on to my hand.’ I had overloaded.”

Anita admits she ignored the first time someone suggested that Aaron might have schizophrenia. It was the fall of his senior year of college, and she’d arranged for him to see a psychiatrist near ASU, thinking he needed drug counseling, possibly even help with depression. “The doctor contacts me and says, ‘Your son has paranoid schizophrenia.’ I said, ‘WHAT?!’ He said, ‘It’s a full-blown case. … My practice is full, but you have to get him help. Things are gonna get worse.’ ”

Anita didn’t believe him. How could this doctor, who’d met Aaron only once, know anything about her son? “I thought it was a hasty diagnosis. I thought, ‘Oh, I just got a bad doctor,’ ” she says. Aaron returned to school, and the Dumsches carried on with their lives, hoping their “good boy gone bad,” as Anita puts it, would soon find his way.

Nearly a year later, after Aaron had left ASU and moved home, Anita and Pat slowly began to realize the truth: That psychiatrist had been right — Aaron really was ill. They found themselves living at home with a son they hardly recognized. Aaron would say that he was dating Winona Ryder, or insist that he was a German shepherd, or claim to be African American. He’d sit in the hot tub in their backyard, arguing with voices no one else could hear. He would wander the streets and get into fights or steal his parents’ money. When neighbors threatened to call the police, they’d say, “Go ahead,” overcome with relief. (Aaron calls many of these incidents “painful memories.” That he remembers most but not all of them is part of his illness.)

Anita and Pat felt paralyzed. They knew very little about schizophrenia and had no one to turn to. With two daughters to send to college and a combined $65,000 annual income, they also had few resources to draw on. Because of military rules regarding dependent coverage, Aaron lost his health insurance once he left ASU. Anita spent three years petitioning the Air Force to restore dependent coverage, then another two applying for Social Security disability benefits, including Medicare. She also applied for Medicaid for Aaron so that he’d be eligible for food stamps and group home and community programs.

“Protecting the mentally ill,” says Anita Dumsch of her son, Aaron, “you become mentally ill just trying to get it all together.”

During these first few years, Anita and Pat — but mostly Anita — cared for Aaron on their own, managing his symptoms, traipsing after him at all hours of the day and night, searching for a cure. It was what she calls her “we can fix this” stage. “We were angry and mad and [would say] ‘Straighten up’ and ‘Why are you doing this?’ We didn’t realize the gravity of what he was in,” Anita says. “I really thought he’d come back and it was just going to take some really strong, tough love and restrictions.”

Sometimes they’d leave him in jail for a night, or bring him to a shelter. Once, he racked up $2,000 in hotel expenses. “Pat and I dropped him off at so many homes and halfway houses and crisis centers and, actually, bus stops. Things a parent shouldn’t ever have to do for their child,” Anita says. “I can’t tell you how many nights we drove around looking for him, whether it was in Arizona or Maryland or in D.C. or — ” She chuckles. “It would be hours and hours, and then we’d find him or we didn’t find him, and then we’d come home and go to work the next day. It was such a bizarre routine.”

The initial years of Aaron’s illness were especially painful for Alissa and Amanda, who were trying to make their way into adulthood with a storm hovering at home. Alissa developed an eating disorder while at Wellesley, but Aaron’s illness overshadowed it. “I didn’t get the help I would have had he not been sick,” she says. It took her 13 years to recover. After graduating in 2001, she moved in with her parents to help care for Aaron, but the arrangement barely lasted a year. “Our unit was unraveling,” Alissa says. “You almost wanted to hole up and pretend that life wasn’t happening around you.”

There was a flicker of hope in 2002, when Aaron, now 25, enrolled at the University of Arizona in Tucson and moved into an apartment near campus. His medications seemed to be working. He walked onto the Division I basketball team (but was disqualified before he could play because his years of eligibility had expired). For a brief moment, everyone could breathe again.

That fall, Anita, who had been working as a secretary for the Air Force chaplaincy, was offered a promotion that would mean relocating to the Washington area. Aaron was seemingly settled, Alissa was living in New York and Amanda was at the University of San Diego. Pat, who had retired from the Air Force after 20 years of service, moved with Anita to Maryland.

Their respite was short-lived. Aaron’s landlord evicted him for smoking, bothering neighbors and panhandling. By Christmas, he’d flunked out of school and moved in with his parents. And so the Dumsches were back to the earlier pattern of trying to manage Aaron, knowing full well they couldn’t manage him at all.

Anita Dumsch shows a picture she took of Aaron during a visit with him at Springfield Hospital Center.

The Dumsches clung to family life as they’d known it, taking Aaron to church, to the theater, on vacations. Disaster followed everywhere. During one stay at a hotel, Anita woke up in the middle of the night and realized that Aaron had disappeared, only to find him outdoors, doing drugs with some guy. After Alissa moved to New York, Aaron visited a few times. “All of a sudden he would just be gone,” she says. “And then you realize your neighbor is calling the cops because there’s some weird guy standing out front, and it’s my brother, spewing stuff outside your door.”

Friends and relatives told Anita to kick him out, or to watch “A Beautiful Mind” (about John Nash, the Nobel Prize-winning mathematician with schizophrenia) and “Sybil” (about a woman with an entirely different mental illness), as if those movies held some secret solution. “After seven years reliving the same thing over and over again, with the same results, I finally got to that point of accepting,” Anita says of Aaron’s illness. “Let’s stop trying to figure out why and how this happened. Let’s now try to keep him alive.”

By this point, Anita had already become the quarterback for Aaron’s care, calling doctors, navigating insurance companies, seeking out treatment programs, managing his behavior. Today, asking Anita to recount which group home or outpatient program Aaron tried when, or what each one focused on, is futile. They all blend together. “It’s a different city, different group home, different case manager. It could be the same city but a different home. I can’t even remember them all,” she says. “I have boxes of documents of every place. I just kept saving them. I didn’t know what I needed anymore.”

When I visited the Dumsches in Bowie in 2018, Anita drove me past a few of the programs Aaron had tried. One was a group home on a quiet street, nestled amid two-story rowhouses. “It’s kind of this camouflage. It doesn’t look that bad until you open the door,” she said, showing me photos on her smartphone of broken windows, piles of garbage, a filthy bathroom and mattresses on the floor.

Another program convinced her that she should give Aaron more freedom, not less. “You can’t coddle him,” Anita remembers the psychiatrist saying. That advice proved nearly fatal when Aaron said that he wanted to go to Jamaica, and Anita reluctantly agreed. Within a week, she received a call from a woman at Aaron’s hostel. “She goes, ‘I’m letting you know that we’re putting him on the next plane. He’s going to get killed here,’ ” Anita says. “He was in really bad areas of Jamaica. She told me someone had a gun on him. He was asking to buy marijuana.”

As time passed, Anita and Pat came to realize that they needed a long-term solution for Aaron. They wouldn’t be around forever, and they vowed not to burden their daughters with his care. “It would destroy their lives,” Anita says. But where could he go? Emergency rooms typically sent him home as too high-functioning, and when they did admit him, he ended up in a mental health ward or in a behavioral health hospital for a few days to two weeks, which was never enough time to stabilize him. Insurance wouldn’t cover a longer stay. The Dumsches tried psychiatrists who visited the house and drop-off day programs. Medication alone wasn’t a long-term solution; Anita often found Aaron’s pills in the toilet, inside his shoes or on the driveway. She even wrote letters to Oprah Winfrey and Dr. Phil, begging for guidance. (They never responded.) “You’re just hoping for a miracle,” Anita says. “I’d sell my soul to the devil just to get the help I thought he needed.”

People with serious mental illnesses make up a third of the U.S. homeless population, 20 percent of jail inmates and 15 percent of state prisoners, according to the Treatment Advocacy Center, a nonprofit organization working to improve health care and laws for those with severe mental illness. And the groundwork for this situation was laid long ago.

In the mid-19th century, teacher, author and activist Dorothea Dix championed the humane treatment of the mentally ill, establishing or expanding more than 30 mental hospitals nationwide and launching a movement for mental-health-care reform. A century later, state hospitals were overrun, understaffed and poorly funded, filled with patients living in often abhorrent conditions. With the discovery of new antipsychotic drugs, an effort began to empty out state psychiatric hospitals, sparking a historic shift to community-based care that was buoyed by the Kennedy administration’s 1963 Community Mental Health Act, which funded public and nonprofit community mental health centers (CMHCs), as well as the advent of Medicaid.

Between 1955 and 1994, the number of mentally ill patients in public hospitals fell from nearly 560,000 to 71,000, according to E. Fuller Torrey, a psychiatrist and schizophrenia researcher who founded the Treatment Advocacy Center. Today, he puts that number at 35,000. While deinstitutionalization succeeded in emptying out overcrowded state hospitals, the planned shift to community-based care was inadequately funded and staffed. CMHCs were supposed to be a lifeline for those with severe mental illnesses, but many catered to people with more “manageable” problems — only 4 to 7 percent of CMHC patients came from state hospitals in the beginning, and as time went by, that number dropped, even though hospital admissions increased in the same period. In 1981, the Reagan administration turned federal funds reserved for CMHCs into block grants, giving states discretion on how to spend their dollars — and permission to ignore the federal model of care designed under Kennedy.

Some experts charge that CMHCs continue to focus on people with less severe problems, leaving individuals like Aaron to flounder. “It’s much easier to serve someone with mild depression or mild anxiety disorder who’s willing and able and wants to come to therapy sessions,” says Elinore McCance-Katz, assistant secretary of mental health and substance use at the Department of Health and Human Services, who leads the Substance Abuse and Mental Health Services Administration. CMHCs “need to do more to serve the most seriously ill, and they’re not doing that job right now. And states need to take care of people who are homeless, on the streets, psychotic, hungry, cold, physically ill and mentally ill. This is the United States of America. Shame on us for not doing a better job.”

“I’ve sent a million emails. I’ve taken photos of the facilities. I’ve questioned how staff members are trained,” Anita says. “I’ve done all this because I don’t want to be the mother on TV being asked, ‘Why didn’t you get him help?’ ”

Some people with schizophrenia lack insight into their illness and can’t or won’t seek treatment on their own. That’s Aaron. For such people, Torrey argues, Maryland “is one of the last states you want to be living in.” That’s because it’s one of three states without a law for assisted outpatient treatment, or AOT, which provides community mental health services under a civil court order for people with serious mental illness who have a history of refusing or struggling to follow treatment.

Studies have shown that AOT, if adequately funded, can reduce homelessness, hospitalization and incarceration. Yet some critics argue that it violates patients’ civil liberties. Others believe there are more effective approaches to treatment than forcing compliance. “Part of the reason Maryland hasn’t gone down this road is there is a terrific working alliance between folks who receive services, the provider community and the department of mental health,” says W. Lawrence Fitch, former forensic director in Maryland’s public mental health system, who now teaches mental health law at the University of Maryland School of Law. “They work together to reduce stigma and try to encourage services that reach out to people. The goal is to make it attractive enough so people will want to receive services.”

Of course, the quality of that care often depends on local resources. “Aaron’s day program consisted of some groups but mostly hanging outside, smoking,” Anita says. Once, she tells me, he landed in a group home where he was mugged and had a gun pulled on him.

Another barrier to care is the number of patients at state hospitals who have a mental illness and are involved in the criminal justice system, known as forensic patients. Maryland has five state psychiatric hospitals, and court-ordered patients occupy most of these beds — 90 to 95 percent at one facility, 60 to 75 percent at the other four, according to the Maryland Department of Health. Forensic patients often stay for long periods, so it’s no wonder that Aaron — whose frequent admissions generally were not court-ordered — kept getting sent home.

Aaron at Springfield Hospital Center in Sykesville, Md., in November 2018.

All that changed over Christmas in 2006. That’s when Aaron finally “broke into the legal system,” as Anita puts it. He’d recently started dating a woman he’d met while at a doctor’s appointment. A few months into their relationship, she called Anita and Pat late at night and said that Aaron had hit her. Instead of trying to talk her out of pressing charges, they drove her to the police station so she could file a restraining order against him. Weeks later, the police showed up at their house with a warrant for his arrest, pulled him out of the shower and handcuffed him. “I was petrified they were going to shoot him,” says Amanda, who was home at the time. “I thought, he’s gonna say something or lash out, and they’re going to overreact. I was angry, but then, I was also relieved he was going.”

Aaron was taken to a local jail, then moved to Springfield Hospital Center for evaluation. He didn’t leave for more than two years. When he finally did, it was under conditional release: He had to agree to take his medication, attend outpatient treatment, abstain from drugs and avoid altercations with the law for the next five years. If he broke any of these conditions, he’d go back to Springfield. This was the safety net Anita had been searching for. “We told him, ‘It’s not gonna be forever,’ ” she says. “In my head I was like, ‘If it is forever, he’s in the [hospital] system.’ Once you’re out, you can’t get back in unless you’re back in jail; I didn’t want him in jail. He’d be killed in jail.”

So far, Aaron has been released from Springfield three times in 13 years — and broken his conditional release each time. His current stay began in March 2018, after he hit a worker at his group home. For several months leading up to that incident, he’d been going off the rails during car rides with Anita, staring at strangers through the window and yelling, “I’m gonna f— that person up!” and “That person’s a little b—- that needs to get kicked!” (Asked if he remembers those incidents, Aaron replied: “I feel so bad. When I was in high school, I always did the right thing. I got away from what made me a good person.”) Anita would contact the people involved in her son’s care — the counselor at his group home, case managers — and explain that he was a danger to himself and others. But it would take months to get him into a more controlled environment.

Then, in early February 2018, Aaron got into a fight with the staffer at his group home. Despite a court order to admit him to a hospital, he was released within 12 hours, then sent to a crisis center before being transferred back to Springfield. A week after this incident, one of the deadliest school shootings in American history unfolded in Parkland, Fla., when a 19-year-old man killed 17 people at a high school. That’s when President Trump issued a tweet that nearly broke Anita: “So many signs that the Florida shooter was mentally disturbed, even expelled from school for bad and erratic behavior. Neighbors and classmates knew he was a big problem. Must always report such instances to authorities, again and again!”

“I went berserk,” Anita says of the moment she read the tweet and realized that the president of the United States was essentially blaming those tragic deaths on the shooter’s family. “I was like, Oh my god! Nobody knows what I’ve gone through for the past 20 years. … It was a direct hit as a family member that has alerted authorities more times than I can remember, only to be shut down, dismissed or ignored.”

One of the gravest misconceptions about people with serious mental illness is that they’re all dangerous. This refrain often surfaces after mass shootings, and yet most individuals with schizophrenia are more likely to be victims of violence than perpetrators, research shows. Aaron, of course, does have bouts of aggression, which is why Anita has worked so hard to contain his behavior. “I’ve sent a million emails. I’ve taken photos of the facilities. I’ve questioned how staff members are trained,” she says. “I’ve done all this because I don’t want to be the mother on TV being asked, ‘Why didn’t you get him help?’ ”

The Dumsches know all too well that speedy access to leading treatments is harder than it should be. Nor is high-quality care a panacea; even if doctors found cures that eliminated active psychotic and major mood disorders, violent acts in general would decrease by just 4 percent, according to Jeffrey Swanson, a professor in psychiatry and behavioral sciences at the Duke University School of Medicine. Yet a small number of people with serious mental illness do commit violent acts, and most of them are untreated or inadequately treated. That’s why, every day that Aaron isn’t safely at home or in a facility, Anita is terrified that he might hurt himself. Or someone else.

“I would love nothing more for Aaron than to come back home,” says Pat. “I miss the kid. I’d like to see him get some kind of a life again. He never will at this hospital. Again, it’s one of those situations where if he were to come home and he goes into these bizarre moments — ” He trails off, remembering the time Aaron punched him in the head twice, almost knocking him out.

“I’m not sure what’s gonna happen with me, Mom,” Aaron says. Anita leans forward. “Something will happen. Something always happens. We’ll just have to — ” She pauses. “Do the best we can.

Not all stories of schizophrenia unfold like Aaron’s. Brandon Staglin had his first psychotic break in 1990, the summer after his freshman year at Dartmouth. “I was trying to fall asleep,” he says, “and all of a sudden, I felt like half myself had vanished — the right half of my head felt totally different. Like my soul had vanished. I tried to call back thoughts of my girlfriend, family, friends. None sparked any affection in me. It was terrifying.”

A few days later, Staglin checked himself into a psychiatric hospital in Walnut Creek, Calif. His parents, who had been traveling in Europe, rushed home and sprang into action. They had means and contacts, doctors they could call to help them find the best care for their son. And they were lucky. As Staglin puts it, “I had enough insight to realize something was wrong with me.”

Within three months, Staglin was on clozapine (which for decades has been the standard drug for treating schizophrenia; it hasn’t worked for Aaron). He was also in therapy, auditing classes at the University of California at Berkeley and volunteering at the Oakland Zoo. This multipronged approach was rare at the time, but it’s now considered the leading edge in treatment: coordinated specialty care (CSC). Based on years of research and a multisite National Institute of Mental Health study, CSC connects young people at the onset of psychosis with specialized wraparound services — like personalized medication management, psychotherapy, family education, work and education services, and case management — to help them keep their lives on track.

“Globally, we are aspiring to no more than three months of untreated psychosis, but ultimately we want to identify people who are at risk before onset and try to prevent the development of psychosis,” says Lisa Dixon, a psychiatrist who directs the Center for Practice Innovations at the New York State Psychiatric Institute and leads OnTrackNY, a coordinated specialty care program delivering early intervention services to young New Yorkers. “We don’t have a cure for schizophrenia, but [CSC is] helping people cope with what happens to them, not sending them back into failing situations.”

According to a 2018 study, there are about 270 specialty care programs in the United States, reaching just over 7,000 people. But, says Dixon, this is still not enough.

A similar treatment model, assertive community treatment (ACT), connects individuals with serious mental illness with multidisciplinary support teams that help them navigate treatment. While studies show that ACT has reduced hospitalizations and arrests and improved quality of life for people with the most severe symptoms of mental illness, only 13 percent of mental health facilities offer ACT services, according to a 2019 study.

Brandon Staglin offers a glimpse of just how powerful early intervention can be. After a year of treatment, he returned to Dartmouth, graduated with honors and landed a job in aerospace engineering. He had a relapse in his 20s but today lives in Napa, Calif., with his wife and runs One Mind, a family nonprofit dedicated to furthering brain research.

Though CSC may be the most exciting development in the field today, it won’t help people who have been living with schizophrenia for many years. And yet, while scientists have not figured out how to turn the Aarons of the world into the Brandons, Kenneth Dudek, senior adviser and former president of Fountain House, a leading community-based mental health model, has hope. “We shouldn’t be writing off 40-year-old people as dead. I have 50 examples that would counter that. Aaron should be here,” he says, referring to Fountain House, where people with schizophrenia and other serious mental illnesses gather, learn and work together in a sort of self-sufficient village. There are more than 300 programs based on Fountain House around the world. “If you offer the right kind of support over a long period of time, people will have much better lives. They can have a real life,” Dudek says. “Chances of Aaron getting back to where he was is maybe not possible, but he could have his own apartment, a job, a relationship — those could happen as long as he starts to deal with his illness.”

Anita and Aaron embrace during a visit.

The drive north from Bowie to Sykesville, Md., is unremarkable — long stretches of leafless trees, dirty snow banks and suburban strip malls. Anita has gotten used to the monotony. She makes this hour-long trek every weekend, usually with Pat, to visit Aaron. It’s late November 2018, and sleet slaps onto the windshield as Anita turns down the long, narrow road leading to the facility. Majestic brick buildings in varying states of decay rise up from the snowy fields. Scores of black vultures sit motionless on a fence. “This is the path to nothing,” Anita says.

A regional psychiatric facility operated by the state of Maryland, Springfield Hospital Center opened in 1896 and once housed 4,000 patients on its 1,300 acres. Today, it’s a relic of the deinstitutionalization movement. Only about half its buildings are in use.

Anita parks in front of an administrative building and heads inside, warning me that Aaron will probably look disheveled and could be in a bad mood. Sometimes their visits last an hour; other times, 10 minutes. When Aaron greets us in the entryway, she lets out a quiet gasp. He is wearing khaki pants and a long-sleeved blue V-neck shirt and sports a groomed beard and a freshly shaved head. He hasn’t looked this good in years, she muses later, wondering where those clothes came from and who helped him smarten up.

We gather around a table in a cramped room with white cinder-block walls; a woman from the hospital sits in the corner. “I brought the book,” Anita says, handing Aaron the “Superstar’s Keepsake” album. Aaron, then 41, hunches forward, flips open the cover and looks at the headlines.

“Backup QB becomes star.”

“Cougars in title game with Dumsch’s help.”

“Dumsch handles pressure.”

Aaron rubs his beard. “This was our team. I miss these guys! I haven’t seen ’em in years!” he exclaims. Apart from his trembling hands (a side effect of his medication), he seems more like a visitor than a patient, with his casual tone and jovial attitude. When I ask what it was like being crowned homecoming king — once in junior high and again in high school — a smile spreads across his face. “That never shoulda happened!” he blurts with excitement. “This is the weird thing about me. I go to all these different schools and they appoint me king. I never had enough notoriety to know who these people were! Crown someone else.”

He motions to the photo album, reading another headline aloud: “Peoria has the talent, but Sahuaro has the heart.”

“It’s just crazy, because I was such a good kid in high school. These articles back it up, and then what happened to me after?” He rests his elbows on the table. “I think if some of my teammates and coaches were to find out what happened to me, I think they’d be upset. There’s no way I should have gone through this.”

Aaron takes a long drink of water, then tosses an arm over the back of his chair and tilts toward the wall, exuding the effortless cool his friends remember him for. Living at Springfield isn’t all that bad, he says. He watches “Blue Bloods” and “Wahlburgers.” He gets chocolate doughnuts and sodas from the canteen. “You get into a routine. Would I be doing anything more important than this if I weren’t here? Not really.” Anita winces. “I just consider this an upscale jail. I don’t know,” he says, turning to his mother. “I’m not sure what’s gonna happen with me, Mom. I’m just sitting here.”

Anita leans forward. “Something will happen. Something always happens. We’ll just have to — ” She pauses. “Do the best we can.”

Aaron’s leg starts shaking. We’ve been talking for close to half an hour, and he’s growing irritable and rattled. As he sits there, cracking his empty plastic water bottle, I remember Anita telling me how he’ll transform before her eyes, going from seemingly normal to yelling obscenities and claiming she never loved him.

“When you get out, you just go to another program or another system. It’s like they recycle us here, like recycled water,” he says.

Anita tries changing the subject: “Do a lot of people have family members who come visit?”

“Not as much,” Aaron says.

“I’ve never seen another family, ever, since you’ve been here,” she says. “You’ve been here since March and we come every week.”

“That’s a trek for you, Mom.”

“I know,” she says. “We get to see the leaves change. The snow fall. I get to talk to you for a little bit.”

Aaron grows quiet. “This makes no sense,” he says, noticing for the first time that his mother is crying.

“It’s okay,” she whimpers. “We have to find a path for it to make sense. You’re a young man! Heck, I’m a young woman! I’m 65. We’ve got years ahead of us. We have to — I get emotional because I miss you.” She grabs his hand.

“You don’t think I don’t miss you and Dad?” he says.

“I know you do. I know you do.”

“This isn’t right,” Aaron says, his voice suddenly flat and monotone. He looks down at the table, then glares at the hospital staffer who’s been sitting in the corner, quietly, almost motionlessly, since the interview began. “These people are gonna suffer.”

“No! No, no!” Anita pleads, worrying that he might lash out.

“Just listen,” he says, turning to his mother. “Something is gonna happen to me.”

“Stop! Now you’re starting to get that way. Okay!” Anita says, each word more assertive than the next. “So, Aaron, let’s take the positive turn. Make the promise. Let’s do the right thing.”

Anita and Aaron at Springfield in November 2018. In the year to come, Aaron will move to three different wards but will remain at the hospital.

Anita has seen this switch flip before. Aaron will abruptly get upset or start ranting about some non sequitur, and she and Pat will leave early, driving home in silence, each suffering in their own way until one of them asks what’s for dinner or what they’ll do the next day, because life goes on. Now, with tears in her eyes, she looks at Aaron and implores him to calm down.

“It doesn’t matter, Mom.”

“Aaron!” she says firmly. “Somehow we got off track, okay?” She lets out a forceful sigh.

It’s clear the interview is over. A moment later, Aaron turns to me and says in a tone of voice I haven’t heard since the start of our interview, “Thank you, ma’am. Good luck to you, ma’am.” Then he and Anita stand up and fall into an embrace. As she whispers into his ear, he closes his eyes and listens, burying his head in her arms. After a few minutes, he puts on his coat and turns to leave.

In the year to come, Aaron will move to three different wards, but he won’t leave, and his condition will remain the same. Meanwhile, Anita will focus on learning “to love him better,” as she put it to me a few months ago. “My goals may not have been reached for what I thought they’d be, like a cure or a family for him or a home, but the goal for him now is that he’s safe. He’ll never be on the streets. We’ve padded the path so he can function when we are not here.” It took Aaron getting into the criminal-justice system for this to happen, but at least the family now has a plan for the future — and her daughters, Anita notes, “will not have to assume that burden.”

For now, though, on this fall day at Springfield, Anita watches Aaron walk out, then collapses back in her chair, face wet with tears. “It’s an emotional roller coaster all the time,” she says. “You look at your children, and you never dream this is going to be their fate.” She shakes her head. “Never.”

Abigail Jones is a writer in New York City.

Photo editing by Dudley M. Brooks. Design by Michael Johnson.

Photo illustration by Slate. Photo by Thinkstock.       

Association For The Chronically Mentally Ill (ACMI) believes there is sea change going on around mental illness and what has worked and what has areas for improvement.  Among the most promising changes is that SAMSHA and mental health “think tanks” as well as community-based organizations like ACMI are discussing the need for additional research on biomedical aspects of serious mental illness rather than just focusing on “stigma” or general mental health or “wellness.” Not enough research dollars are targeted to investigate the root causes of mental illness and effective treatment modalities from medication to effective interventions in housing and social supports. People living with serious mental illness like schizo-affective disorder are trying to survive this devastating biological brain illness. Often without adequate support.

ACMI is encouraged by the proceedings of the White House Mental Health Summit (Dec 2019) which will provide additional funding dollars designated towards research on Mental Illness research.

 Some advocates believe that  “mental health problems tend to be under-researched, undertreated, and over-stigmatized.

We need to start focusing on treatment over punishment. Research that will lead to better treatment and outcomes – measured by changes in jail and prison incarceration rates, number and length of hospitalizations, and treatment compliance over a sustained period of time. Mental health treatments remain largely inaccessible to many, especially those from lower socio-economic or disadvantaged groups. These families often lack advocates for their ill family member and can not afford private attorneys to make the system “bend” to become more patient-focused. One estimate by the Epidemiologic Catchment Area Survey reported that 40 percent of adults with severe mental illness did not receive any psychiatric care within a one-year period. Many individuals will continue to suffer from serious mental illness until we can reduce barriers to treatment access. This is a tragedy — and a likely reason for the recent tragedies in which untreated individuals living with serious mental illness engaged in acts of violence against others in the community. The National Institutes of Mental Health (NIMH), the nation’s largest funder of mental health research, has seen flat budgets since 2003, and currently funds less than 20 percent of the proposed research trials it receives. This tight funding environment discourages new researchers from entering the mental health arena and slows research progress.

Stigma is important in the general conversation to ensure parents, teachers, physicians and other primary caregivers identify the early signs of mental illness; most are present before the late teenage years.

But, importantly, in Thomas R. Insel, M.D. director of National Institute of Mental Illness directors’ message he indicates the real need for basic research.

This is promising!

If we want to offer the most effective mental health treatments, we need cutting-edge research to test those treatments and understand how they work.

We think it is beneficial for all families to submit comments asking for more research dollars target research for serious mental illness.

CALL TO ACTION!

You can submit feedback online via the NIMH request for information page, or mail your comments to:

NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the Treatment Advocacy Center- (December 18, 2019) The National Institute of Mental Health (NIMH) has a history of failing to prioritize serious mental illness in its research. Unfortunately, their recently-released five-year strategic plan draft signals their intention to continue to ignore those with the most impairing disorders.

Despite seeking public comment, the NIMH’s plan, even by the standards of federal reports, is almost unreadable. While the issues are complicated, the explanation of why they are vital shouldn’t be. However, it is not written in a way that is easy to understand or make sense of. For example, Strategy 3.3.C on page 28 reads “Enhancing the practical relevance of effectiveness research via deployment focused, hybrid effectiveness-implementation studies.”

Spearheaded by our founder, Dr. E. Fuller Torrey, the Treatment Advocacy Center has put together a comprehensive analysis of the five-year strategic plan, highlighting how it would fail those with severe mental illness. We identify sixteen concrete examples of research initiatives the NIMH should be pursuing today, initiatives that could help people with serious mental illness recover and live better lives.

Yesterday, the Treatment Advocacy Center submitted our public comment to the NIMH. However, we urge you to submit your own here. Use our comments, but also share your story of how the decisions of NIMH affect you and your loved ones. These stories are vital to help NIMH understand why their proposed priorities are misplaced.

Here are some points to consider:

  • The report fails to reflect the urgency of our national mental health crisis: As Dr. Torrey summarized, “Overall, I would say that this report is promising for people who plan to be affected with a serious mental illness in 2050 or beyond, but for anyone who is currently affected, the report offers no hope. I personally find this unacceptable and inexcusable.”
  • Where are the people who are experiencing the consequences of our failed mental health system? Except for one paragraph on the increasing national suicide rate, there is no indication whatsoever that mental health services for individuals with serious mental illnesses are an increasing public disaster. There is no mention of homelessness, criminalization of mental illness, the fact that emergency rooms are overrun with people with mental illness, or the burden of the failures of the mental health system on law enforcement.
  • Continued misplaced and unbalanced priorities: The strategic plan is strongly weighted towards basic brain science, with a continued strong emphasis on genetic research. It ignores the fact that the genetic research to date has been remarkably unproductive and likely to continue to be so, as described in a paper by Dr. Torrey and Dr. Robert Yolken published in Psychiatry Research in August.

You can submit feedback online via the NIMH request for information page, or mail your comments to: NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the National Institute of Mental Health Strategic Plan- here are the four priority areas.

The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health

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