Bedlam- Review of Movie: Airs on April 13th, PBS

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

Subscribe to our newsletter

Schizophrenia- Signs & Symptoms from a Family Perspective

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)

Screening of Bedlam- March 3rd 2020 Phoenix, AZ

by Association for the Chronically Mentally Ill

Los Angeles financial district skyscrapers are seen behind a homeless tent encampment, September 23, 2015 in downtown Los Angeles. Los Angeles officials declared the homeless situation a public emergency. making Los Angeles the first city in the nation to take such a drastic step in response to its mounting problem with street dwellers. ROBYN BECK/AFP/Getty Images

Date and Time

Tue, March 3, 2020

6:30 PM – 9:30 PM MST

Location:

Harkins Theatres North Valley 16

3420 East Bell Road

Phoenix, AZ 85032

Description

THEATRE OPENS AT 6:30 pm

SCREENING BEGINS 7 pm

PANEL DISCUSSION Post Show

Description:

Ken Rosenberg becomes a filmmaker to show the national health crisis mental illness has become. The film delves into what is happening in LA as Rosenberg follows people suffering from bipolar disorder, schizophrenia, and other chronic conditions. The people shown repeatedly cross the paths of ER doctors and nurses, police officers, lawyers, and prison guards, receiving inadequate, little or no care. Rosenberg depicts the gritty view the mentally ill encounter in Los Angeles County.

Buy tickets $20.00

https://www.eventbrite.com/e/screening-of-bedlam-tickets-93176853477

What Schizophrenia Does to Families

(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

Subscribe to our newsletter

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.

More Dollars Dedicated for Serious Mental Illness Research is Needed

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

Subscribe to our newsletter

Bedlam- An Intimate Journey Into America’s Mental Health Crisis Review

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

 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.

 Cheryl Roberts, executive director of the Greenburger Center for Social and Criminal Justice, says “Asylums never went away; they just grew into two varieties: posh for the wealthy (in the form of a handful of fancy $100,000-plus a year mental institutions) and prisons for the poor.”

Jonathan Sherin, MD, PhD, director of Los Angeles County Department of Mental Health, doesn’t mince words. He says we did not get rid of asylums in Los Angeles in the 1960s with deinstitutionalization: we just substituted the local asylum for an ‘indoor” one called the Los Angeles County jail and an “outdoor” asylum called skid row. John Snook, director of the Treatment Advocacy Center, agreed that the dismantling of the asylum was really “trans-institutionalization”- transferring the fate of patients from asylums to streets and prisons. We still hospitalize people, they are “micro-hospitalizations”, says Snook, referring to the average length of stay of three to five days. “The state of California is a canary in the coal mine from day one,” he said, because it emptied out its hospitals early. In 1975, the city’s “containment” policy squeezed people with substance abuse disorders, mental illness, and other disabilities into a fifty-block radius skid row- helping it become what a Los Angeles Times reporter called “a dumping ground for hospitals, prisons, and other cities to get rid of people with nowhere else to go.

According to Dr. Edwin Fuller Torrey (an American psychiatrist and schizophrenia researcher. He is the Associate Director of Research at the Stanley Medical Research Institute and Founder of the Treatment Advocacy Center), the United States currently has just 2 to 3 percent of the psychiatric treatment beds that we had sixty years ago: “We have so few beds available for people with mental illness that there’s nowhere to put them.”  Because emergency rooms are legally required to treat anyone who comes through the door, people with serious mental illness (SMI) often wind up staying there for days or even weeks at a time waiting for a psychiatric treatment bed. We see that all across the country.

What Dr. Sherin, Snook, and many other policy experts hold partly responsible for this mess is the IMD (Institutes for Mental Diseases) exclusion rule, enacted in 1965 as part of the Medicaid and Medicare legislation. “The IMD exclusion explicitly prohibited Medicaid from paying for patient care in state or private hospitals that specialize in mental health care. It prohibits federal Medicaid payments for services delivered to individuals aged twenty-two to sixty-four years residing in IMDs, defined as “hospitals, nursing homes, or other institutions with more than sixteen beds that are primarily engaged in providing diagnosis, treatment, or care of persons with ‘mental diseases’ other than dementia or intellectual disabilities. To repeat- no mental hospital with more than sixteen beds.”

ACMI is encouraged by some recent actions:

·         One sign that America is waking up to our mental health crisis is the 21st Century Cures Act of 2016, which provided additional research and treatment reforms.

·         The creation of a mental health czar position in the Department of Health and Human Services now occupied by Dr. Elinore McCance-Katz, MD, Ph.D.

·         Dr. Elinore McCance-Katz, MD, PhD. has returned to SAMSHA with a priority to address Serious Mental Illness, something that had not been a priority at SAMSHA for years.

·         SAMSHA focusing on evidence-based practices.

·         The recent White House Mental Illness summit (see links below)

·         Increased discussion about changes to the IMD exclusion

·         The rise of celebrity candor about their personal experiences with mental illness.

In Arizona we are fortunate to have strong laws to help persons with SMI that do not have the insight to understand they are ill. We are often contacted by families from other states that do not have our strong laws.

Arizona will also lead the nation is providing a new level of care that is less restrictive than a level 1 psychiatric hospital, but more than community living. This level of care – secure residential treatment – will be a closely monitored program that will assist the chronically mentally ill in their recovery.

Subscribe to our newsletter

 Below please find information mentioned in the Summit along with full video coverage and a transcript of President Donald J. Trump’s remarks.

ADDITIONAL INFORMATION

U.S. Department of Housing & Urban Development (HUD)

Office of National Drug Control Policy (ONDCP)

  • National Drug Control Policy Strategy: Establishes the Administration’s priorities for addressing the challenge of drug trafficking and use
  • Federal Rural Resources Guide: A listing of Federal programs that can be used to address substance use disorder and opioid misuse in rural communities
  • Community Assessment Tool: Provides a snapshot of county-by-county data about drug overdose deaths and socio-economic conditions in a county to help leaders build grassroots solutions for prevention, treatment and recovery
  • School Resource Guide: Guide for teachers, administrators and staff about resources available to help educate and protect students from substance misuse
  • Treatment Services Locator: Mentioned in the Federal Leaders Perspective Panel
  • Google Drug Takeback: Mentioned in the Federal Leaders Perspective Panel

U.S. Department of Justice (DOJ)

 

Jail is not the right place for many mentally ill persons in Arizona

While some folks that suffer from mental illness may also suffer from personality disorders or violent tendencies, most persons with mental illness are not violent perpetrators when treated appropriately. For individuals that have a mental illness but do not have violent or personality disorder which predispose them to violent tendencies, they should not be in jail or prison.

It is not unreasonable to have persons with mental illness that continue to be violent even when appropriately treated that they may end up in a psychiatric unit of a jail/prison.

For those persons with serious mental illness (SMI) that are imprisoned, it is inhumane to keep them in solitary confinement. There is an effort in Arizona to do more reach in and preparation for services when released. We are hopeful that these efforts will provide effective in reducing recidivism and achieving better outcomes for individuals exiting jail/prison.But Persons with SMI tend to have longer stays in jails and prisons and to be confined in a Special Management Unit with only a few hours a day out of their cell, no real treatment for their SMI, and limited recreational activity. Sometimes, those with SMI are placed in isolation cells. It is ACMI’s position that jails or prisons are wrong placements for this population. As discussed in the article below, “Confining people with serious mental illness (often shortened to SMI) in solitary jailhouse cells has been repeatedly identified by correctional officials, advocates, and psychiatrists as detrimental and cruel.”

Even under the best conditions, the jail/prison environment is not therapeutic in nature but punitive in nature. 

 Let’s look at the purpose of Prisons and jails. 

Prisons: According to the “prisons’ theory,” also referred to as deterrence, the theory claims that the primary purpose of prisons is to be so harsh and terrifying that they deter people from committing crimes out of fear of going to prison.  Other reasons stated for the need for prisons are four major purposes. These purposes are retribution, incapacitation, deterrence, and rehabilitation. Retribution means punishment for crimes against society. Depriving criminals of their freedom is a way of making them pay a debt to society for their crimes.

Jails: By the 19th century, prisons were being built for the sole purpose of housing inmates. They were intended to deter people from committing crimes. People who were found guilty of various crimes would be sent to these penitentiaries and stripped of their personal freedoms.

A major use of modern jails is what is often referred to as pretrial detention. In other words, jails receive accused persons pending arraignment and hold them awaiting trial, conviction, or sentencing. More than half of jail inmates are accused of crimes and are awaiting trial. The average time between arrest and sentencing is around six months. Jails also readmit probation and parole violators and absconders, holding them for judicial hearings. The major purpose of pretrial detention is not to punish offenders, but to protect the public and ensure the appearance of accused persons at trial.

Jails in some jurisdictions are responsible for transferring and transporting inmates to federal, state, or other authorities. Jails are also tasked with holding mentally ill persons pending their transfer to suitable mental health facilities where beds are often unavailable. Jails also hold people for a variety of government purposes; they hold individuals wanted by the armed forces, for protective custody of individuals who may not be safe in the community, for those found in contempt of court, and witnesses for the courts. Jails often hold state and federal inmates due to overcrowding in prison facilities. Jails are commonly tasked with community-based sanctions, such as work details engaged in public services. https://courses.lumenlearning.com/atd-bmcc-criminaljustice/chapter/section-6-1-jails/

According the Greenburger Center for Social and Criminal Justice: http://www.greenburgercenter.org/facts :

  • Nationwide in America, people suffering from mental illness are 10 times more likely to be in jail or prison than in a psychiatric hospital.
  • People with mental illness are frequent fliers – 90% of people suffering with mental illness are repeat offenders, with 31% having been incarcerated 10 or more times
  • People with mental illness cost more while incarcerated. In Broward County, Florida, it costs $80 per day to house a person without mental illness, but $130 a day for someone with mental illness.
  • People with mental illness stay longer- In New York’s Riker’s Island jail, the average stay for an incarcerated person is 42 days, with mental illness it is 215 days.
  • People with mental illness are difficult to manage- In Wisconsin, a 2010 audit of three state prisons reported that between 50 and 70% of the prisoners in isolation were mentally ill.
  • People with mental illness are Most likely to commit suicide – In Washington State the prevalence of mental illness among incarcerated people who attempted suicide was 77% compared with 15% among the general population.
  • In 2012, American prisons and jails housed and estimated 356,268 people with severe mental illness.

Does it make sense to send someone that may be unable to make right decisions based on their mental illness to jail or prison? 

Subscribe to our newsletter


Sick & alone: Jailing the mentally ill in Arizona

Terry Greene Sterling Arizona Center for Investigative Reporting

Most of America’s county jails escape lawsuits seeking reforms for inmates with serious mental illness. Now Arizona’s Cochise County has joined hundreds of other small counties innovating ways to keep people with serious mental illness out of their jails. But it comes too late for Adrian Perez, who has spent the past 13 years cycling in and out of jail, and solitary confinement, which only makes him sicker.

Adrian Perez hobbles into the courtroom in leg chains and jail slippers. He sits. He pokes at his black beard. He rocks.

He’s 34 years old, and he knows he has schizophrenia. He knows he hears voices no one else can hear.

He wants to get better but he doesn’t know how to get better.

Instead, he cycles in and out of the Cochise County justice system. He’s been locked up in the county jail at least 16 times in 13 years. He’s been charged with misdemeanors like shoplifting or disturbing the peace, which are handled in justice court, and he’s also been charged with two felonies in Cochise County Superior Court. One case, in which he took a neighbor’s truck for a joyride, was dropped because of Adrian’s mental illness. Today he’s facing a second felony charge for allegedly stealing an auto part.

This time around, he’s been isolated in solitary confinement in the jail for 23 hours a day for close to two months. There is no doubt, his family says, that solitary is making Adrian sicker.

Confining people with serious mental illness (often shortened to SMI) in jailhouse solitary cells has been repeatedly identified by correctional officials, advocates and psychiatrists as detrimental and cruel. But because there’s no aggregate reporting system in place no one knows exactly how many people with mental illness are confined to jailhouse solitary cells – or for how long. And in many county jails the practice persists.

Adrian welcomes court hearings because they get him out of solitary. On this September morning, Adrian is in Cochise County Superior Court, charged with stealing a device that measures the working speed of an engine, called a tachometer, from an auto parts store. The tachometer cost $112.29. Adrian sold it for five bucks to buy cigarettes. He is charged with trafficking in stolen property.

Because Adrian has been found incompetent by psychiatrists to stand trial due to his mental illness, Judge Tim Dickerson might later drop the auto part case. But first the lawyers have to file papers and the judge has to issue rulings. That could take weeks.

The art-deco style court building is nearly a century old. The courtroom has tall, geometric windows and rows of small, uncomfortable chairs. Adrian stands behind a wooden podium with his public defender and addresses the judge.

“I want to get help as soon as I can,” Adrian says.

A white-bearded bailiff ushers Adrian out of the courtroom. Adrian’s accustomed to walking in shackles, but he’s lost a lot of weight lately and yanks up his baggy red-and-white-striped pants with his cuffed hands, which gives him a lopsided gait.

In a few hours, he’ll be back in solitary at the Cochise County jail, getting sicker.

Small County Jails A Dumping Ground

To report Adrian’s story, the Arizona Center for Investigative Reporting examined hundreds of pages of court and police records and reviewed government reports and research papers from correctional groups and nonprofits that advocate for people with mental illness who end up in jail. The Center attended community criminal justice coalition meetings, reported on proceedings in the Cochise County jail and Cochise County Superior Court, and interviewed Adrian, his family, his jailers, county and state health professionals, advocates for people with mental illness, psychiatrists, lawyers and judges.

Despite decades of reform efforts on behalf of people with SMI, small county jails and their solitary cells remain a neglected dumping ground for this vulnerable group of Americans.

Few want them there. Not their families. Not their jailers. Not the lawyers who have filed class action lawsuits throughout the nation intended to reform prisons and jails for people with SMI. Not the state legislators scattered across the country who have passed laws limiting solitary confinement. Not the advocates, judges, lawyers, behavioral health providers and county correctional officials who are trying to figure out new ways to keep people with SMI out of county jails.

Expensive reform efforts – class action lawsuits, court diversion programs, state laws – often aim to fix the problem after, not before, the person with mental illness has entered the criminal justice system. And the reforms often target prisons while neglecting the large numbers of people with mental illness confined in smaller American jails.

While people with SMI make up about 4.6 percent of the nation’s adult population, they make up about 20 to 26 percent of jailhouse inmates. They’re booked into jails about 2 million times a year, stay longer, and are more apt to return to jail.

The average jail stay is less than a month. But inmates with SMI who live in poverty and can’t pay their bail, like Adrian, can stay for several months or even a year. And if they can’t adjust to the general jailhouse population, if they are at risk of hurting themselves or other inmates, many end up in solitary confinement, where their SMI often worsens.

Sponsorships available
Support TucsonSentinel.com & let thousands of daily readers know
your business cares about creating a HEALTHIER, MORE INFORMED Tucson

“The largest behavioral center in the county is my jail and that is common in most rural communities in the United States,” Cochise County Sheriff Mark Dannels says during an interview in the sheriff’s substation in Sierra Vista in September.

The population of Cochise County is about 126,770, scattered across 6,000 or so square miles of high desert and sky island mountains. Mental health services are hard to access in remote rural areas – so much so that in a recent health assessment, county residents singled out mental health and substance abuse treatment as the top health priority.

The southern stretch of Cochise County flanks the Mexican border, and Dannels is known nationally as an immigration hardliner. He’s a stocky Midwesterner, 55 years old, who settled in Cochise County after a stint in the military.

“Are we helping them or hurting them? I will tell you right now we’re hurting them.” — Cochise County Sheriff Mark Dannels

Dannels is the first to admit jail is no place for a person with mental illness. He’s trying to collaborate with county mental health advocates, the courts and providers to come up with ways to keep people with SMI out of his jails.

These are “severe mental health folks,” Dannels says. “Are we helping them or hurting them? I will tell you right now we’re hurting them.”

He rubs his forehead. “But what else do we do?”

“In the general population, they’re assaulted or picked on,” he says. “These are the severe ones that take their clothes off, that are smearing feces on their bodies, I don’t have a place to put them.”

Solitary was part of a well-intended reform movement. American jail and prison administrators began replacing corporal punishment with solitary confinement more than a century ago. It sounded so much kinder. But it didn’t take long to see the harmful impact of solitary on inmates, especially inmates with serious mental illness.

The federal Bureau of Prisons claims to have limited the use of solitary in its prisons. But the Office of the Inspector General for the U.S. Department of Justice found in 2017 that some inmates with mental illness remained in solitary cells.

Some state prisons, including those run by the Arizona Department of Corrections, have been forced by class action lawsuits to limit solitary for people with SMI.

Jeffrey Metzner, a forensic psychiatrist who teaches at the University of Colorado School of Medicine in Denver, and a nationally recognized expert on correctional mental health systems, says isolation often exacerbates serious mental illness. It reinforces abnormal social interactions, increases social withdrawal, and heightens the risk of suicide, he says. In the “worst places,” inmates have “so little control of anything,” he says, they smear or throw their feces so detention officers will “feel as helpless and angry as they feel.”

Public policy change in this arena traditionally comes from litigation, but that’s slowly changing as states start to limit the use of solitary. Most efforts focus on state prisons, and largely ignore jails. Eight states this year passed laws limiting solitary confinement. Arizona is not one of them. In 2015, the American Civil Liberties Union backed a bill requiring Arizona prisons to keep records on the solitary population. That bill died. And this year, a bill seeking to limit solitary confinement of pregnant and postpartum women prisoners also failed.

While policymakers debate solitary, Adrian keeps ending up there.

“I don’t know why,” Adrian says. “I don’t know why they do it.”

A Devil Inside Him

Once, a horse kicked Adrian Perez in the head. He was visiting his grandparents on their ranch in the Mexican state of Chihuahua, and the horse spooked at something and ran right over Adrian, then a small boy. After his grandmother wiped off the blood, Adrian seemed fine.

Adrian’s brother Richy, only a year older than Adrian, took it harder than anyone. Richy felt obligated as the big brother in his Mexican-American family to take care of Adrian.

Concerned about keeping quality reporting alive in Tucson?


A metro area of nearly 1 million deserves a vital & sustainable source of news that’s independent and locally run.
Support TucsonSentinel.com with a contribution today!

The boys’ father, Blas, was a Mexican farmworker who settled in eastern Cochise County after obtaining legal permanent residency in the United States. Their mother, Blanca, mostly raised the four kids, Richy, Adrian, Eric and Ana.

Blas bought land in Winchester Heights, a remote farmworker community about 15 miles outside of Willcox. On weekends, the boys mixed cement and carried construction blocks as their father built the family a three-bedroom house. The family moved in after Blanca was diagnosed with terminal lung cancer. As the eldest, Richy promised his mother he’d always take care of his siblings.

After Blanca’s death, Adrian seemed more withdrawn. When his dad told him to straighten his room or clean the yard or do his homework, Adrian either talked back or broke things.

Looking back on it, Eric says, the family “didn’t understand mental illness very well.”

Richy joined the Army National Guard, but took care of Ana and Eric when his father and Adrian moved briefly to El Paso. In Texas, Adrian was certified as a bilingual electrical assistant, and Blas went to trucking school in hopes of earning more money.

A few months later, in 2004, Blas died in a trucking accident.

Richy quit the National Guard and worked in the fields near the house he had inherited from his father. Richy was 21, old enough, he thought, to take full responsibility for Eric, 14, and Ana, 12. Adrian tried to help but couldn’t hold down a job for long.

Adrian’s mental illness remained undiagnosed for years. None of the siblings remember when, exactly, Adrian started hearing voices. One insulting voice, which Adrian called “Tony,” made home life even more chaotic. Adrian episodically screamed at Tony while batting at the air and throwing things.

Ana thought Adrian had a devil inside him.

The undiagnosed schizophrenia likely caused Adrian to chase four people up and down a Willcox street in 2006. No one was hurt, but someone called the cops, who tackled Adrian, shackling his legs and cuffing his wrists. In the back seat of the patrol car, Adrian panicked, slamming his head repeatedly against the door and bars in front of the window.The officers turned on the siren and lights and hightailed it to a small county jail annex in Willcox. When they forced Adrian into a restraint chair, he fought even harder, breaking a staffer’s prescription glasses.

Adrian pleaded guilty to criminal damage and resisting arrest, promising to pay $135 for the broken glasses. And he spent three months in jail, in part because he couldn’t pay his $3,000 bail. He didn’t pay his mounting justice court fines, and failed to appear in court to explain why.

When Adrian came home from jail, he often walked 15 miles from the house in Winchester Heights to Willcox. If Adrian didn’t return home, Richy says, he automatically called the Cochise County Jail, figuring his brother was there.

One day in 2008, Adrian walked into a neighbor’s yard, and, right in front of him, drove away in the neighbor’s red Nissan pickup. Sheriff’s deputies arrested Adrian on a felony charge – knowingly taking unauthorized control over a means of transportation – and a misdemeanor, criminal damage.

In a way, it’s the best thing that could have happened, because it led to his schizophrenia diagnosis. Adrian’s public defender requested a so-called “Rule 11” psychiatric examination to see if Adrian was mentally competent to stand trial for the felony charge in Cochise County Superior Court. He wasn’t, a psychiatrist said. He smiled inappropriately and couldn’t communicate in any meaningful way. It was suggestive of psychosis.

A judge sent Adrian to the Arizona State Hospital in Phoenix to see if he could be “restored to competency” in order to stand trial for taking the red Nissan. This is a common practice in both federal and state courts. Advocates say it benefits the criminal justice system, not the person with mental illness, who can spend six months being “restored” while not getting appropriate, sustainable mental health care.

Still, Adrian finally had a diagnosis – “Schizophrenia, Undifferentiated Type” – at least three years after he showed symptoms of the illness. Richy, who’d long wondered if the horse kick had caused Adrian’s bizarre behavior, began to realize his brother had a complicated condition likely spurred by genetic and environmental factors.

Adrian understood he had schizophrenia, but he thought the doctors could fix it.

Arizona State Hospital psychiatrists tried different combinations and doses of medication to treat Adrian’s psychosis. Even so, staffers noted Adrian was often “confused and internally preoccupied.” After six months, the doctors could not restore Adrian to competency.

A Cochise County Superior Court judge dropped Adrian’s 2008 felony charge for taking the neighbor’s truck on a joyride.

Driving 90 Miles For Treatment

Adrian’s siblings say they often tried but couldn’t always get him necessary mental health services.

Because Adrian was poor and lived with a serious mental illness, he was entitled to community-based mental healthcare paid for by Arizona’s Medicaid agency, AHCCCS. It should have included, among other things, psychiatrists, meds, counseling, caseworkers, therapy, skills training, transportation, supported employment, personal care services and family and peer support.

That’s the sort of “community based mental health care” that a young lawyer named Chick Arnold envisioned for people with SMI when he filed a class action lawsuit against the state of Arizona and Maricopa County in 1981. Arnold v. Sarn was settled in 2014, and helped force the state of Arizona to provide comprehensive community mental health care to people living with SMI.

But mental health experts, family members and advocates say the care is difficult to access in rural Arizona – including Cochise County.

When Arnold hears about Adrian’s case, he calls it “dreadful.”

He’s pushing for more oversight to ensure people with SMI get the care they are entitled to.

Adrian and others like him in rural counties can run into frustrating roadblocks. In Cochise County, public transportation is limited. The county currently has three full time practicing psychiatrists – and they’re all in Sierra Vista. People with SMI sometimes get treated by psychiatrists who don’t reside in the county but provide “telemedicine” via video screen, or by onsite nurse practitioners. The county has two in-patient mental health treatment centers with a total of 38 beds. Behavioral health providers change titles and alliances, making it difficult for people with SMI to access help.

“We go through [behavioral health] providers down here kinda like disposable napkins. They come and go, come and go,” Sheriff Dannels says.

Because Willcox, a railroad and cattle ranching town, only has about 3,500 residents and limited mental health services, Eric and Richy have driven Adrian to appointments in places as far away as Safford (a 90-mile round trip, in Graham County) and Benson (a 68-mile round trip).

When Adrian was in jail, he got his antipsychotic meds from the Cochise County Health Department. When he was living at home, Adrian was back on AHCCCS. Sometimes, Adrian ran out of medicine. Caseworkers came and went. And Richy says Adrian was never offered job training or supported employment. Adrian wanted to work in the fields, Richy says, but no one would hire a guy with schizophrenia.

Eventually, Ana and Eric left home. Richy stayed – and struggled. He worked. He drank. He worried about Adrian.

Richy and Adrian built a small shed in the backyard. Adrian called it his “cabin” and spent hours in it, taking apart electrical gadgets and listening to Cypress Hill belt out songs like “Insane in the Brain.”

For a while, Adrian was under court order to get “Title 36” outpatient mental health treatment. Usually, this type of court-ordered treatment lasts a year. Adrian was compliant, getting AHCCCS-funded meds and therapy in nearby Willcox, and was staying out of jail.

Then Richy checked into a six-month rehab program in September 2018. A social worker placed Adrian in a group home in Douglas, but he ran away. He began living on Willcox streets. He was not complying with the court order to get outpatient treatment.

Three months later, Adrian allegedly stole two Steel Reserve beers and a bottle of Kung Fu Girl wine from the Safeway in Willcox. He sat outside of the grocery store drinking wine and yelling at customers. A Willcox police officer arrested Adrian on 10 misdemeanor charges – including two counts of disorderly conduct, criminal nuisance, littering, shoplifting, criminal damage, obstruction of government operations, drug paraphernalia use (the cop found a meth pipe nearby), escape in the second degree and consumption of liquor in public.

When police went through Adrian’s backpack, they discovered he’d stolen food and a pair of socks from a nearby store. And he’d swiped a medical alert display and two surgical prep packs from the local hospital.

Adrian pleaded guilty in Willcox Justice Court to shoplifting and agreed to pay $676 in restitution. Then he was released from the Cochise County Jail to Sonora Behavioral Health Hospital in Tucson to continue mental health treatment.

But for reasons that aren’t clear in the records, Adrian left Sonora Behavioral Health about a month later. That’s when he allegedly stole the tachometer and got charged with the felony. Adrian returned to jail. He couldn’t pay his $3,500 bail as he awaited a resolution of his auto part theft case.

Adrian stayed in jail for six months. He was released in July for yet another court ordered stay at an inpatient mental health facility – this time at Community Bridges in Benson. This time, Adrian had agreed to get treatment as part of a “mental health diversion program” that would spring him from jail. But Adrian ran away, the facility reported. It was the second time that he’d refused court ordered treatment.

Adrian was on the streets for a few days, then made his way back to Richy, who was fresh out of rehab. The brothers lived together at home for about a week. But because Adrian had violated his agreement with the court to get mental health treatment at Community Bridges, a deputy took him back to jail – and solitary.

The New Asylums

People with mental illness have ended up in American jails since the mid-twentieth century, when a nation-wide “deinstitutionalization” of asylums began. Those asylums had been created in the early nineteenth century, in part to rescue people with mental illness from abusive jails and prisons, former Washington Post reporter Pete Early writes in his 2006 book, Crazy.

For months, Early, who has a son with SMI and has become an advocate for people with mental illness, embedded himself in the county jail in Miami, Florida. “Our jails and prisons have become our new asylums because there is nowhere else for the mentally ill to go,” he concluded.

The Cochise County Jail, a complex of brown and white buildings topped with razor wire, sits at the end of a road that winds past black cattle grazing beneath a cluster of thorny desert mesquite trees.

Each time Adrian goes to jail, he enters the booking area. He is patted down. He changes into his jail uniform in a small adjoining room with benches and a toilet. Once dressed, he puts his hands on the wall, kneels on a bench, and allows his restraints to be put on. Then he is photographed, fingerprinted, and a white medical bracelet with a computer code is attached to his wrist. He generally starts out in the general population. But his behavior, or the behavior of other inmates who torment people with SMI, lands him in solitary, the only place his jailers say they can keep him safe.

The jail was built back in the early 1980s, and is cramped and poorly designed. Detention officers are forced to do their paperwork in the hallway. The jail is loud, too. During a recent tour, Kenny Bradshaw, the jail commander, says staffers call the clang of slamming metal doors “thunder.”

The plumbing is faulty. The elevated inmate exercise courtyard leaks rainwater into the jailhouse. The inmate commissary is no bigger than a closet. And the bleak special handling unit with six solitary cells was designed to punish the most dangerous inmates, not people like Adrian who can’t think straight.

The jail tour doesn’t include the solitary pod. Bradshaw says the pod smells of feces and a guy in one of the pods is in a highly agitated state. A visitor would only make him worse.

There is a tiny room where a detention officer monitors real-time videos of the solitary cells, and one screen shows Adrian. He’s moved his mattress against his door and is lying on it in a fetal position.

“A lot of our maximum security cells were used for very dangerous combative assaultive inmates,” Bradshaw says. “We can’t use those cells for those kinds of inmates anymore. A lot of time we have to put mental health inmates in there because they’re so disabled they can’t survive or be put in general population…I don’t think we’re doing them any good by doing that.”

It doesn’t help that the family of an inmate with SMI who killed himself in 2018 sued Dannels and the county for the inmate’s alleged wrongful death. The inmate had been in solitary, but Joel Robbins, his attorney, is unsure whether he was in solitary when he died. (Dannels and the county haven’t responded to the lawsuit, filed at Cochise County Court in September.)

The jail itself can house up to 250 people. These days, about 30-50 inmates on any given day in the jail “really need psych services,” Bradshaw says. The Cochise County Health Department provides in-jail mental health treatment, including meds prescribed by a psychiatrist via a video monitor. But even the sickest inmates have the right to refuse treatment unless the court orders it.

Reaching Out

Because lawsuits and state laws haven’t been more effective in limiting the numbers of seriously mentally ill inmates in jails, counties are trying to figure out solutions themselves.

Of the nation’s 3,141 counties and county equivalents, 507 counties, including all of Arizona’s counties, have joined Stepping Up, a national initiative that aims to keep people with SMI out of jail. The initiative, set up by the American Psychiatric Association Foundation, the National Association of Counties and the Justice Center of the Council of State Governments, encourages data collection, stakeholder collaboration and measuring results.

Pretty Yavapai County in north central Arizona, where almost a quarter million residents share more than 800 square miles of grasslands, mountains and yellow pines, has come up with a model program with measurable results.

In 2015, Sheriff Scott Mascher and his chief deputy, David Rhodes, decided to come up with a way to keep inmates with SMI out of the county jail.

They knew they couldn’t do it alone. They huddled with health care providers, other law enforcement agencies, court and housing officials, social workers and family members, among others. Today, the Yavapai Justice and Mental Health Coalition focuses on community-based treatment aimed to keep people with mental illness out of jail, and, if that isn’t possible, to collaborate on in-jail and post-jail mental health treatment plans to reduce recidivism. But it’s expensive.

By 2018, the sheriff and his team had hustled together a total of about $2 million from the Arizona Legislature, the Department of Justice and the Yavapai County Attorney’s Office for their Reach Out Initiative. That should last three years.

Northern Arizona University measured 2018 results.The university reported 1,104 people were diverted from entering Yavapai County jail. Bookings declined by nearly 10 percent.

But in Cochise County, collaboration hasn’t been as successful. Superior Court Judge Laura Cardinal, who sees people with mental illness cycle in and out of her courtroom, jail, and mental health evaluations, blames it on “bureaucratic siloing.”

“Everyone agrees we need to develop solutions,” Dannels, the Cochise County sheriff, writes in a text message to the Arizona Center for Investigative Reporting. He thinks he’s got one – taking over a section of the nearly empty Cochise County Juvenile Detention Center. He hopes to move jail inmates with mental health issues into a secured wing of the detention center where they can get treatment. He’s working with county leaders to see if they can “move that needle.”

Out Of Solitary, For Now

One day in late October, Adrian calls Richy on the phone. Adrian is out of solitary, out of jail, and in Canyon Vista Medical Center, a hospital with a locked mental health floor in Sierra Vista. It’s more court-ordered treatment.

Adrian says he’s getting shots that make the voices easier to deal with.

Richy hasn’t heard Adrian sound this good in several years. Richy is 36 now, and hasn’t had a drink in over a year. He’s married, goes to church and feels his life is finally coming together. But he never forgets his brother.

Sometimes Adrian calls Richy twice a day.

On one of these calls, Richy patches in the Arizona Center for Investigative Reporting. Adrian slurs his words and talks fast all at once. His voice is surprisingly deep.

Does he still hear Tony the bad voice?

“Yea, yea,” Adrian says. “Sometimes when I go to bed I understand that he’s here…They [the voices] are kind of mean they’re kind of scary but I can deal with it.”

He says if anyone needs electrical work, he’d be happy to do it.

And then it’s time for dinner, and he hangs up.

A few days later, a hospital social worker calls Richy. Adrian assaulted somebody. The details aren’t clear. Maybe it was in the hospital. Maybe it was on the way to another court hearing.

Now Richy doesn’t know where Adrian is. He calls the jail over and over.

Then he finds out Adrian is back in the hospital.

At least Adrian is safe and out of jail, Richy thinks.

For another day.

Subscribe to our newsletter

Were They Listening in at Our ACMI Meetings? How Two Separate Working Groups Came up with Very Similar Recommendations

A homeless person living on the streets of Phoenix and Van Buren and 1st Avenue in a business storefront. 13Nov2019

The Association for the Chronically Mentally Ill (ACMI) was created approximately two years ago by families with children that have serious mental illness and strong advocates that work helping such families. All board members are volunteers, and none work for any behavioral agency nor receive monies from AHCCCS or any provider agency. 

    The stories we often encounter are of persons with SMI who are not thriving nor able to advocate for themselves. They do not attend peer-run groups, their families have not received family support services, they often are isolated, and encounter law enforcement at alarming rates.  This is the small sliver of SMI population with Chronic SMI that is treatment non-adherent. Treatment non-adherence occurs when a person/patient’s decision-making process is most profoundly impaired (because their health condition is psychiatric in nature and happens to have core features, like anosognosia, which impair judgment about their health care). Another aggravating factor is the fluctuating nature of the impairment since people with severe psychiatric conditions experience variable periods of lucidity.

   Having a serious chronic medical condition that coincidently involves the brain should not result in a criminal sentence. We do not criminalize people with diabetes when their disease becomes unstable even if they are not adherent to the dietary requirements or medication schedules. A brain disorder is no different and should not be treated as a failure of proper moral behavior. It should be treated as a chronic disease. We also believe that not having appropriate housing is a harmful factor for those individuals that struggle with brain disorders. No one gets better when faced with the struggles of homelessness.

ACMI’s Over-arching principles:

  Our three specific goals are:

(1) develop more Lighthouse-Like Community Living Homes,

(2) develop a “Secure Residential Treatment Program”, and

(3) recommend criteria and processes for provider-selection, provider accountability (oversight), and implementation of person-centered provider culture related to (1) & (2). Passage of 2747, 2754, 2755 & 2756 will provide resources towards these goals. 

  Our biggest challenge is that many different sources fund society’s interactions with the Chronically Mentally Ill: AHCCCS, RBHA’s, Medicare, Medicaid, Counties, the State, City Police Departments, Courts, Jails, Prisons, Hospitals, Emergency Rooms, Etc. Major reform will require redeployment of public funds involving intense opposition from entities from which funding is redeployed, even though such entities would have a corresponding expense reduction.

From the Interim Report and Recommendations from the Committee on Mental Health and the Justice Reform System study: 

“Today, a person experiencing a mental health crisis is more likely to encounter law enforcement in a time of need than they are to receive medical assistance. Local law enforcement reports across the country reveal approximately one in ten police calls involve mental health situations.4 Local court users and jail populations reflect this reality. Nationwide, rates of serious mental illness in jails are four to six times higher than in the general population.5 According to the National Alliance on Mental Illness (NAMI), 2 million people with mental health conditions are booked into jails each year. Nearly 15% of men and 30% of women booked into jails have a serious mental health condition. Further, the majority of these individuals are misdemeanor offenders, or are serving time in jail for non-violent offenses. Many of the individuals are homeless and most of the crimes are “survival crimes”.  In fact, most people in jail have not yet gone to trial.6 “

   Over the next two years, the association and its members determined that appropriate housing, including secure housing, was a fundamental requirement for the treatment of those with SMI. Working with influential legislative leaders such as Nancy Barto, Heather Carter, Kate Brophy McGee, and Sylvia Allen, among others, the legislature passed a series of laws. These laws specifically included money set aside to provide secure housing for those persons living with SMI who are otherwise non-adherent to treatment and whose recovery therefore is made more lengthy and dangerous. The Appropriations Committee appropriated $3.5 million to launch this effort in 2019 with an RFP form the Arizona Department of Housing followed by competitive bidding in early 2020.  ACMI is proud of this remarkable success story and the hope it brings for the chronically mentally ill.

  In October 2019 The Committee on Mental Health and the Justice System issued a report with recommendations to the supreme court of Arizona, which included broad-based recommendations for changes to the justice system that would impact the way persons with SMI were treated. The Committee recommend legislation that would provide for “enhanced services” for people with SMI that are non-adherent to treatment. Specifically, in Appendix B(D)(1b) ,  the Committee recommended “housing or residential placement that provides the patient with stable, safe and, if necessary, secure residence to enhance compliance with the treatment plan and protect the safety of the patient and the public.”

 There is, therefore, a somewhat rare concurrence between the work of ACMI (a small start-up non-profit) and the legislative and judicial branches of our government with regard to the need for secure housing for those patients with SMI who are non-adherent to treatment. 

  ACMI and its members have every reason to hope, if not believe, that the executive branch of our government also approves of such necessary and appropriate housing.

The Committee’s report is a remarkably succinct and compelling overview of opportunities and challenges facing Arizona’s behavioral health industry and those who received services in that industry.  It bears reading by all engaged in mental health policy in Arizona.

The highlights of the recommendations

fall under the following categories:

• Legislation, Policy, and Procedure

• Training and Education

• Data Resources and Analysis

• Court Improvement

• Community Services and Supports

• Diversion and Early Intervention

• Programming and Partnerships

• Access to Technology 

The full report provides a blueprint for evolution and refinements of our behavioral health system for years to come.

Read the full Interim Report and Recommendations from the committee on Mental Health and the Justice Reform System https://acmionline.com/wp-content/uploads/2019/11/MHJS-FINAL-Interim-Report-Sept-2019.pdf 

Subscribe to our newsletter

Tragic Endings as the Current Behavioral Health Systems and Mental Health Community Believes that the Status Quo is Ok

Cheryl Roberts of the Greenburger Center for Social and Criminal Justice has been working for many years to provide an alternative to incarceration for individuals that are treatment resistant. 

“For those who refuse treatment, like Santos, the default is often the streets. Yet undeterred by this reality, the public fails to fund robust supportive housing and some officials and advocates still fail to acknowledge the value of court-mandated treatment or admit that we need to develop a wide variety of intensive supported housing and yes, some involuntary commitment beds to deal with serious cases, at least until they are stable.” Cheryl Roberts

Stories like this are happening too frequently for individuals that are not treatment adherent. Leaving untreated psychosis can have a dire impact on the individual, their loved ones, and their community.

ACMI is advocating that all individuals deserve a chance for a life with dignity. And we believe that until there is a period of stability in a safe recovery-based environment, recovery is unlikely to begin. Individuals that are treatment adherent tend to have trust with their treatment teams and a support system that works for them.  Secure residential treatment is not for individuals that are adherent to their treatment.

Secure residential treatment is also not intended for individuals that have encountered a setback with their illness.  It is for those individuals that have been highly unsuccessful with the current system, systems where they walk out because they do not believe they are ill. We believe that this is not a permanent placement for individuals, but a temporary arrangement to gain insight to start on a path for long term stability and a move towards more independence. The opponents of this philosophy offer no solutions for this segment of the population. Providing the same ACT team, peer support, and community living does not work for someone that is highly psychotic and lacks insight. Remember the definition of insanity- doing the same thing and expecting different results. ACMI strongly believes that providing secure residential treatment will provide a valuable missing service.

Subscribe to our newsletter

Few are guilty, all are responsible: How to fix a system that let a homeless man kill four other homeless men on New York’s streets

By Cheryl Roberts New York Daily News

Oct 10, 2019 | 3:01 PM|

Randy Santos is arraigned in criminal court for the murder of four homeless men on Oct. 6 in New York. (Rashid Umar Abbasi/AP)

As a former town judge and current bond agent for the Columbia County Bail Fund, I bristle at reports blaming the recent deaths of four homeless men on the Bronx Freedom Fund for bailing out the suspect, Randy Santos. I also bristle at those who point the finger at the Brooklyn judge who tried to divert Santos into mental health treatment after an earlier arrest rather than locking him away.

Like appears true of Santos, approximately 90% of the people I have bailed out have a mental illness and or substance use disorder. And while our bail fund’s volunteers go to incredible lengths to ensure our clients are connected to services, sometimes services are not enough, especially when someone refuses treatment or does not comprehend that he is seriously ill.

As a local judge in upstate New York, I had no good options to address the needs of people living with serious mental illness. Though New York City judges have more options, they are not mental heath professionals and cannot supervise a defendant once he or she leaves court. Yet judges are left to develop “treatment plans” and evaluate sometimes unknowable risks about mental health conditions and potential violent outbursts in a field where medications have not fundamentally changed in the last 30 years, basic scientific funding and research has lagged, and even seasoned psychiatrists would have a hard time diagnosing these defendants, a population, along with the homeless, many psychiatrists avoid at all costs.

Attempts to lay blame on the district attorney for failing to be tougher toward Santos may also be misplaced. Under the status quo, whether a DA diverted Santos or prosecuted him for previous charges, it’s quite possible that neither would have done justice, made the community safer or avoided tragedy. At some point, Santos would have re-entered society, most likely the worse for wear, after spending time on Rikers.

If blame is to be laid, it should start with the public and elected representatives, especially federal officials, who failed to fund mental health services or research for decades. That’s the real root cause of this problem.

[More Opinion] ‘No new jails’ means same old jails »

According to the National Alliance on Mental Illness, between 2009 and 2011, states also cumulatively cut more than $1.8 billion from their mental health budgets, with New York State scoring the second largest cuts in the nation, totaling $132 million. Perhaps it is not surprising then, that between 2009 to 2018, the city’s 911 calls involving “Emotionally Disturbed Persons” rose from 97,132 to 179,569.

Ironically, the mental health profession and certain mental health civil rights organizations are also at the core of our unraveling mental health system. Where has the American Psychiatric Association been for the last 30 years as their most ill patients have been criminalized or driven to homelessness?

And shame on groups that still advocate for complete deinstitutionalization, who refuse to acknowledge that mental institutions never really went away, they just morphed into two types: posh mental health facilities costing thousands of dollars a month, or prisons and jails which cost just as much but often deliver poor treatment, if any.

For those who refuse treatment, like Santos, the default is often the streets. Yet undeterred by this reality, the public fails to fund robust supportive housing and some officials and advocates still fail to acknowledge the value of court-mandated treatment or admit that we need to develop a wide variety of intensive supported housing and yes, some involuntary commitment beds to deal with serious cases, at least until they are stable.

Until the public stops stepping over people like Randy Santos and demands that our tax dollars fund a public health system geared toward the most ill and potentially most dangerous, there will be more tragedies like last week’s.

Let’s start by building on, rather of tearing down, the work Thrive NYC has done to raise awareness about mental illness and instead direct more Thrive funding to the most seriously ill. Then, over the long term, we must insist that funds to build new jails are at least in part spent on the real needs of those living with serious mental illness and substance use disorders.

Roberts is executive director of the Greenburger Center for Social and Criminal Justice.

Can Trieste Model Work in Los Angeles?

Los Angeles financial district (AFP PHOTO / ROBYN BECK /Getty Images)

We mentioned Trieste Italy in an earlier blog. How are People with Serious mental Illness Faring in our Jails? Trieste is a city and a seaport in northeastern Italy. The metropolitan population of Trieste is 410,000, with the town comprising about 240,000 inhabitants. Trieste has a culture that embraces its most vulnerable people and, as a community, takes care of them. In 2017 while visiting Trieste Italy, Kerry Morrison, (an advocate in Los Angeles) discovered a unique mental illness community culture.

Kerry Morrison found a mental health culture and treatment model in which every patient was cared for and, no one was left to pitch a tent and fend for themselves. This practice of caring for the most vulnerable is in stark contrast to what we see in America’s largest cities. 

I am excited to see if the Trieste model can be transferred to a city the size of Los Angeles. Possibly achievable if piloted in a smaller community neighborhood. 

We would like to see all our vulnerable populations housed and treated with respect and dignity.

Subscribe to our newsletter

Column: Shamed by Hollywood homeless catastrophe, she went to Italy for answers

Kerry Morrison, left, talks to Keith Weston, 52, who is homeless, at an encampment on El Centro Avenue in Hollywood. (Mel Melcon / Los Angeles Times)

By STEVE LOPEZCOLUMNIST  OCT. 5, 2019 11 AM

Kerry Morrison had seen enough. She was not a clinician or policymaker, and she didn’t know what the answers were. But she knew she was looking at failure, and she knew she could no longer ignore it.

All around her, in the heart of Hollywood, people were living in subhuman conditions, sprawled beside storefronts and at bus stops. Their clothing was shredded, their bodies were black with grime, and their unattended madness was a daily indictment of public compassion and will.

“I couldn’t reconcile the sight of cranes, signifying progress, while stepping over mentally ill people on the street,” said Morrison, who was director of the Hollywood Property Owners Alliance for many years, and a decade ago began taking a closer look at the growing homeless population.

I remember wondering briefly, when I met Morrison back then, if she was more interested in cleansing the streets on behalf of the business interests she represented than in helping those who were suffering. But she and I were soon sharing notes on our daily interactions with those who were struggling, and on social workers who against all odds were making a difference.

“I felt called to this,” Morrison says now.

She reached out to professionals, joined boards, helped launch a campaign to identify and help the 14 most dreadfully ill people living on the streets of Hollywood. Morrison researched mental health policy and the history of what went wrong in the United States, and in particular in Los Angeles, where against a backdrop of economic progress and wealth, sick people were living in squalor.

Dr. Jonathan Sherin, right, the new director of the L.A. County Mental Health Department, chats with a homeless person on a Hollywood sidewalk.  (Steve Lopez / Los Angeles Times)

Morrison won a fellowship to further her studies, checked out mental health programs in other U.S. cities, and traveled to a town in Belgium where families “foster” adults with mental illness. Last year, she gave notice to the property owners group that she’d be leaving her job in February to devote her full attention, unpaid, to her cause.

But it was a trip to Trieste, on the uppermost rim of the Adriatic in Northern Italy, that turned her despair into hope. It was there, in the summer of 2017, that Morrison found a mental health model in which every patient was looked after and no one was left to pitch a tent and fend for themselves. And it was there that she began mapping a plan to bring the Trieste model home to Hollywood.

Morrison tells a story about that first visit to Trieste, when she asked a young psychiatrist named Tommaso Bonavigo how he handled one difficult case involving a seriously troubled patient.

“He said he started going out to his house to find him and I said, ‘Excuse me, Tommaso. You went to his house?’” said Morrison. “I said, ‘You know what, Tommaso? I almost wish I hadn’t heard this because the chasm between what you’re doing in Trieste and what we’re doing in Los Angeles seems completely insurmountable.’”

It is, in many ways — especially given the scale of the problem here. But when Morrison got back home, she refused to let the thousand and one challenges cloud the promise of Trieste. There, Morrison had found, the program was patient-based, not bureaucracy-driven. The philosophy was to focus on the person rather than just the illness, to treat people as full-fledged members of the community, address individuals’ specific needs and closely monitor the progress.

One of the first people she went to in Los Angeles was Dr. Jonathan Sherin, the new director of the L.A. County Mental Health Department.

Dr. Jonathan Sherin, right, the new director of the L.A. County Mental Health Department, chats with a homeless person on a Hollywood sidewalk.  (Steve Lopez / Los Angeles Times)

“I told him, ‘Jon, you gotta see this,’” Morrison recalls.

Sherin knew about Trieste but had never been there. He listened to what Morrison had to say, then talked it over with L.A. County Superior Court Judge Jim Bianco. Bianco works in the mental health division and has long been frustrated by the number of sick people who end up homeless, in jail or in psychiatric lockdown because so few alternatives are available.

“Bianco and I … both agreed — we’re going,” said Sherin. “And we went.”

So did 10 other curious locals, led by Morrison, and they liked what they saw. Upon their return, they began pitching others on the wonders they’d seen, and the momentum grew. It was decided that a section of Hollywood, with about 100,000 people, high levels of addiction and mental illness but not as many services as skid row, would be a good place to test Trieste.

But how to pay for a pilot project in L.A.?

Thanks to voter-approved Proposition 63 in 2004, which taxed millionaires, about $2 billion is generated annually for mental health services in the state. Sherin appealed to the Mental Health Services Act oversight committee to take a shot on a new strategy that focuses on outcomes rather than process, and $116 million was freed up from an “innovations” fund.

The deal now awaits a stamp from the county Board of Supervisors.

Two weeks ago, a delegation of three dozen local and state officials and members of nonprofit service agencies went to Italy with Morrison for a closer look. L.A. Mayor Eric Garcetti’s homeless services leader, Christina Miller, went along, as did California Assemblyman Richard Bloom. L.A. Dist. Atty. Jackie Lacey was there, too, along with representatives from the LAPD, the L.A. County Sheriff’s Department, and the office of county Supervisor Sheila Kuehl.

And I tagged along to see firsthand what all the excitement is about.

I’ve written a lot in the last 15 years about what works and what doesn’t, about how our streets were turned into asylums, about a friend I’ve been trying to shepherd through the failing system, and about how we’re now averaging nearly three homeless deaths a day in L.A. County.

In Trieste, I was curious about two things:

How do they do it? And can we replicate it?

The first question, I can now say, is easier to answer than the second.

No magic was involved in Trieste. When mental institutions were closed 40 years ago in Italy — about the same time as in the U.S. — Trieste innovated while the U.S. abdicated, falling miserably short on the promise of community clinics.

Under the leadership of a psychiatrist named Franco Basaglia, Trieste built a coordinated network of treatment centers, embraced patients as full-fledged members of the community, invited family members to participate in their loved one’s recovery, built relationships with employers who hired the patients, and didn’t let bureaucracy or billing entanglements sabotage good outcomes.

When someone has a psychotic episode in Trieste and there’s a call for help, it’s usually a mental health team that responds, not police, and the team often has already built a relationship with the client. At one mental health center we visited, a nurse described a recent event in which she responded to a distress call and spent seven hours with a patient who eventually agreed to come in for help.

The doors of community mental health facilities are not locked in Trieste, and we were told that if patients choose to leave, staff members follow them to make sure they remain connected to help.

Psychiatrists at one mental health center said they had only five cases of involuntary commitments last year. It happens rarely because when people have easy access to regular help and begin to know and trust care providers, they’re easier to treat, and not as inclined to have their conditions deteriorate, or to resist therapy or medication that might help.

As ideal as this all seemed, there were times when Trieste sounded a little too good to be true, and it was hard to know in just five days what the long-term outcomes look like. The program has been criticized over the years, by those who favor more institutionalization, and Italian budget constraints could threaten its survival.

But what we saw was so vastly superior to the bedlam we call a system, I felt a sense of shame when Los Angeles briefly took center stage in Trieste.

Care providers from around the world were in the northeastern Italian city of about 200,000, with daily presentations and panel discussions from attendees, many of whom spoke of innovative programs to help those in need. And then Morrison stepped up onstage with Anthony Ruffin, of L.A.’s mental health department, to talk about Hollywood’s sickest homeless people and the mostly failed efforts to rescue them.

Photos of the Hollywood 14 were displayed on the big screen. A majority of them were African American. They were sprawled on streets and huddled under blankets, like storm refugees or casualties of war. Three of them died, Morrison told the crowd.

She also talked about how we usually have about 5,000 mentally ill people locked up in our jails at any given time.

The conference center fell silent.

In the richest country on the planet, this was the state of Hollywood, the world’s mythical capital of imagination?

It was like seeing our own abominable failure with fresh eyes, and it wasn’t entirely clear that even with a map in hand, we could find our way to a better place.

We have 40 times the population of Trieste and 50 times the challenges.

There was no evidence of NIMBYism anywhere; we’ve got it everywhere.

In five days, I didn’t see a single homeless person in Trieste. Trieste has no drug epidemic, even as ours rages, and it’s harder to help people with both a serious mental illness and a debilitating addiction.

Especially when they live in tents.

The Hollywood pilot will serve those who are housed as well as those who are unsheltered, but there will be legions of the latter. At one point, Miller asked the lead psychiatrist in Trieste — Dr. Roberto Mezzina — his thoughts on treating people with a mental illness who are homeless and may be for quite a while.

“It’s impossible,” Mezzina said.

On one of our days in Trieste, we visited a recovery home where four residents live. Michele, the house supervisor, talked about how he himself once went through storms of depression and had no desire to go on living.

“It’s like going under the sea,” he said.

In the Trieste program he was prescribed medication that helped, he got a job, and for the first time in his struggles with mental illness he saw doctors he believed were truly invested in him getting better.

Michele supervises four residents who are now where he once was. One, who works as chef, was in the kitchen making a birthday cake for another resident, who works as an elder care assistant. I asked Michele what happens if relatives call and ask how the residents are doing.

He reacted as if that were an odd question. They are happy to talk to relatives about clients, he said, “if it’s for the benefit of the person.”

The reason I asked is that in the U.S., laws protecting patient privacy often keep family members in the dark, and we can add this to the list of needed American reforms and challenges for Hollywood.

Also, Trieste has no shortage of mental health facilities for its clients, no matter the severity of their illness. We have epic shortages of everything. We also have a disjointed, beastly bureaucracy and criminally tortuous billing systems designed to beat the breath out of hope.

So this won’t be easy to bring home, or to scale up to our vast need, and no one in the L.A. delegation was under the illusion that it will be. There were gasps when we learned that Trieste has enough staff to make two or three daily home visits to check on clients in the throes of crisis. That’s a huge investment, and going forward in L.A., covering the cost will be yet another monumental challenge.

But our comparative debacle of a system makes it all the more critical that we blow it up, and it’s unforgivable that it’s taken this long to try something new.

I’ve seen programs in Los Angeles that echo the Trieste model on a small scale, some of them quite effective. But even those get battered by bureaucratic interference and debilitating resource shortages.

The Hollywood pilot has to be built to eviscerate those problems and free a well-trained army of people to serve a far larger population, and whatever clicks in Hollywood has to be rolled out to the rest of the county as quickly as possible.

Mental illness hits about a quarter or more of our homeless population, but this is not about ending homelessness. It’s about ending our inhumanity, and finally helping those we’ve left to languish and even die at our feet.

What comes next is a year of planning out the specifics, siting urgent-care and community health centers, recruiting Hollywood businesses to hire participants, convincing residents this will be a community asset and not a burden, hiring clinicians and outreach teams that include those who were once in need of help, and lining up enough housing to give the pilot a chance.

“I’m out on a limb on this one,” Sherin admitted when I met with him in Hollywood one morning after I got back from Trieste, and we discussed the promise and the challenge.

Sherin said Los Angeles has focused for too long on easier cases while giving up on those with more severe and hard-to-treat symptoms. In the pilot, he envisions several teams of 10 to 12 staffers assigned to groups of 100 to 125 clients, and he doesn’t want those clients endlessly shuffled from streets to jails to hospitals without a constant, coherent effort to help them break that cycle.

“I don’t give a rap what time of night it is, you take care of them,” Sherin said.

The doctor said he hits the streets with his outreach teams once a week or so to stay in touch with the need. Anthony Ruffin, who is helping build the pilot and whose dogged outreach efforts I wrote about two years ago, wanted Sherin to check on a man with mental illness and meth addiction who has been living on the same patch of sidewalk near a coffee shop for 10 years.

When we got there the man was ranting, taunting passersby, screaming profanities and insults.

Sherin sat next to him on the sidewalk, took the full brunt of the eruptions, and waited him out. They talked quietly for a few minutes. The man said he was out of his medication, and Sherin promised to come back and bring him some.

We have way too many such cases and we can no longer have people camped outside for 10 years, and sometimes longer, as we shrug or throw our hands up in surrender, or tell rattled merchants or residents we’re sorry but we don’t have any answers.

The man was still ranting when we left, but Sherin said the pilot won’t shy away from tough cases like this one. It will take them on because it’s the humane and moral thing to do. Whatever happens, I found it encouraging that the county’s mental health director doesn’t consider himself above sitting on a gritty Hollywood sidewalk to connect with someone in desperate need.

When I checked back in with Morrison after my return to Los Angeles, she had moved on to Rome, where she was looking at more mental health innovations and trying to learn from them. She said that Trieste for her was still the gold standard, and she was ready to begin the hard work of bringing Los Angeles into line.

As the headline said on a Morrison blog post two years ago:

“Once You’ve Seen Trieste, You Can’t Pretend It Doesn’t Exist.”