ACMI would like to encourage those who have interacted with Arizona’s crisis line to provide feedback on their experience.
AHCCCS, the state Medicaid agency, seeks feedback from Arizonans who have called a crisis line to get help for themselves or others. Please take this short survey. We want to know—what worked well and what could go better?
Most folks reading our blog know the long disturbing history of how we have gotten to such a sad place in the US in our treatment of people with serious mental illnesses. You may find it interesting, as I did, to learn that President Reagan made a major change (see below), which resulted in diminished community resources.
“That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.”
We need a federal plan that also involves the removal of the IMD exclusion. This mental health treatment exclusion is a parity violation. There is no such restriction on the length of stay or the number of medical beds in hospitals for medical conditions. Learn more about parity laws.
We need to focus on the people with SMI and not just general mental health!!
Original article published by StatNews on July 9th by Allen Frances
President Biden’s ambitious infrastructure plan has a glaring omission: It makes no effort to redress the awful reality that the United States has the worst mental health infrastructure of any country in the developed world.
People with mental illness, their families, and society at large are suffering the tragic consequences of four decades of mental health defunding and privatization: 90% of psychiatric beds have been closed; the once-wonderful system of publicly funded community mental health centers has been gutted; crisis response teams are almost nonexistent; and the available pool of affordable housing meets only a fraction of what’s needed.
In the Middle Ages, people with severe mental illness were often chained in prisons, begged on the street, or languished in poor houses. In modern America, 350,000 people with mental illness are in jails or prisons (often for nuisance crimes that could easily have been avoided had treatment been available); 250,000 of them are homeless; and the average life span of those with severe mental illness is 20 years less than that of the general population. The rate of dying from Covid-19 was three time higher among people with schizophrenia than in the general community — the second biggest risk factor after age.
Law enforcement officers, sheriffs, and judges have become the most vocal critics of the brutal criminalization of mental illness and are now among the strongest advocates for improved community treatment and housing. Forcing scared and untrained police officers to be first responders for people with untreated mental illness puts them in untenable positions and is partly responsible for police brutality and shootings. People with untreated mental illness are 16 times more likely to die during a police encounter than other civilians.
And once in jail, people with mental health issues are difficult to manage, deteriorate further, spend disproportionate time in solitary confinement, and have prolonged stays (especially since they have no place to go and no treatment if released).
How did the U.S. get into this mess? Massive and rapid deinstitutionalization of people with mental health issues began in the late 1950s for several reasons: partly because effective antipsychotics had been discovered; partly as a humanitarian response to the horrors of the overcrowded “snake pit” state psychiatric hospitals; partly as a cost-cutting method (since mental health was often the biggest and most tempting item in state budgets).
The “new approach to mental illness” that President John F. Kennedy called for in a 1963 speech, which resulted in his signing into law the Community Mental Health Centers Act later that year, was a response to the great disruption caused by the rapid closure of the huge state hospitals. Community services were meant to provide a better life for people with mental illness at less cost to the states.
My first job working in a community mental health center in 1973 in New York City was thrilling. Patients who had languished for decades in state hospitals were able to enjoy much more normal lives with the benefits of medication and inclusion in the community. The U.S. became the world leader in community psychiatry and I was proud to be a psychiatrist.
That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.
And the money saved by closing the expensive state psychiatric hospitals rarely followed patients into their communities to provide badly needed treatment and housing. Community mental services either closed or were privatized, and the newly private services routinely refused care to people with severe mental illness because they were usually uninsured and always very expensive to treat.
Eventually, deinstitutionalization turned into reinstitutionalization as prisons replaced hospitals as the biggest line item in state budgets. Under Reagan, the U.S. quickly went from having the best system of community psychiatric care in the world to the worst, and things have further deteriorated ever since.
It is not clear how much of Biden’s extensive physical and human infrastructure rebuilding plan will eventually be enacted into law. But it is crystal clear that rebuilding our country’s shamefully lacking mental health system is not part of the plan.
It is also clear why. Powerful lobbying forces in Washington are fiercely jostling to capture the money allocated to the infrastructure program. Whatever emerges will reflect how much political and economic muscle each industry can exert on the politicians doing the horse trading. In this battle of the titans, people with mental illness are voiceless and their advocacy groups lack political and economic muscle.
The care of people with severe mental illness is necessarily a public responsibility that has been neglected in our primarily for-profit private health care system. The United States has shirked this public responsibility more than any other developed nation on earth. The Biden plan is a sad lost opportunity to play catch-up on desperately needed mental health services and its exclusion of mental health means there is no hope in sight.
Mahatma Gandhi once said that a nation’s greatness is judged by how it treats its weakest members. By this standard, the United States is morally bankrupt and the very opposite of great.
Allen Frances is a psychiatrist, professor and chair emeritus of the Duke University Department of Psychiatry, and was chair of the DSM-IV Task Force from 1987 to 1994.
Image by Geesling photography -SMI people on the streets of Phoenix
Linda Mimms initially shared this article via social media. This article is a brilliant take by Dr. Rob Laitman on what it costs our society monetarily and, more importantly, our humanity. Failure to appropriately treat people with mental illness disorders is caused by not meeting people’s treatable medical brain disorders, in addition to multiple other factors. We have been violating the CIVIL RIGHTS of this neglected group of sick citizens who have needed treatment for decades with disastrous results. The family and community burden is one of these many disastrous outcomes. These members’ lives with serious mental illnesses are often 25 years shorter than the rest of the population. Jails and prisons are treating (though inadequately) our sickest society’s members using our criminal system as an alternative to a therapeutic environment. They have become a de facto significant psychiatric provider in this punitive setting. We continue to treat the behaviors of mental illness as criminal acts.
Charles Goldstein, MD
“The more I look into the horror of our healthcare system, the more outraged I become. Let me give you some perspective as a nephrologist (kidney specialist). End-Stage Renal Disease (ESRD) is the only medical diagnosis that automatically qualifies you for Medicare. Currently, there are 468,000 ESRD patients in the USA. The average expenditure per patient per year is $150,000. The total cost is 70 billion dollars. Employment in ESRD patients is 20% employed to age 55 and less than 3 % thereafter. Now let us look at the psychotic spectrum disorders representing 2% of the population (1 % schizophrenia spectrum and 1 % bipolar with psychosis). This percentage represents 6,620,000 individuals. If we were to support their medical needs fairly and comparably, we would be willing to devote 1 trillion dollars just for their care.
So what do we spend? When it comes to direct patient care for schizophrenia, the most recent estimate from a 2016 study was 37.4 billion. If you were to assume that the cost of taking care of someone with bipolar with psychosis was similar (actually, we know it is substantially less), the cost would be about 75 billion. Essentially we are only spending less than 1/10 for our patients with psychosis medical care than we have already decided would be appropriate in the ESRD population.
What is even more outrageous is this lack of support leads to tremendous non-direct healthcare costs, including law enforcement, homeless shelters, and productivity losses of both the patients and the caregivers. Specifically, for schizophrenia, unemployment cost was 59.2 billion, and caregiving was 52.9 billion.
What drives this tremendous disparity in resource allocation starts with the nihilistic belief that psychotic spectrum disorders are not treatable. Why should we devote resources to a hopeless population? Another component is that 50 % of this population has anosognosia, and therefore does not feel that they need treatment. Given the current status of the laws that “protect” patient’s rights, such as HIPAA and the underutilized and underpowered AOT laws, it is impossible to engage the patient even to start an effective treatment. Where we are right now is less than 50% of all patients with psychosis receive any care. The biggest psychiatric providers are the LA jail, Cook County jail, and Rikers Island jail. It is estimated that 20-40% of the prison population has a psychotic illness. The ever-growing homeless population also has been found to have a similar % of serious mental illness. At present, in those receiving treatment, only 14 % are in meaningful recovery.
The question is, what are we doing wrong, or is this just a hopeless population? What does the evidence say? As it turns out, there is increasing evidence that early identification of prodromal high-risk individuals can be identified, and by working on their processing speed (REM) the development of the full-fledged psychotic disorder can be aborted. Even after the development of psychosis, early treatment with the most effective treatment and wrap-around social services can change the trajectory of the illness. This is being demonstrated impressively with the Recovery After Initial Schizophrenia Episode (RAISE) study. Remarkably, the VA has shown that if patients are switched to clozapine, there is a savings of over $ 20,000 accrue per patient-year initially, and as monitoring becomes less, that saving grows. Switching to clozapine has also led to the best survival, the lowest hospitalization rate, and the best quality of life. In my hands, I have demonstrated what is possible with optimal clozapine care. 75/103 of my patients treated over six months are in meaningful recovery. I define meaningful recovery as being in school, work, or a PROS program training to work. Hospitalization and, therefore, the cost of care has been minimized. In over 330 patient-years of care, there have been only 1.3 years of hospitalization. This translates out on average 1-2 days/year in the hospital. Medical compliance has been over 90% in those that have been successfully engaged, and overall over 98% of the population considers themselves improved with my care.
So we need to let our legislators know that they are not throwing good money after bad money. We need to have the resources to change the barriers to care. Specifically, we need a national uniform rational AOT program that gives the provider the ability to treat the patient where the need is demonstrated. Serious mental illness is a team sport, and communication has to be seamless, so we need to reform HIPAA to assure that caregivers are involved in every step of the way. We need to invest in improving access. Taking care of these patients takes a lot of work, and the reimbursement is dismal for the provider. So I return to the ESRD program. For every dialysis patient, the provider is paid a fixed amount for dialysis management. Clozapine is a lot of work and is superior to all other antipsychotics in every setting, and yet only 2% of the population is so treated. We need to invest in these patients and provide a treatment stipend for management. A reasonable fee schedule would be initially $1000/mo for the first six months, $750/mo for the next six months, and then $500/mo after one year. If the patient is hospitalized, the amount should be reduced proportionally to the time spent in the hospital. This is how the ESRD program works, and this carrot has led to superior clinical care. In our population, this small carrot could be a game-changer not only in the quality of care but the end of being a tremendous cost saver. With the cost-saving, we would then be able to devote more resources to all of the appropriate supports.
In summary, we need to convince the powers that be to devote appropriate resources. We need bravery to insist on rational laws that help engage our patients and families in therapeutic relationships. Our medical professionals need to be re-educated in what is possible and learn the correct approach to treatment. We need to pay adequately for this arduous but rewarding work. If we do this, we will be able to provide an optimal clozapine based regimen with full wrap-around psycho-social services. With this, we will not only end suffering, but we will see a majority of this population lead lives of purpose and meaning.” Robert S. Laitman, MD
Recently, when we were still permitted to congregate socially, I was at a Friday night service in my synagogue when a young woman in the back row emitted a frightening scream, fell, and began convulsing. During her seizure, she hurt herself by falling and hitting her head (danger to self) and broke a chair nearby when she fell on it (property damage). Of course, paramedics were called who attended to her and eventually transported her to a hospital, whereupon I lost contact with this particular young woman and her continued treatment. At no point were the police involved with this manifestation of symptoms of an otherwise presumably well-controlled person with epilepsy. Being an emergency physician myself, I can only tell you that my experience with people with seizure disorders being brought to the emergency room is that they are never subsequently taken to jail. The options are either hospitalization or, more frequently, discharged home on appropriate medications with appropriate follow up.
In another hypothetical scenario, a “brittle diabetic,” usually well-controlled on his insulin, passes out while driving and knocks over a Postal box when he runs into it with his car (a federal crime!). Police and paramedics show up; the patient is taken to an emergency room where it is ascertained that he indeed has diabetes and had become hypoglycemic. The patient is either admitted to the hospital or sent home on appropriate medications with appropriate follow-up.
In neither of these cases detailed above, were the patients assumed to be criminals. People exhibiting symptoms from a chronic disease are treated appropriately for their symptoms. Their underlying illness and hospitalization, if needed, are not a problem; there are plenty of inpatient beds for them.
Let’s contrast this with what might have happened if this was a person with serious mental illness attending the same Sabbath service and became symptomatic, started flailing around, and did some property damage as this woman did. Police and/or paramedics would have been called. The patient may or may not have been taken to an emergency room and may or may not have gone to jail because society draws a fine line (not so fine) between apparent “medical” conditions and “psychiatric” conditions. Unfortunately, in a behavioral health crisis, when people become symptomatic because of their underlying disease, the behaviors related to their disease can suddenly be considered a crime. Also, if it was adjudged that this patient needed further treatment on an inpatient basis, they would have found this to be nearly impossible as there is an extremely limited number of inpatient psychiatric beds in the state of Arizona.
Currently, experts recommend approximately one psychiatric inpatient bed for every 250,000 people. In Maricopa County alone, there are about 4 1/2 million people; this equates to an inpatient psychiatric capacity that should exist of around 1,800 inpatient beds. At present, in Maricopa County, there are just 55 beds available in the public system for long-term psychiatric treatment. The inadequate number of limited long-term inpatient psychiatric beds is a figure so egregiously deficient that the reader might well be shocked that this is the truth; shamefully, it is.
We need to correct this appalling lack of inpatient psychiatric therapy currently available for the Seriously Mentally Ill.
With DJ Jaffe’s passing on August 23, 2020, individuals living with serious mental illness (and their loved ones) lost a highly effective advocate. Some of us at ACMI, notably Deborah Geesling, lost a friend as well. So, what do we do next? How do we build on DJ’s work?
DJ knew first-hand what life is like for those living with serious mental illness and their families. He took up advocacy to make those lives easier, safer, better. And his work instructed and inspired a generation of mental health advocates. DJ’s messages — always delivered in clear, simple English — are notable for the absence of policy lingo and the gloss of politically correct phrases. He spoke authentically, unassumingly, and he spoke truth. With unparalleled, laser-like precision, DJ exposed shortcomings, and failures within the current “behavioral health” industry, a trendy nomenclature that DJ would remind us is a misnomer for what the seriously mentally ill need. DJ was clever, quiet, studious, relentless. And, of course, pony-tailed! He never shied away from a powerful adversary. No Goliath was too big for DJ. And so, he left big footprints for those of us engaged in advocacy for the seriously mentally ill. Perhaps DJ’s greatest attribute was his unparalleled ability to identify and “call out” practical policy failures that created and sustain our behemoth public mental health system. And while DJ is now gone, we remain blessed by his writings and speeches — his practical, informed, insightful words of wisdom.
During DJ’s visit to Phoenix a few years back, he spoke at a church in the East Valley and at an ACMI salon. The salon was held on a chilly evening beneath a spectacular Arizona sky. Chuck and Laurie Goldstein’s patio, overlooking the Paradise Valley Desert and facing the spectacular mountains east of the Valley, is both beautiful and inspiring. Add fireplaces, thoughtfully placed heaters, and blankets, and about 50 of us had a perfect setting for conversation and reflection. Before DJ began his remarks, we chatted privately; I thanked him for his work, which was so needed. His typically cogent response: “Well sadly it’s needed, but it really shouldn’t be.” Those words stay with me and remind me of the value of DJ’s concrete focus.
Photo courtesy of Isaac Geesling Photography 2018
Before meeting DJ, I had read the speech that he delivered to the 2012 NAMI New York State convention. I keep it on my computer “desktop”. My favorite part is this:
I am not a mental health advocate.
Like most of you, I am a mental illness advocate. I think we need less mental health spending and more mental illness spending. It is the most seriously ill not the worried-well, who disproportionately become homeless, commit crime, become violent, get arrested incarcerated or hospitalized. 360,000 are behind bars and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.
NAMI/NYS convention 2012
As a tribute to DJ Jaffe, each week for the next year, ACMI’s website will feature a quote from DJ Jaffe. We are calling this, simply, “52 Weeks of Truth Telling From DJ Jaffe”. By the anniversary of this remarkable’ s man’s passing, we’ll have quite a collection of words to live by .. a path of footprints, so to speak, to guide our advocacy and to honor this wonderful man. RIP, DJ JAFFE.
Holly R. Gieszl, JD
Founding Member, Board of Directors, the Association for the Chronically Mentally Ill.
It is well known to physicians like me who have spent a lifetime in Emergency Medicine that many patients are super-utilizers of the healthcare system, which we refer to in the vernacular of the ER as “frequent fliers.”
Quite often, these individuals run up high costs to the healthcare system, driven to emergency department rooms for primary care due to an underlying undertreated or untreated, serious mental illness. I believe that one of the reasons for this failure of treatment is due to a lack of safe, appropriate, and affordable housing. Though there are many other reasons why individuals with serious mental illness fail in our current behavioral health system, a fundamental problem is a lack of safe and affordable housing.
Recent findings in the Milliman firm report, a provider of actuarial and related products and services, entitled “How do individuals with behavioral health conditions contribute to physical and total healthcare spending,” revealed that the authors examined in detail the total health care costs for super-utilizers. Its findings were that just a fraction of individuals with serious mental illness accounted for nearly half the overall health care costs of the entire population of the study group.
Remember that this is only healthcare costs, not other costs associated with undertreated or untreated mental illness, which may include interactions with community resources such as police, fire personnel, and the judicial system. Sadly, this population often ends up in jails and or prisons or homeless due to behaviors related to undertreated or untreated mental illness.
Please look at the recent article by the Treatment Advocacy Center, and its embedded link to the Milliman report for further details.
RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization
By Elizabeth Hancq
RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization
By Elizabeth Hancq
Individuals with severe mental illness are often caught in the revolving door of super-utilization, cycling through inpatient hospitals, emergency departments, jail or homeless shelters.
Super-utilization refers to the phenomenon where a relatively small number of people make relatively frequent use of high-cost services at enormous public expense. Anecdotes of the role of severe mental illness in super-utilization can be found in countless local media stories, such as ‘Super Dave’ in Tennessee who was arrested more than 250 times in his lifetime, or ‘Jane’ in New Jersey who generated $4.4 million dollars in hospital charges in a five-year period.
However, the enumerated costs of the role of severe mental illness in super-utilization are largely unknown. “Accounting for barely 3% of the adult population, individuals with diagnoses of schizophrenia and severe bipolar disorder are known to be overrepresented in the systems most affected by the failure of the US mental health system, principally when untreated. Yet despite the human and economic toll of this pattern, the role of SMI in high utilization is largely uncharted,” the Office of Research and Public Affairs wrote in the 2017 report on the topic, A Crisis in Search of Data.
A ground-breaking new report released last week by Milliman is an important step toward understanding the role of serious mental illness in high utilization of health and mental health care services. The report’s findings provide cost estimates to the total healthcare services received and compares spending patterns between high-cost groups, with a focus on mental health and substance use disorders.
The study authors utilized 2017 healthcare claims data from 21 million individuals with commercial insurance. They compared levels of spending for physical and mental health care by spending group, high- cost (top 10%) and non-high-cost (remaining 90%), across the prevalence of mental health and substance use disorders among this population.
The researchers found that 57% of the individuals in the high-cost group had a mental health or substance use disorder, accounting for less than 6% of the total population but 44% of the total healthcare costs. Although the total healthcare costs for the individuals in this group averaged $45,782 per year, half of these individuals had less than $95 of spending for mental health or substance use disorder treatment in a one-year period.
Accounting for fewer than 1% of the 21 million individuals in the study sample, individuals with severe mental illness accounted for 3.3% of the total healthcare costs with the highest percentage of mental health service costs for any of the groups studied. Individuals with severe mental illness “have 6.3 times higher annual total healthcare costs and 4.2 times higher medical/surgical costs,” according to the report.
The findings in the report have important implications for policy makers and insurers to consider regarding the health coverage and spending associated with high-cost individuals. The report further validates the role of severe mental illness in super-utilization and points to how the current fragmented healthcare system has contributed to a lack of equitable, accessible treatment for individuals with severe mental illness. In addition, the findings underscore the importance of integrated mental health and substance use disorder treatment to prevent the high impact of these disorders on healthcare spending and reduce the personal and societal consequences of lack of treatment for individuals in need.
After reading the 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.
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.”
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.
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.
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.
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.”
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 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.”
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.
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