Indeed, finding cures for serious mental illnesses is a complex and multifaceted challenge. Even the experts at the National Institute of Mental Health (NIMH) and other institutions globally often do not agree on various aspects of mental health treatment for several reasons: they cannot agree on the diverse manifestation, the biology is complicated, there are psychosocial factors, and there are philosophical differences in researcher and practitioners.

Given these challenges, it is not surprising that experts in the NIMH and other institutions often do not agree on the best approaches to treating serious mental illnesses. Some have focused on stigma reduction, and as the article below states, that seems to have been effective as more prominent people (athletes, actors, and politicians revealed personal struggles). If we could agree to focus on finding effective treatments and funding research on cures, we could achieve better outcomes. However, ongoing research and collaboration among experts are essential to improving our understanding and developing more effective treatments for mental illnesses.

Laurie Goldstein

ACMI

*************************************************************************************************************************************************************************************************************

What COVID Revealed About American Psychiatry

The pandemic destabilized us—and exposed the fractures in our country’s approach to mental health.

By George MakariJuly 13, 2023

What COVID Revealed About American Psychiatry | The New Yorker

Illustration by Timo Lenzen
Illustration by Timo Lenzen

As the COVID-19 pandemic eases, a mental-health crisis still has us in its grip. My fellow-psychiatrists and I continue to be flooded with referrals, desperate calls, emergencies, and relapses—likely the consequences of years of isolation and grinding anxiety, loss, school disruption, and who knows what kinds of viral assaults on the brain. Preliminary studies report elevated rates of suicide, anxiety and depression, addiction, developmental delay, and psychiatric E.R. visits. Socially marginal people, health-care workers, and the young all seem especially at risk.

COVID has left us destabilized, in the midst of what might be thought of as a psychiatric pandemic. How bad will this be? Who will escape harm, and who will suffer the most? With the virus, we eventually understood the answers to these questions and focussed our public-health efforts accordingly. But the psychiatric consequences of the pandemic will be intrinsically more complex, varied, and obscure. First, there are millions of mourners whose loved ones succumbed to covid, often in terrible, sudden ways. Then there are some who may be suffering from subtle neuropsychiatric effects of the infection. In addition, there are those stuck in chronic states of fight or flight, or helplessness—mental modes that affect our sense of time. Such people may be jumpy, irritable, violent, trigger-happy, drugged out, avoidant, defeated, morose, or self-harming, for reasons that no one can recall. Doug won’t acknowledge that he’s getting high so often because of the stress of the pandemic. Jen will be incensed if you imply that she’s cutting herself because of the difficulties of the past three years. As with traumas suffered by soldiers in war, the covid past will slip into the present, darkening the future.

How should our psychiatric-health-care system respond? “We don’t have a psychiatric-health-care system,” the public-health expert Rosemary Stevens reminded me. She’s right. Americans suffering from mental illness routinely tumble through gaping cracks in our “system.” Homeless encampments, with many people in need of psychiatric help, sprawl along beaches near Los Angeles. Vast stretches of our heartland remain mental-health-care deserts. Chicago’s Cook County Jail has in recent years been our proud nation’s largest provider of psychiatric services. As for our struggling children, good luck finding help. The other day, I ran into a pediatrician who told me that she had just sent another suicidal teen to the emergency room; the kid was eleventh in line for a bed.

If by mental-health system we mean integrated parts working together, then it’s true that America doesn’t have one. Still, we do have an array of governmental agencies, nonprofits, biotech and pharmaceutical companies, hospitals, clinics, and medical colleges—in addition to an army of researchers, epidemiologists, psychiatrists, psychologists, social workers, and therapists—that could be called upon to meet whatever post-covid challenges we face. The National Institute of Mental Health sits at the center of this constellation. Founded in 1949, the N.I.M.H. was originally charged with leading America’s mental-health research, prevention, and treatment efforts after the Second World War, when startling numbers of veterans had “become mentally unbalanced in fighting for their country,” as the Post put it at the time. Since then, as the self-proclaimed largest funder of psychiatric research in the world, the N.I.M.H. has dominated the mental-health-and-illness ecosystem; its priorities nourish growth or extinguish it. One might imagine that comprehending and responding to the mental-health effects of the pandemic would skip to the front of that line.

Few of my clinical colleagues believe that will happen. Their pessimism reflects not just the current state of mental-health care in our country but decades-old trends that have reshaped how we think about mental illness—shifts that have blinded us to cataclysms like the one we have just endured. What should we do to correct our course?

Psychiatry has always been a “Rashomon”-like affair, with triumphalists and vilifiers, sincere testimonials from the saved and tragic ones from the lost. It is held by some to be humane and a force for progress, yet it has offended, at varying times, religious believers, libertarians, Marxists, Foucauldians, and “hard” scientists. Critics have never been in short supply.

So I should have been prepared to have my head spin when I interviewed clinicians, historians, and prominent leaders in the field about our capacity to respond to a post-COVID mental-health crisis. One day, I spoke to Allen Frances, the editor of the fourth Diagnostic and Statistical Manual of Mental Disorders, who was not optimistic and looked back in regret. “For me, the tragedy is that, on my watch—the last sixty years I’ve been involved in psychiatry—we have seen the care of patients deteriorate, not improve,” he said. The next day, Herbert Pardes, a former N.I.M.H. director, was more upbeat. Surveying the same time period, he noted that the stigma long attached to mental illness had diminished, and that new knowledge and treatments had blossomed.

Both, it turns out, are right. Psychiatry is composed of three intertwined enterprises: community care for sufferers; a medical specialty devoted to diagnosing and treating patients; and research programs focussed on mind/brain science. At their best, all three efforts aid and constructively challenge one another. But, in this country, during the past few decades, each has gone its own way. This fragmentation has been dramatic, tragic, and certain to compromise our capacity to respond to the post-covid crisis.

The availability of community care—essentially, food, shelter, and support for people with mental illness—is shaped by social values regarding those in need. Those ethical commitments have fluctuated over time. In the early nineteenth century, enlightened Western nations built asylums that were mostly justified in humanitarian terms, but those places of respite eventually became too-big-to-care institutions that warehoused and brutalized their occupants. In postwar America, as the welfare state came under increasing attack, and criticism of these so-called snake pits grew louder, state asylums closed. The sickest and poorest never made it to underfunded—or often unfunded—community mental-health centers. With the emergence of managed-care insurance, in the nineteen-eighties, shockingly short in-patient hospital stays led to still symptomatic patients’ being routinely discharged to the street or swept up into prison. There wasn’t funding for anything better. That is still the case. Should a mental-health epidemic strike us, there is no one to provide care at that scale.

This grim picture is made more painful by contrast with what the medical field of psychiatry, along with its allied disciplines, now can do. Médecine mentale, as it was once called, has long sought to stabilize itself with clear diagnoses and treatments; owing to the mysteries of the mind and brain, it didn’t get too far. Forty years ago, however, American psychiatry found its footing: the third edition of the Diagnostic and Statistical Manual cut free speculative claims about causation, sticking to diagnostic categories based on reliable and coherent clusters of symptoms and signs. Clinicians of all stripes now shared a common language. In reaction to orthodox Freudians and eager lobotomists, a “biopsychosocial” perspective took root, which encouraged practitioners to shun ideology and pragmatically address the biological, psychological, and social aspects of mental illness. Psychoanalysis grudgingly made room for an array of empirically validated psychotherapies. Medications such as Prozac, Effexor, and Risperdal emerged; they were mostly safe and, if not curative, often very helpful.

All these changes were accompanied by publicity campaigns attacking stigma. Mental disorders, we were reminded on billboards and in commercials, were no different from diabetes or any other illness. This work paid off. Today, princes, athletes, senators, and celebrities no longer hide their psychic struggles. And so, paradoxically, around three decades ago, as our commitment to care for the poor and uninsured evaporated, clinical psychiatry could boast of increased social acceptance and tools that were more effective than ever.

Many disorders remained far from cured; some were fully treatment resistant. But, for those patients, there was still hope. Psychiatry’s researchers were tasked with discovering the causes of these disorders. It was a gargantuan job, and a lot depended on its success. In the eighties, Senator Pete Domenici, a loyal supporter of mental-health efforts, told the Stanford neuroscientist Jack Barchas—a point person in the effort to stop cuts to mental-health spending by the Reagan Administration—that, although the country could not afford to care for all of its mentally ill, it could support finding cures for their diseases. During the nineties, which President George H. W. Bush declared the Decade of the Brain, hundreds of millions of dollars were directed to the N.I.M.H. in that effort.

Meanwhile, the institute shed some of its original congressional mandate for treatment and prevention, by giving the job of funding mental-health services to a new federal entity, the Substance Abuse and Mental Health Services Administration. From then on, as one former N.I.M.H. director told me, undertreatment and homelessness were samhsa’s responsibilities. As the Human Genome Project launched, and brain-scanning technology leapt forward thanks to functional MRI, pressure to find genetic and brain signatures for psychiatric illnesses grew. Yet, as the new millennium commenced, a specific scan for disorders such as schizophrenia remained elusive. Dreams of single genetic causes were dissipating. A crisis was brewing.

History holds a large, unmarked graveyard filled with the ideas of those who tried to pin down the ultimate causes of mind/brain illnesses. Critics and scholars have portrayed some of the memorable failures—a procession of phrenologists, degeneration theorists, germ enthusiasts, wild psychoanalysts, political revolutionaries, and sexual liberationists. All of them pushed for their cherished notion, only for it ultimately to be found misguided, wanting, or worse.

There’s an underlying reason for all this zigzagging. Picture an archer’s target; at the bull’s-eye, place the most basic of possible causes for mental illness—say, genes. Huntington’s chorea, a fatal disease that affects cognition and movement, is solely genetic: it sits wholly at the center of the target. But other, more common conditions, such as schizophrenia and bipolar disorder, can only partly be predicted in terms of genetic risk, and, in most other forms of mental illness, genetic determinism further diminishes. To fully understand those diseases, we have to start looking to the next ring in the target. What else might be at work? We may now take aim at neurons, then jump out to neural circuits and networks, then to the entire brain with its hundred billion neurons and trillions of synapses. At any of these different levels of biology, a pathogenic event might disrupt us.

As if that were not enough to overwhelm us, there is much more to consider. Next, our psychiatric archers must move their focus from the brain to the mind, bump up against the mind-brain problem, hurry past dozens of philosophers, and simply grant that minds, in part, can cause things to happen. After that, they must turn their attention to the other outer rings, such as the self, individual behavior, the social world, and the nonhuman environment. Each of those holds the possibility of specific kinds of trouble: negative thought patterns; chronic affects like fear or shame; relationships filled with abuse; deprivation, poverty, and our catchall term for many horrors, trauma; and then, in that very last circle, poisons, bacteria, and viruses.

By taking up all of the rings on that target as potentially interacting causes of illness, psychiatry captures a rich set of human possibilities, from errors in our molecules to forces like racism. Clinicians can take a shot at any of them, unleashing as many arrows as they need. Prozac, psychotherapy, leaving a brutal spouse? Yes, yes, and yes. But experimental science requires studies that reduce a vast field of variables to an independent one whose effect can be tested. Unlike a psychiatrist working with a patient, a scientist in search of a soluble problem must limit herself to only one spot. And so psychiatry has long been a scientifically unstable discipline; it has veered back and forth between different explanatory models because its object of study, the mind/brain, presents the most overwhelming array of epistemological problems in all of medicine. In our quest for valid and reliable answers, it’s easy to get lost.

In 2002, at a moment when the clinical promise of the Decade of the Brain remained unfulfilled, it came time to choose a new N.I.M.H. director. Thomas Insel, a leader in the quest to find biological explanations for complex behaviors, got the job. Insel was brilliantly successful, famous for illuminating the role of the hormone oxytocin in eliciting bonding behavior in voles—an important finding in the emerging field of social neuroscience. Frustrated by the weaknesses in the nation’s mental-health-research program, he concluded that they stemmed from one of the foundations of clinical work: DSM-III was serving practitioners and patients well enough, but its categories were sometimes too muddy for researchers in search of well-defined scientific targets. How many specific kinds of depression lurked in “D.S.M. 296.31, Major Depressive Disorder, Recurrent, Mild”? Most experts would guess that there were many. And, if one did not tease apart those variants, how could anyone figure out what caused Jim’s depression but not Jane’s, why Zoloft worked on Amelie but not Eli?

In 2010, Insel and his team unveiled the Research Domain Criteria, or rdoc, a new framework for the study of mental disorders that introduced its own nomenclature and benchmarks. The move seemed to separate scientific research from the language and culture of patient treatment—a divorce made more bitter when Insel suggested that DSM categories were mere constructs “based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.”

rdoc’s influence was felt across the institute’s research portfolio. It aspired to be objective. It also prompted scientists to ask questions about disorders in a very specific way. You could study problems like hyperactivity in kids, post-traumatic stress disorder in rape victims, or self-harm in adolescents—but, to maximize your chances of being funded, your study had to incorporate a measurable characteristic, such as a gene or neural circuit, that reflected an underlying biological process. In a 2013 ted talk, Insel, standing before mesmerizing brain scans and images of neurons, assured his audience that new knowledge based on this approach—he had previously called it “clinical neuroscience”—would soon sweep away two centuries of psychiatry.

Since then, this new paradigm has powerfully altered what psychiatric scientists look for—and what they look past. For example, researchers have discovered hundreds of genetic loci associated with schizophrenia and with major depression, and more than fifty for bipolar disorder and autism. Each time a new correlation is found, geneticists celebrate. But, as E. Fuller Torrey, an advocate for the severely mentally ill, told me, so much success has added up to failure. “They have identified a lot of risk genes, not any that cause a disease,” he said. “That’s very embarrassing to them.”

Insel left the N.I.M.H. in 2015, and later confessed that one of the reasons he did so was this same dispiriting realization. In a 2017 interview, he elaborated on his departure. “I spent thirteen years at N.I.M.H. really pushing on the neuroscience and genetics of mental disorders,” he said. “And when I look back on that I realize that while I think I succeeded at getting lots of really cool papers published by cool scientists at fairly large costs—I think $20 billion—I don’t think we moved the needle in reducing suicide, reducing hospitalizations, improving recovery for the tens of millions of people who have mental illness. I hold myself accountable for that.” When I spoke to Insel recently, he said, of rdoc, “I think it became an academic exercise. . . . You want to pick up measures that actually are of value to patients, families, and providers. And rdoc got way too complicated. It wasn’t really tied to clinical outcomes in a way that would matter.”

Meanwhile, a decade spent in search of so-called biomarkers crushed clinical investigators who had been trained to use descriptive DSM categories and who aimed their studies at symptom relief and therapeutic impact. By 2015, only around ten per cent of the N.I.M.H. budget was directed toward clinical research. Psychotherapy researchers, who had made much progress before rdoc, saw their funding dry up. Barbara Milrod, of Albert Einstein College of Medicine, told me, “I am angry, as a psychiatrist and as a clinical researcher, because we are doing nothing for our patients and losing generations of researchers and methods.”

Imagine a lighthouse keeper whose beam and horn guide ships in storms. Imagine that this operator, in an epiphany, realizes that all the difficulties he encounters come from water and air. He determines to study the chemistry of H2O and O2. This steward is no eccentric but rather a prestigious and powerful voice in his field; thanks to his financial largesse, many others follow his lead. They all stop worrying about their beacons and foghorns, and no longer bother with weather reports, tides, or distress signals from vessels. When called to task, they assure those whose loved ones have drowned that, though it might take fifty or a hundred years, the riddle of water and air will eventually be solved.

Sound ludicrous? But where were our psychiatric sentinels as opioids, alcoholism, and suicide ripped through the struggling towns of middle America? It took two economists, Anne Case and Angus Deaton, vacationing in Montana, to notice the early mortality of white males around them, and, in 2015, alert us to the shocking numbers of what they called “deaths of despair.” Why did the mental-health-research community fail to notice this? One reason, perhaps, is that there is no gene for social collapse.

The covid pandemic, with its complex biopsychosocial effects, was a cataclysm that emerged from our environment, and its psychiatric consequences have only begun to be understood. Much of its impact, I fear, might simply be ignored, because many of our lookouts remain intently focussed on threats from the opposite end of the causal spectrum. While we concentrated on things like neural circuits, a viral menace attacked. The fear, helplessness, and isolation that it created roiled our communities and families, put great pressure on our emotional and psychic lives, and deeply affected our children. We need to pivot so as to better comprehend those realms, for the pandemic has thrown overly reductive assumptions about neuroscience into contradiction. Yes, malfunctioning brains can make us ill, but three years of death, uncertainty, and angst have demonstrated a homespun truth: the world can really mess you up.

The United States has the most funding for psychiatric research in the world, arguably the greatest array of professional talent, and significant private and public capacities. And yet the rising tide of mental illness after covid will only highlight how our social contract with those patients has long been broken. The idea that shelter and humane care are human rights has dedicated advocates but little political power. In addition, although clinicians are armed with medications and therapies, they have long been pleading for new and better tools. Guidance about what this once-in-a-century pandemic might bring their way should come from our scientific and public-health leaders in Washington, but they are divided, with separate fiefdoms for psychiatric research, alcohol abuse, drug abuse, epidemiology, and the delivery of services. We suffer from systemic failures that seem to be no one’s responsibility.

A notable exception, Vivek Murthy, the Surgeon General, has called attention to the post-pandemic psychiatric crisis, citing burnout among frontline health workers, a spike in teen suicide, and an “epidemic of loneliness and isolation.” But who will take up his call? The National Institutes of Health has created the recover initiative, which will support studies of the medical aftereffects of covid, and Congress has allocated a small amount of money directly to the N.I.M.H. for covid-targeted research. It’s not obvious what will happen when those funds run out.

To be clear, no one I spoke with advocated for calling off the Mars mission to understand the brain; exciting work is being done in optogenetics, in circuit dynamics, and in mapping the brain’s structural network (the “connectome”), to name just a few domains. It is critical that the U.S. invest in such basic research. Similarly, it would be unconscionable not to pursue solid, clinically relevant neuroscience. But there needs to be an adjustment. When I spoke to the present N.I.M.H. director, Joshua Gordon, he admitted that the introduction of rdoc had come at a cost. “It wasn’t communicated to the scientific community in a way that they understood. They took it as a kind of severing of the N.I.M.H. from diagnostic frameworks,” he said. “In my opinion, what should have been said was that it’s clear that there’s heterogeneity within our disorders, and there’s overlap across our disorders. The diagnostic labels are useful. But they have not proven tremendously useful in terms of uncovering biology.” Since Gordon’s appointment, in 2016, the N.I.M.H. has somewhat relaxed its focus on rdoc methodology. When I queried him about its value, he said, “Certainly I emphasize it less than my predecessor did.” Yet rdoc’s adoption reflected decades of at times quite strident belief that the causes of all “real” psychiatric illness could be captured by clinical neuroscience. These may not be commitments that can be easily undone.

Surrounded by this jarring disjunction between high-minded science, clinical urgency, and human suffering, I was reminded of my year as a medical intern, when a different terrifying infection was sweeping the country. On New Year’s Eve, 1987, I held a young man’s feverish hand as he fought to breathe. By then, scientists had isolated H.I.V., and the National Institute of Allergy and Infectious Diseases, led by Anthony Fauci, had begun research on a vaccine. Access to possible drugs was stalled, while gay men perished. A community rose up in protest. Fauci now recalls meetings that he had with act up and one of its leaders, Larry Kramer, as critical to the realignment of his priorities. Thankfully so. If the government had bet the house on an H.I.V. vaccine, we would still be waiting. Instead, accelerated and liberalized clinical protocols, “short-term” fixes, and deeper collaboration saved countless lives.

Today, the covid pandemic may be over, but our psychiatric crisis continues. It should serve as an alarm that shakes us out of our slumber and reframes our thinking. We need to balance our mental-health efforts to include funding more clinical trials, actively researching sociological and psychological determinants of mental health and illness, revitalizing and refining public-health efforts for early treatment and prevention, and looking for innovative ways both to care for the underserved and to provide humane asylum. Will we? Indifference, bureaucratic rigidity, and ideological opposition will likely resist such changes. Back in 1987, months before I sat up with my dying patient, act up formed. What will it take this time, I wonder, to remake our future? ♦

Medicaid is our social safety-net program in the United States that provides health coverage for some of the country’s most vulnerable citizens. It is essential for people with serious mental illnesses. Sadly, Medicaid law contains the IMD exclusion provision, which excludes payment for services for those unfortunate people needing long-term in-patient care. The IMD exclusion is a significant barrier to meaningful treatment for people with serious mental illness (SMI).

In addition, failing to recognize that involuntary treatment is required for many people with SMI has led to many individuals living lives without dignity on the streets or being punished in our jails and prisons.

There are many reasons why more Medicaid services are needed for the seriously mentally ill:

  • Rising Prevalence: The number of people diagnosed with serious mental illnesses is rising. As the population increases and the stigma around mental health starts to fade, more individuals seek help. This calls for a proportional increase in services. We have not seen this happening in AZ.
  • Complex Needs: Individuals with serious mental illnesses often require comprehensive, long-term, individualized care that can include therapy, medications, crisis services, and sometimes even inpatient care. The current inpatient stays are relatively short, almost always under the 15-day IMD cap. There is no artificial capitation for other medical conditions.
  • Coexisting Conditions: Many people with serious mental illnesses have co-occurring physical health issues or substance use disorders. They need integrated care services that can address all their health needs simultaneously. There is an attempt at integrated care, but there are no shining examples I am aware of.
  • Societal Benefits: Comprehensive services can reduce societal costs, such as homelessness, incarceration, and emergency medical care. Individuals with untreated mental illness often end up in emergency rooms, the criminal justice system, or living homeless, which are more costly interventions than preventive and therapeutic services.
  • Economic Considerations: Early and consistent treatment can help individuals with serious mental illnesses maintain employment and contribute to the economy. Without adequate services, these individuals are at a higher risk of unemployment and homelessness, increasing the economic burden on society.
  • Crisis Prevention: Regular access to treatment can help prevent mental health crises. Crises not only endanger the individual but also place a strain on emergency services, hospitals, and the broader community. Unfortunately, there are many police encounters with individuals in crisis who end up injured, incarcerated, or dead due to the symptoms of their disease.
  • Housing Stability: Stable housing is crucial for recovery. Sadly Medicaid does not pay for housing, only treatment when medically necessary. Refer to the ASU Morrison Institute Housing is healthcare to understand that it is not only the right thing to do for the patient but also saves society about 30% over the cost of treating unhoused people with serious mental illness.
  • Better Outcomes: Continuous access to mental health services has led to better health outcomes and quality of life. Medicaid can fill the gap, ensuring the most vulnerable have consistent access to these essential services. Providing the entire continuum of care is available.
  • Stigma Reduction: By increasing the availability of services and prioritizing mental health, society takes a step toward reducing the stigma surrounding mental illness. This can encourage more individuals to seek help when they need it. Receiving care early is essential to stopping episodes of psychosis and protecting the brain.
  • Future Savings: Investing in mental health now can lead to savings in the future. Providing comprehensive mental health services through Medicaid makes individuals less likely to require more intensive and costly interventions later on. Again refer to the ASU Morrison Institute study.

New York and California have seen the results of not enforcing treatment. Each is now taking small steps to reverse the substantial number of homeless people with serious mental illness. In summary, expanding Medicaid services for the seriously mentally ill is not only a moral imperative, considering the vulnerable nature of this population, but it’s also a wise investment. It can lead to better health outcomes for individuals, reduce societal costs in other sectors like criminal justice, and result in a healthier, more productive, and safer society.

Laurie Goldstein

ACMI

**************************************************************************************************************************************************************************************************

Bill aims to support people with serious mental illnesses (nystateofpolitics.com) published August 1st 2023

The bill was introduced by Sen. Kirsten Gillibrand and Rep. Dan Goldman. (Spectrum News NY1)

POLITICS

N.Y. bill aims to bolster services for people with serious mental illnesses

BY PATRICK ADCROFT NEW YORK CITY

PUBLISHED 3:30 PM ET AUG. 01, 2023

Sen. Kirsten Gillibrand, Rep. Dan Goldman and Rep. Jerry Nadler on Tuesday touted legislation aimed at strengthening access to medical care for people living with serious mental illnesses.

The “Strengthening Medicaid for Serious Mental Illness Act,” if passed, would generate new services under Medicaid designed specifically for people living with mental illnesses like schizophrenia, bipolar disorder and major depressive disorder, the lawmakers said during a news conference at Manhattan’s Fountain House.


What You Need To Know

·   A bill introduced by Sen. Kirsten Gillibrand and Rep. Dan Goldman in June, the “Strengthening Medicaid for Serious Mental Illness Act,” aims to strengthen access to medical care for people living with serious mental illness
 
·   Gillibrand, Goldman and other New York elected officials touted the legislation during a news conference at Manhattan’s Fountain House on Tuesday
 
·  The legislation, if passed, would generate new services under Medicaid designed specifically for people living with mental illnesses like schizophrenia, bipolar disorder and major depressive disorder

The legislation would also set a national standard for care for people with serious mental illness and incentivize states to provide services to treat them.

“Those with serious mental illness have often found themselves in a devastating cycle: going from hospitals to jails to the streets, and back around again,” said Gillibrand, who first introduced the legislation along with Goldman in June.

“Frankly, it’s unacceptable and it’s inhumane,” she added. “It’s a major issue for public safety and it’s a major issue for caring for our families.”

The legislation would provide states with the ability to offer services that would help people with severe mental illness get and keep jobs. It would also allow states to provide access to support services and mobile crisis intervention teams.

States would also be required to abide by certain standards of care, such as tracking disparities in treatment, according to a news release from Gillibrand.

“We are still struggling in the aftermath of COVID, which interrupted mental health treatment for so many, especially the low-income and underprivileged individuals in our community who rely on government services, the community services that were halted,” Goldman said.

“And that’s why this bill is so important,” he added. “It’s important that we get people the treatment they need in a way that works.”

Photo by Scott Lorsch on Unsplash

Advocates for specialized institutions (sometimes referred to as “asylums”) for those with severe mental illness, particularly those who have not benefitted from community treatment, emphasize the following points:

  1. Specialized Care and Treatment: Traditional asylums in the past were often criticized for inhumane conditions and poor treatment. However, a modern, well-regulated institution can provide specialized, 24/7 care tailored to the needs of those with severe mental illnesses. Such a facility would be equipped with trained professionals and evidence-based therapeutic techniques to assist in recovery.
  2. Safety and Security: For individuals with severe mental illness who might be a danger to themselves or others, an institution can provide a safe environment. This includes preventing self-harm, ensuring patients receive their medications, and protecting the broader community from potential harm.
  3. Comprehensive Services Under One Roof: An institutional setting can bring together various services—medical, therapeutic, occupational, and recreational—all in one place. This can ensure a holistic approach to care that might be hard to coordinate in a community setting.
  4. Stabilization and Structure: Some individuals with severe mental illness benefit from a structured environment where routines are established, and there are clear expectations and supports in place. An institution can offer this consistent environment, which can be therapeutic in and of itself.
  5. Potential to Alleviate Homelessness and Incarceration: Many individuals with untreated severe mental illnesses end up homeless or in the criminal justice system. Specialized institutions could serve as an alternative to these outcomes, providing care and shelter to those who might otherwise be left to the streets or incarcerated.
  6. Family and Community Support: Having a loved one with severe mental illness can be overwhelming for families, especially when community resources are lacking or ineffective. Institutions can provide respite for families, ensuring their loved ones are cared for while they also receive support and education about the illness.
  7. Research and Training Opportunities: Specialized institutions can become centers of excellence for research into severe mental illnesses, promoting the development of innovative treatments and therapies. They can also serve as training grounds for professionals in the field.

However, it’s crucial to consider such institutions’ potential pitfalls and criticisms. It’s essential that they don’t revert to past abuses, respect patient rights, and don’t become a default option at the expense of community-based resources and support. Advocates for these institutions stress the importance of a well-regulated, humane, and patient-centered approach.

Laurie Goldstein

ACMI

*************************************************************************************************************************************************************************************

It’s Time to Bring Back Asylums

Published in the WSJ

By  David Oshinsky

July 21, 2023 10:56 am ET

The ongoing saga of the severely mentally ill in America is stirring attention again in a sadly familiar way. In Los Angeles in early 2022, a 70-year-old nurse was murdered while waiting for a bus, and two days later a young graduate student was stabbed to death in an upscale furniture store where she worked. That same week in New York City, a 40-year-old financial analyst was pushed onto the subway tracks as a train was arriving, killing her instantly.

All three assaults, random and unprovoked, were committed by unsheltered homeless men with violent pasts and long histories of mental illness. In New York, the perpetrator had warned a psychiatrist during one of his many hospitalizations of his intention to commit that very crime.

“The death of Jordan Neely speaks volumes about the public’s fear of aggressive and sometimes violent behavior of the mentally ill.”

Then came the chance encounter this May that led to the death of Jordan Neely on a Manhattan-bound subway car. Homeless and schizophrenic, Neely had spent most of his adult life in and out of emergency rooms, psychiatric wards and prison. He had 42 prior arrests, mostly for nuisance crimes, but also for assault. He’d recently pleaded guilty to punching an elderly woman in the face, fracturing her eye socket.

What happened in the moments leading up to his death is still in dispute. While a jury will decide whether another passenger’s chokehold on Neely was second-degree manslaughter or an act of self-defense, the attention the incident received speaks volumes about the public’s fear of the aggressive and sometimes violent behavior of the mentally ill. Most of all, Neely’s death highlights the failures of a mental health system that allows profoundly disturbed people to slip through the cracks.

On an average night, according to the U.S. Department of Housing and Urban Development, close to 600,000 people in the country will be homeless—a figure seen by many as an undercount. More than 40% will be “unsheltered,” or “living in places not suitable for human habitation,” and about 20% will be dealing with severe mental illness.

Experts sharply disagree about the contribution of homelessness to rising crime rates. Some emphasize that the most of these crimes are low-level victimless offenses, such as loitering or public urination. But others note the disproportionately high level of all crimes, including assaults and homicides, committed by those battling homelessness and mental issues simultaneously.

Had Jordan Neely and the others been born a generation or two earlier, they probably would not have wound up on the streets. There was an alternative back then: state psychiatric hospitals, popularly known as asylums. Massive, architecturally imposing, and set on bucolic acreage, they housed close to 600,000 patients by the 1950s, totaling half the nation’s hospital population. Today, that number is 45,000 and falling.

The term “asylum” implies refuge for those in distress.

Asylums were created for humane ends. The very term implies refuge for those in distress. The idea was to separate the insane, who were innocently afflicted, from the criminals and prostitutes who were then commonly referred to as the “unworthy poor.” Asylums were popular because they provided treatment in isolated settings, far from temptation, while relieving families of their most burdensome members.

But “insanity” in these years cast a very wide net. A typical asylum included patients who were suffering from alcoholism, dementia, depression and epilepsy, as well as such now defunct diagnoses as “lunacy” and “melancholia.” The usual stay was marked in years, not months, as evidenced by the rows of crosses in asylum graveyards.

Over time, the number of institutionalized patients far outpaced the state’s willingness to support them. Funding and oversight disappeared. And this, in turn, produced a flood of exposés—some embellished, others sadly true—portraying these institutions as torture chambers where icepick lobotomies, electric shock, sterilization and solitary confinement turned humans into zombies.

A seemingly revolutionary solution soon appeared—a new drug with the potential to treat psychotic disorders such as schizophrenia and bipolar disorder. First marketed in 1955 under the brand name Thorazine, it became the psychiatric equivalent of antibiotics and the polio vaccine. Why keep patients locked away in sadistic institutions when they could be successfully medicated close to home?

The promise of Thorazine coincided with a dramatic assault upon traditional psychiatry led by radical critics such as Michel Foucault and Thomas Szasz. Asylums existed to enslave those who ignored society’s norms, they believed. Who could say with assurance that the people locked away in these places were any more or less insane than the authorities who put them there? It seemed a perfect fit for the 1960s, appealing to emerging rights groups and a counterculture scornful of elites. “If you talk to God, you are praying,” Szasz declared. “If God talks to you, you are schizophrenic.”

President John F. Kennedy signs the Community Mental Health Act, October 1963. The law aimed to shift treatment of the mentally ill from asylums to local clinics, but the results were likened by one critic to ‘a psychiatric Titanic.’ PHOTO: BILL ALLEN/ASSOCIATED PRESS

In October 1963, President John F. Kennedy put his signature to the last bill he would ever sign—the Community Mental Health Act. It aimed to demolish the walled-off world of the asylum in favor of 1,500 local clinics where patients could receive the drugs and therapies they needed. Kennedy had a personal stake in the legislation: His sister, Rosemary, had undergone an experimental lobotomy that left her severely disabled. On paper, at least, deinstitutionalization seemed both more humane and more likely to succeed. Then reality set in.

Closing the asylums was the easy part. Getting people to accept a mental health clinic next to their local church or elementary school proved a much tougher sell. Asylum inmates returned home to find their former neighbors unprepared and often unwilling to help. Most of the clinics never materialized. And the promise of Thorazine was blunted, in part, by its nasty side effects. Surveys of those released from state asylums found that close to 30% were either homeless or had “no known address” within six months of their discharge. One critic likened it to “a psychiatric Titanic.”

A few voices had predicted as much. In 1973, a Wisconsin psychiatrist named Darold Treffert wrote an essay about the dangerous direction in which his profession was headed. His colleagues had become so fixated on guarding the patient’s civil liberties, he noted, that they had lost sight of the patient’s illness. What worried him was the full-throated endorsement of recent laws and court decisions that severely restricted involuntary commitments. What purpose was served by giving people who couldn’t take care of themselves the freedom to live as they wished? He titled his piece, “Dying With Their Rights On.”

Treffert was referring to cases like Lessard v. Schmidt (1972), where a federal court ruled that involuntary commitment must be limited to cases involving the “extreme likelihood” that someone “will do immediate harm to himself or others”—a very strict standard. Three years later, the Supreme Court tightened things further by asserting that authorities had been too cavalier in locking away the “harmless mentally ill.” In O’Connor v. Donaldson, it declared: “Mere public intolerance or animosity cannot constitutionally justify the deprivation of a person’s physical liberty.”

Enter Joyce Brown, a 40-year-old woman who went by the street name “Billie Boggs.” The year was 1987, and Brown was living atop a heating vent on New York’s tony Upper East Side. It was a tense time for the nation’s largest cities, with exploding crime rates, rampant crack addiction, the AIDS crisis and thousands of homeless people camping in parks, bus stations, subway tunnels and doorways. Under extreme pressure, New York’s Mayor Edward Koch authorized the involuntary commitment of those living unsheltered on the streets. Brown was the first to be confined.

Little was known about her beyond her struggles with heroin and a diagnosis of schizophrenia following her eviction from a New Jersey shelter. Brown was more of a nuisance than a threat to the neighborhood—stopping traffic, screaming at pedestrians, using the sidewalk as her toilet. Social workers who periodically visited her worried that she ate poorly, never bathed and lacked the clothing to handle New York’s brutal weather. Some viewed her as self-negligent to the point of being suicidal.

Taken to Bellevue Hospital, Brown was bathed, deloused and given antipsychotic drugs. Four psychiatrists confirmed the diagnosis of chronic schizophrenia. Bellevue contained a courtroom where patients could challenge their confinement before a state-appointed judge. Most were represented by a public defender, but the American Civil Liberties Union took on Brown’s case, claiming that her confinement violated federal court guidelines.

Ironically, Brown turned out to be her own best witness. Carefully medicated, she testified thoughtfully enough to convince the judge that the evidence before him was too ambiguous to merit the loss of her liberty. But he surely was conflicted, writing: “There must be some civilized alternatives other than involuntary hospitalization or the street.”

Joyce Brown, whose involuntary commitment to New York’s Bellevue Hospital sparked a civil-rights lawsuit, speaks at Harvard Law School in 1988. PHOTO: CAROL FRANCAVILLA/ASSOCIATED PRESS

Unfortunately, there weren’t. An appeals court reversed the decision to free Brown, leading her to refuse all medication. Another trial was held to determine whether antipsychotic drugs could be forced upon her, and this time she prevailed. The city, weary of lawsuits, chose to discharge her rather than to appeal.

Brown became an instant celebrity. She traveled the TV talk show circuit as “the most famous homeless person in America” and even gave a lecture of sorts at Harvard Law School. “I like the streets, and I am entitled to live the way I want to live,” she explained. Offered a room at a “residential hotel,” she quickly returned to the life that she knew best, panhandling for drug money at the Port Authority Bus Terminal before fading from public view. She died in 2005 at age 58.

The questions her case raised, however, are more relevant than ever. How does a civilized society deal with severely mentally ill people who refuse assistance? What constitutes the sort of behavior that requires forced hospitalization? Is it time to bring back the asylum?

These issues are intertwined with a fundamental change brought about by deinstitutionalization. Put simply, civil libertarians and disability rights advocates have largely replaced psychiatrists as the arbiters of care for the severely mentally ill. And a fair number of them, with the best of intentions, seem to view the choices of those they represent as an alternative lifestyle rather than the expression of a sickness requiring aggressive medical care.

The enormous vacuum created by deinstitutionalization has been a calamity for both the mentally ill and society at large.

The role once occupied by the asylum has been transferred to the institutions perhaps least able to deal with mental health issues—prisons and jails. The number of inmates in the U.S. in 1955 was 185,000; today, that figure is 1,900,000.

Unsurprisingly, the nation’s three largest mental health facilities are the Los Angeles County Jail, the Cook County Jail in Chicago, and Rikers Island in New York City. Approximately one quarter of their inmates have been diagnosed with a serious mental disorder.

In this massive system, the mentally ill are less likely to make bail, more likely to be repeat offenders and far more likely to be victimized by other inmates. Given the sheer numbers, maintaining order in these prisons and jails depends heavily on antipsychotic medication. It’s hard to imagine a worse environment for the safety, much less the treatment, of the mentally ill.

Meanwhile, state mental hospitals continue to shrink. Gone is the laundry list of afflictions that marked asylum life in the 1950s. The majority of the current patients are there “involuntarily”—people who have been judged a danger to themselves or to others, who have been found not guilty of a crime by reason of insanity, or who are being evaluated for their competency to stand trial. Because so many psychiatric beds have disappeared, the waiting period for admission can take months, which means that inmates languish in jail without having been convicted of a crime.

In the past decade, a growing number of scholars from across the ideological spectrum have suggested a return to asylums. Among them is Ezekiel Emanuel, a leading medical ethicist, who joined with two colleagues in 2015 to recommend the building of “safe, modern and humane” state institutions to end the revolving door of homelessness-hospitalization-prison that passes for policy today.

Actress Louise Fletcher as the sadistic Nurse Ratched in the 1975 film ‘One Flew Over The Cuckoo’s Nest,’ starring Jack Nicholson (right). PHOTO: UNITED ARTISTS/GETTY IMAGES

The model they suggested is the Worcester Recovery Center in Massachusetts, a facility for 320 long-term patients with private rooms and “a recovery-inspired residential design.” Opened in 2012 on the grounds of a long-abandoned state asylum, it cost $300 million to complete, making it one of the most expensive non-road construction projects in the state’s history.

There is little doubt of the need for it, and the early signs, including surveys of recovery outcomes, are encouraging. Since the goal is to serve patients, rather than to warehouse them, the price can be steep. In 2015 Massachusetts spent $55,000 per prison inmate, with some additional costs for those with serious mental health issues. Meanwhile, the Worcester Recovery Center, with an annual budget of $60 million, spent close to four times that sum per patient. How this will play out in the long run, and how many other states will follow, remains to be seen.

The very word “asylum” brings shivers to those old enough to remember its abuses. It has a disturbing cultural legacy to confront in the sadistic Nurse Ratched of “One Flew Over the Cuckoo’s Nest.” Bringing it back in any form will face the twin obstacles of cost and image. But for the most vulnerable among us, who exist in a world of peril to themselves and to others, it is a far better option than the alternatives of homelessness and incarceration.

David Oshinsky directs the Division of Medical Humanities at NYU Langone Health. His books include “Bellevue: Three Centuries of Medicine and Mayhem at America’s Most Storied Hospital” and “Polio: An American Story,” which won the 2006 Pulitzer Prize for history.

***

Photo illustration caption: Clockwise from top left: A patient record from a state mental hospital in Massachusetts; Bellevue Hospital in 1962; a sign at a protest following the death of Jordan Neely, May 5; a New York subway train; a doctor examines a patient at a state mental hospital in New York, 1937; a bottle of Thorazine, the antipsychotic drug introduced in 1955; the Twin Towers jail in Los Angeles; nurses restrain a patient at an asylum in Ohio, ca. 1946.

Source photographs for illustration: Max Denisov/Unsplash; Vlad Hilitanu/Unsplash; Renan Kamikoga/Unsplash; Tim Gouw/Unsplash; Diego Jimenez/Unsplash; Jerry Cooke/Getty Images; John Tlumacki/The Boston Globe/Getty Images; ROBYN BECK/AFP/Getty Images; Spencer Platt/Getty Images; Jack Harris/Associated Press; School of Pharmacy, University of Wisconsin, Madison, Wisconsin/Smithsonian Institution; Alfred Eisenstaedt/The LIFE Picture Collection/Shutterstock

Copyright ©2023 Dow Jones & Company, Inc. All Rights Reserved. 87990cbe856818d5eddac44c7b1cdeb8

Appeared in the July 22, 2023, print edition as ‘It’s Time To Bring Back Asylums Asylums for Helping The Mentally Ill’.SHOW CONVERSATION (834)

The Institutions for Mental Diseases (IMD) exclusion is a policy that restricts Medicaid funding for certain residential facilities with more than 16 beds, primarily focusing on those providing mental health and substance abuse treatment. While the policy aims to regulate and improve the quality of care, it inadvertently creates discrimination and prejudice against individuals with serious mental illness (SMI). This case highlights the adverse effects of the IMD exclusion policy on vulnerable individuals and the need for reforms to ensure equitable access to mental healthcare.

Case Summary: John, a 32-year-old man diagnosed with schizophrenia, resides in a state that strictly enforces the IMD exclusion policy. Due to the limited availability of community-based mental health services, John has been repeatedly denied admission to residential treatment facilities due to their size exceeding the exclusion threshold. This policy restriction exacerbates John’s condition, denying him access to appropriate care and causing a detrimental impact on his overall well-being.

  1. Limited Access to Intensive Treatment: John requires intensive psychiatric care and monitoring due to the severity of his symptoms. However, as a result of the IMD exclusion, the only available options for him are outpatient clinics or smaller residential facilities that lack the resources and staff to provide the level of care he needs. This restricted access prevents him from receiving adequate treatment and support to manage his condition effectively.
  2. Increased Risk of Homelessness and Incarceration: Without access to appropriate residential treatment, John’s mental health deteriorates rapidly, leading to frequent hospitalizations or encounters with law enforcement. The lack of suitable options under the IMD exclusion policy forces individuals like John into a cycle of homelessness or incarceration, where their mental health worsens, perpetuating the stigmatization of mental illness.
  3. Disproportionate Impact on Low-Income Individuals: The IMD exclusion disproportionately affects low-income individuals who rely on Medicaid for their healthcare needs. Private residential facilities, not subject to the exclusion, often charge exorbitant fees, making them unaffordable for those with limited financial resources. Consequently, the policy further entrenches socioeconomic disparities and denies individuals from lower-income backgrounds equal access to critical mental health services.
  4. Inequity in the Healthcare System: The IMD exclusion policy perpetuates a two-tiered healthcare system, with individuals with SMI receiving suboptimal care compared to those with physical health conditions. While patients with chronic medical conditions can access specialized facilities without similar restrictions, individuals with mental illnesses face discrimination due to the arbitrary limitations imposed by the exclusion policy, denying them their right to equitable healthcare.

Conclusion: The IMD exclusion policy, though well-intentioned, inadvertently perpetuates discrimination and prejudice against individuals with serious mental illness. The policy’s impact on individuals like John highlights the urgent need for reforms to ensure equitable access to comprehensive mental healthcare. Revisiting the IMD exclusion and advocating for increased funding, expanding community-based treatment options, and encouraging parity between mental and physical health services are essential steps towards dismantling the systemic barriers faced by those with SMI.

Laurie Goldstein

****************************************************************************************************************************************************************************************************

After deinstitutionalization, California has tragically come full circle on mental illness treatment – CalMatters

BY GUEST COMMENTARYJULY 12, 2023

A person sits in a makeshift tent along a barbed wire fence near Highway 99 in southwest Fresno on Feb. 11, 2022. The fence blocks out a grass area that used to be a homeless encampment. Photo by Larry Valenzuela for CalMatters/CatchLight Local
A person sits in a makeshift tent along a barbed wire fence near Highway 99 in southwest Fresno on Feb. 11, 2022. The fence blocks out a grass area that used to be a homeless encampment. Photo by Larry Valenzuela for CalMatters/CatchLight Local

IN SUMMARY

California psychiatric hospitals began closing their doors in the 1960s, starting a nationwide movement known as “deinstitutionalization.” Today, most inpatient treatment for severe mental illness occurs behind bars. Two changes could help rectify this tragic reality.

GUEST COMMENTARY WRITTEN BY

Alice Feller

Alice Feller

Alice Feller is a psychiatrist and writer based in Berkeley. Her work has appeared in the Journal of the American Psychoanalytic Association, East Bay Express, Laney Tower and the opinion pages of the San Francisco Chronicle and New York Times.

Robbie, our young patient at the county hospital in San Mateo, believed his parents were trying to poison him. 

He refused to come into the house and foraged in the neighbors’ garbage cans for all his meals. Nevertheless, since he was able to survive on garbage, he was judged no longer in need of treatment. 

I was shocked. It was so callous – such a breach of our usual standard of care. But then I spent a year working as a staff psychiatrist at the county hospital in Oakland. I learned that Robbie’s experience was not out of the ordinary; it was the usual state of care in California.

In the 1960s, American psychiatric hospitals began to close their doors. The movement began in California, first with the large state hospitals and then the small community hospitals as well.

By 1994 nearly half a million former patients had been sent back to live with their families, who were often unable to care for them. A quarter million newly discharged patients ended up on the streets or behind bars. 

So many were incarcerated that jails and prisons have become our de facto mental hospitals. Today, the vast majority of inpatient psychiatric care in America is provided behind bars.

Deinstitutionalization,” as the movement to close these hospitals is known, began as a cost-saving measure. In 1965 the federal government abruptly withdrew its financial support for the state hospitals, as well as the small community hospitals providing psychiatric care. 

This was accomplished through a little-known law, the Medicaid IMD exclusion, passed by Congress in 1965 along with the creation of Medicaid. The provision forbids the use of Medicaid dollars to pay for care in a mental hospital. Any psychiatric hospital with more than 16 beds is forbidden to take Medicaid.

Hospital treatment for severe mental illness can mean the difference between life and death, but because of this law such treatment is specifically denied to the people who need it most. No other severe illness is subject to such discrimination.

We have come full circle from the early 19th century, when Dorothea Dix campaigned to rescue the mentally ill from the prisons where they languished, often under shockingly inhumane conditions. Due to her work, people with mental illness were rescued from prisons and cared for in hospitals. 

But today that trend has been reversed. Once again, Americans with serious mental illness are being warehoused out of sight in our prisons. And many more are living unsheltered on our streets. A third of our homeless population today suffer from untreated severe mental illness, most commonly schizophrenia.

Schizophrenia is a brain disorder. It affects 1 out of every 100 human beings on Earth. Good parenting doesn’t prevent it, and bad parenting doesn’t cause it. It begins in adolescence or early adulthood, and without treatment it will be permanently disabling. It leaves the afflicted person living in a psychotic world, unable to tell reality from delusion. 

Lives are derailed. Suicide is common.

Treatment requires early intervention by a specialized team of clinicians who collaborate on patient care. Unfortunately these dedicated programs are rare. Despite mountains of evidence showing their effectiveness, insurers refuse to cover early intervention programs.

While hospital care can provide stabilization and enable the patient to use outpatient treatment, insurance coverage for inpatient treatment is rare.

California can rectify this situation by obtaining a waiver of the IMD exclusion. We need to restore hospital care to stabilize our patients and enable them to use outpatient treatment. We need to mandate early intervention programs and require insurance coverage for this vital treatment. 

These two interventions would do more than anything else to help our mentally ill homeless citizens. It is not a simple lack of housing that leaves so many homeless. Like Robbie, our patient who ate out of garbage cans, they are unable to use available housing due to their mental illness.

Society Helping
Photo by Etactics Inc on Unsplash
Society Helping, Photo by Etactics Inc on Unsplash

Caring for people with serious mental illnesses, such as schizophrenia, bipolar disorder, or major depressive disorder, who also have anosognosia (a lack of awareness of their illness) is crucial for numerous reasons, and not providing necessary care can have detrimental effects.

  1. Preservation of Human Rights: All individuals, regardless of their mental health status, have a right to health and well-being. This right includes access to healthcare and social support. Ignoring or denying care to someone because they lack insight into their condition due to anosognosia infringes upon these rights.
  2. Health Consequences: Without proper care, individuals with serious mental illnesses and anosognosia are at risk of worsening symptoms. This can lead to significant health consequences, including higher rates of hospitalization, physical health problems, homelessness, and suicide.
  3. Social Consequences: Failure to provide care for individuals with serious mental illness and anosognosia has broader societal impacts. It can lead to increased homelessness, as individuals may be unable to maintain stable housing. Furthermore, untreated mental illness can also contribute to an increased burden on the criminal justice system, as these individuals may engage in behaviors that get them into legal trouble, often because they aren’t receiving the care they need. They typically are crimes related to their illness, such as trespassing, public disturbance, or petty crime, but they can sometimes be violent crimes.
  4. Economic Burden: Treating individuals with mental illnesses early and effectively is cost-effective. Hospitalizations, incarcerations, homelessness, and emergency services are all costly societal burdens. Providing continuous, comprehensive care reduces these costs in the long term.
  5. Family Impact: The family and loved ones of those with serious mental illness often bear a substantial burden when adequate care is not provided. This can strain relationships and cause emotional, physical, and financial hardship for the family members involved.
  6. Potential for Recovery: Many individuals with serious mental illness, once appropriately treated, can lead meaningful, productive lives. By providing necessary care, even when anosognosia is present, we increase the chances of these individuals gaining insight into their conditions, adhering to treatment, and experiencing recovery.
  7. Ethical Responsibility: As a society, we have an ethical responsibility to care for those who are most vulnerable, including individuals with serious mental illness. Anosognosia, as a symptom of these illnesses, should not exempt these individuals from receiving the care they need.

In conclusion, while anosognosia presents unique challenges in the care of individuals with serious mental illness, it is imperative that we continue to advocate for and provide necessary support and treatment. The human, societal, and economic costs of not doing so are simply too great.

Laurie Goldstein

*****************************************************************************************************************************************************************************************************

Posted by Twisted Sisters Advocacy & Activism for Serious Brain Disorders July 9th, 2023.

Anosognosia affects between 50% and 98% of people with schizophrenia, about 40% of people with bipolar disorder, and more than 80% of people with Alzheimer’s disease.

For a disease that demands treatment above all else, leaving someone with anosognosia alone on the streets until they die is a cruel and unusual punishment for a disease. Why do civil rights activists and disability activists keep harming our family members?  What’s the point of letting them deteriorate and preventing them from getting basic medical care?  In pursuit of an ideal?  Does it matter?  In my experience as a family member of someone who died as a result of severe mental illness and anosognosia symptoms, I am offended to my core by those who wish to maintain the status quo.

Civil and disability rights activism has a human cost here. It is of the utmost importance to recognize the suffering and struggles of those affected. It is also important to ensure that those who need medical care receive it. We do not let our Alzheimer’s patients with anosognosia roam the streets. We speak for them. We care for them. We need to demand more humane treatment for people with anosognosia from severe mental illnesses.

Activists for civil rights and disability are strangers to our loved ones.   They do not understand the pain and suffering we have been through.  There’s no personal connection between them and our loved ones.  No professional connection exists between them. They are not privy to the suffering of my loved one or have intimate knowledge of it.  Because #FamiliesLikeMine don’t have a right to treatment before tragedy strikes, the activists for civil rights can sleep soundly at night despite the pain they cause those whose loved ones die a slow, agonizing death.  What do citizens of this magnificent nation do when tragedy strikes beyond the individual suffering from a brain disorder? They scream, “Why didn’t the family act?  But, what can a family do if the law does not recognize their right to treatment?

As defined, anosognosia is not denial. Anosognosia is a mental illness in which the sufferer is unaware of their condition. A denial of anosognosia’s legitimate importance in the medical community and in our laws and policies is to ignore it. That is a denial.

It is not a denial of the experience of those with anosognosia, but rather a denial of the reality of anosognosia as a medical condition. We need to recognize anosognosia as a legitimate medical condition and ensure that our laws and policies reflect this understanding. This will ensure that individuals with anosognosia can access the care and treatment they need. 

#RIPMarkRippee #TreatmentB4Tragedy #HousingThatHeals #PassSB43ToSaveLives

The report from Treatment Advocacy Center has reported a two to three times higher prevalence of schizophrenia than previously reported. That’s indeed a significant update. It’s important to understand that schizophrenia spectrum disorders, which include schizophrenia, schizoaffective disorder, and schizophreniform disorder, are complex mental health conditions that can significantly impact a person’s thoughts, feelings, and behaviors. These disorders often emerge in early adulthood, and their symptoms can include hallucinations, delusions, thought disorders, and movement disorders, among others.

While alarming, this increase in reported cases may actually reflect improved diagnostic procedures, better awareness, and a decrease in stigma around mental health issues rather than an actual increase in the prevalence of the disease. As mental health issues become less stigmatized, more people might seek help and receive an appropriate diagnosis.

It’s also crucial to point out that a more accurate estimation of prevalence can lead to a more effective allocation of resources for treatment, support, research, and interventions. Understanding the true scale of a problem is the first step toward addressing it more effectively. Hopefully, this groundbreaking data can help steer the conversation toward more inclusive and comprehensive mental health services.

However, this data also highlights the urgent need for continued research into these disorders, as we still have a lot to learn about the exact causes, risk factors, and most effective treatments. Support from families, communities, and healthcare providers is crucial for those affected by these conditions. Furthermore, as societies, we must continue to work towards eradicating the stigma associated with mental health conditions and ensure access to necessary care and support.

Laurie Goldstein

RESEARCH WEEKLY: More people with schizophrenia in the U.S. than previously reported – Treatment Advocacy Center

By Elizabeth Sinclair Hancq

(June 28, 2023) Groundbreaking new data  released this week suggests there are 3.7 million adults living with schizophrenia spectrum disorders, including schizophrenia, schizoaffective disorder, and schizophreniform disorder. These results suggest that the number of individuals with schizophrenia spectrum disorders is two to three times higher than previously reported.  

The new data is from the Mental and Substance Use Disorders Prevalence Study , a national epidemiological survey that was conducted by RTI International and created and funded in 2019 by the Substance Abuse and Mental Health Services Administration. MDPS is unique, because trained clinicians conducted interviews with not only people living in households, but also individuals housed in prisons, state psychiatric hospitals, and homeless shelters, who had not been taken into account in previous estimates. The broader scope of those interviewed reflects much more accurate estimates of the prevalence of severe mental illness in the United States. Additionally, the incorporation of clinical interviews in the study design allows for more precise counts of people living with severe mental illnesses. 

The study was created by SAMHSA’s Assistant Secretary for Mental Health and Substance Use from 2017-2021 Dr. Elinore McCance-Katz to address major knowledge gaps in our understanding of the number of people living with serious mental illness in the United States. This was in response to a report published  by Dr. E. Fuller Torrey and me in “Psychiatric Times” calling attention to the major shortcomings of current prevalence estimates and the National Institute of Mental Health changing their prevalence estimate of schizophrenia, despite no new data being published. The attention that Treatment Advocacy Center’s report received provided the support needed to get the notice of policymakers to address the miscounting of severe mental illness in the U.S. and directly resulted in the creation of the MDPS project. 

MDPS is a cooperative agreement between RTI International and SAMHSA in collaboration with Columbia University/New York State Psychiatric Institute, Duke Health, University of Washington, Harvard University, University of Chicago, and Treatment Advocacy Center. 

62823 graphic

A deeper dive into the schizophrenia results 

MDPS found that 1.8% of adults aged 18-65 in the United States have a lifetime diagnosis of a schizophrenia spectrum disorder. Approximately two-thirds of those individuals, or 1.2% of the adult population, have a past-year diagnosis of schizophrenia spectrum disorder, meaning they experienced psychosis symptoms in the 12 months prior to being interviewed for the study.  

This translates to 3.7 million individuals with schizophrenia spectrum disorders living in the United States, 2.4 million of whom had active symptoms in the past year. This means there are two million more individuals living with a schizophrenia spectrum disorder in the United States than what is currently listed on the NIMH website .  

MDPS also asked participants about their treatment history in the past year. Of those with schizophrenia spectrum disorder, 73% received some type of treatment in the previous 12 months, according to the results. For those with schizophrenia spectrum disorder:

·    66% received some outpatient treatment. 
·    12% received some psychiatric inpatient treatment.  
·    69% received some type of psychotropic medication.

However, it is important to note that these treatment rates do not represent adequate treatment. In order to be categorized as receiving any treatment, an individual needs to have received some type of mental health treatment with at least one outpatient or inpatient visit and any type of psychotropic medication, not necessarily treatment specific for schizophrenia or psychosis. Therefore, the prevalence of having received meaningful treatment for their disorder is likely much lower than this.  

Policy implications

The results from this study have several important policy implications. First, the results indicate that sensitive, ethical, and rigorous research methods can be implemented to ensure that people with serious mental illness are more accurately measured in epidemiological research, including those living in non-household settings. Second, the results show there are significantly more treatment and other social services needed for the almost two million more people living with schizophrenia in the United States than previously measured. Severe mental illnesses like schizophrenia often require intensive treatment that depends on local, state, and federal resources to fund and provide the services. Policy leaders should utilize this new data to understand their community needs and allocate resources appropriately.  

The implications of the mistakes of the past are profound – underestimating the number of people with severe mental illness almost certainly contributes to the lack of adequate treatment and other services for these individuals with the most severe of psychiatric disorders. While the MDPS results are a major step in the right direction for the prioritization of people with severe mental illness, it took the attention garnered by Treatment Advocacy Center’s spotlight on the miscounting to get us there. We will continue to work to ensure there are continued efforts to accurately measure how severe mental illness impacts people, families, and society.  

Each year, we honor our founder, Dr. E. Fuller Torrey, through the Torrey Action Fund. The Torrey Action Fund is an annual fundraising campaign that supports everything we do, including critical research into severe mental illness and the publication of ResearchWeekly. Please consider donating to the Torrey Action Fund and help us continue our important work. TreatmentAdvocacyCenter.org/Donate

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

Thank you to those who could attend our May 2nd Stakeholder’s meeting.

Rachel Streiff, Dr. Robert Laitman, and Dr. Ann Mandel presented.

Below are the links to the webinar and slides:

Webinars – Association for the Chronically Mentally Ill (ACMI) (acmionline.com)

Downloads – Association for the Chronically Mentally Ill (ACMI) (acmionline.com)

Please join us for our next informational event on June 6th, 2023, at 4 PM AZ time. Experts will be discussing Assertive Community Treatment teams. (ACT)

ZOOM ACCESS INFORMATION:

https://us02web.zoom.us/j/86317760372?pwd=MUJLZnl3cTFqSDRrbllmOUI0Sk82Zz09

Meeting ID: 863 1776 0372 . . . . . . . . Passcode: 795774

One tap mobile +16699006833,,86317760372#,,,,*795774# US (San Jose)

Dial by your location +1 669 900 6833 US (San Jose)  + 1 253 215 8782 US (Tacoma)

What will it take for the Centers for Medicare & Medicaid Services (CMS) to realize that an amendment is needed? The cost to society of not providing care and treatment results in the use of emergency rooms, fire and police resources, and public community environments. It comes with a high price tag and dismal results. Refer to the report “Housing is Healthcare https://morrisoninstitute.asu.edu/housing_is_health_care.

People with serious mental illness live in squalor and end up dead or in jail or prison, often for crimes of street survival. Mental illness is the only “medical” condition that is criminalized (e.g., while psychotic, destroying property while failing, or not complying with officers, vocalizing against perceived threats, and creating a public disturbance ).

Laurie Goldstein- ACMI Vice President

 Matt H. Wade via commons.wikimedia.org | CC BY 3.0


REGULATION

Why One State Is Pushing Back Against Medicaid’s IMD Exclusion

By Chris Larson | January 20, 2023

Why One State Is Pushing Back Against Medicaid’s IMD Exclusion – Behavioral Health Business (bhbusiness.com)

New York state hopes to strengthen and remake state-managed behavioral health care by getting around the so-called IMD exclusion.

It’s doing so by securing federal Medicaid funds typically forbidden from covering facility-based behavioral health through its latest 1115 waiver amendment.

On Jan. 5, the Centers for Medicare & Medicaid Services (CMS) announced New York applied for a waiver to Medicaid’s now-antiquated institution for mental disease (IMD) exclusion. New York has asked for federal matching funds for Medicaid to be allowed to cover IMD services to address serious mental illness (SMI), substance use disorder (SUD) and serious emotional disturbance (SED) for adults and children.

New York specifically is seeking matching funds to reimburse short-term inpatient, residential and other services for SMI and SUD by IMDs. The state is also applying for matching funds to help transition patients in state psychiatric facilities back to the community up to 30 days before their discharge.

“The objective of the demonstration is to transform the role of some state psychiatric inpatient facilities and [SUD] residential treatment facilities, improve care transitions and access to community-based treatment and support services, and improve health and behavioral health outcomes in individuals with chronic and/or [SMIs] by transforming selected (pilot site) state-run psychiatric hospitals, facilities, and campuses from long-term care institutions to community-based enhanced service delivery systems,” the 1115 waiver amendment proposal states.

Since the beginning of Medicaid in 1965, the Social Security Act forbade federal funds for Medicaid from covering treatment provided by facilities where 16 or more beds are dedicated to treating behavioral health issues of people aged 21 to 64.

This move was intended to prevent states from offloading state psychiatric hospital costs on the federal government through the jointly funded and managed Medicaid program. It was also part of a political and regulatory retreat from treating behavioral health issues in large hospital-like settings, with champions of that movement including President John F. Kennedy.

The movement is sometimes referred to as deinstitutionalization.

However, some see the start of the deinstitutionalization movement as the start of the present psychiatric bed shortage, even within the federal government.

“There’s been an understanding in the past several years that this lack of federal funding contributes to high levels of unmet need,” Madeline Guth, senior policy analyst for Kaiser Family Foundation (KFF), told Behavioral Health Business. “The federal government has been providing some new mechanisms in the past few years for states to get an exception to this exclusion and get some federal financing for IMD services for non-elderly adults.”

The mechanisms, including the Medicaid 1115 waiver, allow states to secure some federal funding for certain IMD-related services.

Medicaid 1115 waivers, if approved by the federal government, allow states to experiment with different ways of implementing the Medicaid program.

There are three specific 1115 waiver benefit expansions that are related to behavioral health.

KFF, which tracks these waivers, found that 34 states have received approvals for an IMD exclusion payment exemption for SUDs. Additionally, 10 states have an exemption for mental health treatment, with 23 states having other exemptions for community-based health and behavioral health. 

Recent presidential administrations have enabled ways around the IMD exclusion through the 1115 waiver.

In July 2015, the Obama administration allowed for 1115 waivers to “develop a full continuum of care for individuals with SUD, including coverage for short-term residential treatment services not otherwise covered by Medicaid,” which included the IMD exclusion. 

The Trump administration announced in November 2019 that it approved the first-ever 1115 waiver related to IMD exclusion for SMIs and SEDs for adults and children.

Addressing the IMD exclusion did come up during the legislative work in 2022 that culminated in a sweeping behavioral health bill included in the omnibus funding bill passed just before Christmas. However, it was not included in the final bill that was signed into law on Dec. 29

While New York’s latest 1115 waiver application is not unprecedented, it does reflect a two-for-one application for two IMD exclusion exemptions — including both SMI and SUD funding.

Further, the New York waiver and the other waivers tracked by KFF show that states of all political leanings seek to address mental health via innovations to Medicaid.

Medicaid is the single largest payer of mental health services in the U.S. 

As we celebrate these holidays, let’s resolve to help the less fortunate.  The article below, by Steve Twist and Seth Leibsohn, vividly describes the misery of homeless persons in our community.  The most tragic are those who suffer from Serious Mental Illness (a pathological brain disorder) and co-occurring addiction and homelessness, living in our streets and jails.  Approximately 30% of homeless persons and 30% of incarcerated persons are Seriously Mentally Ill.   

Some are so mentally ill they believe their internal voices and delusions are real and, hence, they are pathologically unable to participate in their own treatment.  Some seek relief with illicit substances, which exacerbates their illness and misery.  To help these Chronically Mentally Ill persons, we need (a) more group homes with staff inside the homes 24 hours per day and 7 days per week, (b) well-regulated and secure residential treatment facilities from which residents cannot leave without authorization, to allow enough time for their treatment to become effective and (c) more beds and more accountability for care at the Arizona State Hospital, including removing the 55-bed limit on persons who reside in Maricopa County.

These three steps would provide better clinical outcomes at less cost than we now spend on recycling these persons through our emergency rooms, hospitals, short-term treatment programs, the streets, and jails, as their mental and physical health deteriorates.

We at the Association for the Chronically Mentally Ill (“ACMI”) welcome the attention Mr. Twist and Mr. Leibsohn bring to the problems described in their article.  And we believe the three steps indicated above would be significantly helpful as to the persons who are homeless due to their Chronic Mental Illness.

Dick Dunseath, Board Secretary of the Association for the Chronically Mentally Ill, and father of an adult suffering with Chronic Mental Illness

____________________________________________________________________________________________________________________________

Phoenix neglects homeless, ignores rampant crime in ‘the Zone’ (azcentral.com) published Nov 17th 2022

Phoenix neglects the homeless, ignores rampant crime in drug-riddled ‘Zone’

A homeless person, who was included in the annual Point-in-Time homeless street count, sleeps on the [edestrian bridge, Jan 25th, 2022, at Seventh and Lopp 202 in Phoenix (Mark Hemie/The Republic

Opinion: Nearly 1,000 homeless folks exist in disease, filth and crime. Phoenix is guilty of not only neglecting them but setting a policy to not enforce laws.

Steve Twist and Seth Leibsohn

Within an area of central Phoenix, bounded roughly between Seventh and 15th avenues and Jefferson and Harrison streets, there is an ongoing dystopia. Euphemistically and casually, it’s referred to as “the Zone.”

This past week, an unborn child, at 20-24 weeks of gestation, was found dead in the middle of the street – burned to death.

There, nearly a thousand of our fellow citizens exist in disease, filth and crime. They are “living” on the streets, in makeshift tents and under tattered tarps, amid scattered garbage, human waste, chronic illness, drug paraphernalia, fire and fear.

These are the unseen, forgotten and abandoned. They are the mentally ill, walking the streets, talking to the air, battling unseen demons. They are the drug and alcohol addicted, so desperate for another fix or drink they will do anything except seek treatment. They are routinely victims of both crime and neglect.

No decent society abandons its fellow citizens to live this way; Darfur or Beirut is not our human or scenic aspiration. Not only is Phoenix guilty of shocking neglect of these most needy among us, it seems to be the policy of the city not to use the tools at its disposal to intervene as a force for help and repair.

Drug crimes, assaults define life in ‘the Zone’

Nicky Stevens (left, with MAG) interviews a homeless person during Maricopa County's annual Point-in-Time count, Jan. 25, 2022, near Seventh Avenue and Roosevelt Street in Phoenix.
Nicky Stevens (left, with MAG) interviews a homeless person during Maricopa County’s Point-in-time count Jan 25, 2022, near Seventh Avenue and Roosevelt Street in Phoenix. Mark Henie/The Republic

Take the cases of crimes being committed against those in the Zone. Those living there are both routine and regular perpetrators and victims of serious crime. Not only are drug crimes the basis for regular escape and anesthesia, but sexual and aggravated assaults, robberies, arsons and thefts regularly define the contours of daily subsistence in the Zone.

In its 2020 report, Strategies to Address Homelessness, the city of Phoenix acknowledged, because of “Gaps,” “(t)he result is a fluctuating level of encampments along the streets, defecation in public – sometimes on private property, litter and debris, public drug use, lewd acts, theft and other property and violent crimes.”

It’s only become worse.

According to a recent complaint that area business operators filed in Maricopa County Superior Court, the city “refuses to enforce in and around the Zone quality-of-life ordinances prohibiting loitering, disturbing the peace, drunken and disorderly conduct, drug use, domestic violence, and obstructing streets, sidewalks, or other public grounds.”

So, the victims are abandoned.

People call for help thousands of times

Article 2 of our state constitution recognizes victims of crimes have the rights to “justice” and “to be treated with fairness, respect, and dignity.” These constitutional rights are promises made by the people of Arizona to every victim of crime, rights that city officials from the mayor on down have sworn to uphold.

Yet they have become a mockery as city officials refuse to enforce the very laws that have been written to protect victims from harm.

A model for others? Tempe parking lot will become affordable apartments

In this limited area of a few city blocks, in just the first nine months of this year, people have called the police for help more than 2,800 times. On average, in just a few square blocks, more than 10 people need help from the police every day.

Enforcing our criminal laws when a homeless person commits a crime against another homeless person does not stigmatize homelessness: it respects the rule of law and the rights of the victim essential to natural order. It recognizes a humanity that inheres in certain populations too many of us would, evidently, rather ignore. And these prosecutions can result in services being mandated for the homeless perpetrator.

Actively police this area. Enforce the law

But Phoenix is so wrapped in the dogma that pushes the failed policy of “housing first” and appeasement rather than treatment that it leaves the victims with neither justice nor respect. It leaves the homeless abandoned to the vicious cycle of desperation and misery.

The city has been justifying its shameless inaction because of a misreading of a recent 9th Circuit Court of Appeals case. But that case, Robert Martin v. City of Boise, noted, “Nor do we suggest that a jurisdiction with insufficient shelter can never criminalize the act of sleeping outside.

“Even where shelter is unavailable, an ordinance prohibiting sitting, lying, or sleeping outside at particular times or in particular locations might well be constitutionally permissible. So, too, might an ordinance barring the obstruction of public rights of way or the erection of certain structures.”

Start policing the Zone. Enforce the rule of law.

Start arresting those who break the law. Work with prosecutors and courts to screen for services and treatment. Start with a policy not of “housing first” but “protecting victims first.”

That is what a sane and civil community would do – before it spreads, and before more lives are brutalized and lost.

Steve Twist, a former chief assistant attorney general for Arizona, is the founder of the Arizona Voice for Crime Victims. Seth Leibsohn is a radio host at KKNT/960am and a senior fellow of the Claremont Institute, which advocates for limited government. Reach them at steventwist@gmail.com and SLeibsohn@salemphx.com.

Not all unsheltered populations require the same solution. Each population is unique. Project Haven for seniors is suited for the older population. The rate at which CASS was able to find permanent supportive housing (PSH) for the senior population during the pilot is impressive.

We need specialized solutions for people with serious mental illnesses, including supportive services. Without supportive services, most people will not be successful.

St. Vincent de Paul’s Washington Model is another smaller shelter in Phoenix that accommodates persons with pets and has onsite services.

____________________________________________________________________________________________________________________________

Phoenix leaders push for more shelters after 700+ unhoused people died in 2022

Phoenix leaders push for more shelters after 700+ unhoused people died in 2022 – Axios Phoenix posted 12/20/2022 by Jessica Boedm.

A rendering of The Haven after renovations. Courtesy of CASS

Homeless service providers in Phoenix are trying to quickly open new shelters across the Valley to address the growing number of people living on the streets.

Why it matters: Tuesday marks Homeless Persons’ Memorial Day, which is recognized on the winter solstice, the longest night of the year.

By the numbers: Homelessness in Maricopa County increased 22% over the past two years and more than 700 people experiencing homelessness have died this year. That’s up from about 550 last year.

Of note: Investigators reported an additional 450 deaths this year of people whose housing status could not be determined.

What’s happening: Government agencies and nonprofits are using federal pandemic-relief funds to provide new shelter options, especially for seniors and people with mental illnesses.

  • For years, the 600-bed Central Arizona Shelter Services (CASS) location was virtually the only option for emergency housing.
  • Now, local leaders are looking to create smaller facilities that address specific needs for different populations.

The latest: CASS is getting ready to renovate the old Phoenix Inn on Interstate 17 near Northern Avenue. When finished this summer, it will provide 170 beds for people 55 and older.

  • The Haven will have onsite medical care and other resources tailored to senior citizens.
  • CASS tested the model by renting out part of a hotel for seniors experiencing homelessness during the pandemic. Almost 70% of the people who stayed there got permanent housing, CEO Lisa Glow told us.
  • The group purchased the hotel outright with pandemic funding from the state housing department. The Phoenix City Council approved $4 million of their federal dollars for the renovation.

What she’s saying: “It’s a more dignified, safer space for [senior citizens] than having to navigate 600 beds,” Glow said.

Flashback: Earlier this year, St. Vincent de Paul opened a new 200-bed shelter in south Phoenix.

  • The Human Services Campus opened a 100-bed structure next to the CASS shelter and is prioritizing people with significant barriers to housing, including individuals discharged from hospitals.

What’s next: CASS is partnering with Copa Health to open a 54-bed transitional housing facility for people with a Severe Mental Illness in 2024 on the state hospital grounds.

  • Community Bridges, Inc., is looking to open a 100-bed behavioral health wellness center in Sunnyslope.