Most folks reading our blog know the long disturbing history of how we have gotten to such a sad place in the US in our treatment of people with serious mental illnesses. You may find it interesting, as I did, to learn that President Reagan made a major change (see below), which resulted in diminished community resources.

“That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.”

We need a federal plan that also involves the removal of the IMD exclusion. This mental health treatment exclusion is a parity violation. There is no such restriction on the length of stay or the number of medical beds in hospitals for medical conditions. Learn more about parity laws.

We need to focus on the people with SMI and not just general mental health!!

ACMI Board

Original article published by StatNews  on July 9th by Allen Frances

Original article

the Brain
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President Biden’s ambitious infrastructure plan has a glaring omission: It makes no effort to redress the awful reality that the United States has the worst mental health infrastructure of any country in the developed world.

People with mental illness, their families, and society at large are suffering the tragic consequences of four decades of mental health defunding and privatization: 90% of psychiatric beds have been closed; the once-wonderful system of publicly funded community mental health centers has been gutted; crisis response teams are almost nonexistent; and the available pool of affordable housing meets only a fraction of what’s needed.

In the Middle Ages, people with severe mental illness were often chained in prisons, begged on the street, or languished in poor houses. In modern America, 350,000 people with mental illness are in jails or prisons (often for nuisance crimes that could easily have been avoided had treatment been available); 250,000 of them are homeless; and the average life span of those with severe mental illness is 20 years less than that of the general population. The rate of dying from Covid-19 was three time higher among people with schizophrenia than in the general community — the second biggest risk factor after age.

Law enforcement officers, sheriffs, and judges have become the most vocal critics of the brutal criminalization of mental illness and are now among the strongest advocates for improved community treatment and housing. Forcing scared and untrained police officers to be first responders for people with untreated mental illness puts them in untenable positions and is partly responsible for police brutality and shootings. People with untreated mental illness are 16 times more likely to die during a police encounter than other civilians.

And once in jail, people with mental health issues are difficult to manage, deteriorate further, spend disproportionate time in solitary confinement, and have prolonged stays (especially since they have no place to go and no treatment if released).

How did the U.S. get into this mess? Massive and rapid deinstitutionalization of people with mental health issues began in the late 1950s for several reasons: partly because effective antipsychotics had been discovered; partly as a humanitarian response to the horrors of the overcrowded “snake pit” state psychiatric hospitals; partly as a cost-cutting method (since mental health was often the biggest and most tempting item in state budgets).

The “new approach to mental illness” that President John F. Kennedy called for in a 1963 speech, which resulted in his signing into law the Community Mental Health Centers Act later that year, was a response to the great disruption caused by the rapid closure of the huge state hospitals. Community services were meant to provide a better life for people with mental illness at less cost to the states.

My first job working in a community mental health center in 1973 in New York City was thrilling. Patients who had languished for decades in state hospitals were able to enjoy much more normal lives with the benefits of medication and inclusion in the community. The U.S. became the world leader in community psychiatry and I was proud to be a psychiatrist.

That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.

And the money saved by closing the expensive state psychiatric hospitals rarely followed patients into their communities to provide badly needed treatment and housing. Community mental services either closed or were privatized, and the newly private services routinely refused care to people with severe mental illness because they were usually uninsured and always very expensive to treat.

Eventually, deinstitutionalization turned into reinstitutionalization as prisons replaced hospitals as the biggest line item in state budgets. Under Reagan, the U.S. quickly went from having the best system of community psychiatric care in the world to the worst, and things have further deteriorated ever since.

It is not clear how much of Biden’s extensive physical and human infrastructure rebuilding plan will eventually be enacted into law. But it is crystal clear that rebuilding our country’s shamefully lacking mental health system is not part of the plan.

It is also clear why. Powerful lobbying forces in Washington are fiercely jostling to capture the money allocated to the infrastructure program. Whatever emerges will reflect how much political and economic muscle each industry can exert on the politicians doing the horse trading. In this battle of the titans, people with mental illness are voiceless and their advocacy groups lack political and economic muscle.

The care of people with severe mental illness is necessarily a public responsibility that has been neglected in our primarily for-profit private health care system. The United States has shirked this public responsibility more than any other developed nation on earth. The Biden plan is a sad lost opportunity to play catch-up on desperately needed mental health services and its exclusion of mental health means there is no hope in sight.

Mahatma Gandhi once said that a nation’s greatness is judged by how it treats its weakest members. By this standard, the United States is morally bankrupt and the very opposite of great.

Allen Frances is a psychiatrist, professor and chair emeritus of the Duke University Department of Psychiatry, and was chair of the DSM-IV Task Force from 1987 to 1994.

Photo by Geesling Photography

We have an underclass in Arizona  – our chronically mentally ill, most of whom suffer from schizophrenia.  Society treats this sliver of people with serious mental illness just as cruelly and inhumanely as the lepers of antiquity or the untouchables of India. Many of these persons have no shelter, no bed, no toilet, no shower or bathtub, no running water, no electricity, and no reliable access to food, clean water, or medical care unless they are in jail.

Our public mental health care system is organized for and provides exemplary care for the 90% of Seriously Mentally Ill (“SMI”) persons who have insight into their illness and are mostly compliant with treatment.  But, some SMI persons are chronic, i.e., they are so ill they believe the voices in their heads and their delusions are real, they suffer anosognosia (inability to recognize one’s clinically evident mental illness). They are mostly non-compliant with treatment.  So, they recycle, repeatedly, through treatment programs, emergency rooms, hospitals, the streets, and jails in a hellish existence. Their physical and mental health deteriorates as their families abandon them or become exhausted, struggling to get care for them, and are blocked at every turn.

This underclass results from myths about mental illness, which permeate much of our public mental health care system and block chronically mentally persons from desperately needed care.  As the father of a chronically mentally ill adult, I personally have been told each of the comments paraphrased in quotes below:

  1. Recovery myth: “All persons with SMI can recover and lead a normal life.” In reality, chronic mental illness is more like diabetes and can be managed but rarely, if ever, cured.
  2. Compliance myth: “All persons with SMI can ‘recover’ by complying with treatment in short-term residential programs, community living programs or independent living with ‘wrap-around’ services, combined, as needed, with assertive community treatment (‘ACT’) and occasional involuntary treatment (i.e., injections and short-term hospitalizations), regardless of the severity of their illness.” “He fails to recover because he chooses not to comply with our treatment protocols and rules, so he cannot continue in our treatment program.”  The most severely ill are denied treatment because of the severity of their illness.
  3. Acuity myth: “SMI does not impair her ability to make good decisions and is no excuse for her inappropriate behavior.” In reality, schizophrenia is a physiological impairment of the brain which does affect judgment and behavior.
  4. Fairness myth: “All adults with SMI should be allowed to make their own medical decisions, to refuse treatment, to choose homelessness and never should be subjected to long-term involuntary care, regardless of the severity of their illness.” “Removing such liberty is unfair discrimination against the mentally ill.”
  5. Substance use myth: “It’s just illicit drugs.” ”We cannot treat his mental illness until he overcomes his substance use problem.”  In reality, 75% of SMI persons who are chronically afflicted self-medicate with illicit substances for temporary relief from painful symptoms at some point in their life, which exacerbates their illness.

These myths coalesce into an unconscious, sometimes deliberate, and often-denied culture of blocking chronically-afflicted persons from care because “he won’t comply”; “he uses drugs”; or, “he’s an adult and makes his own choices.”  In reality, she thinks the voices and delusions are real, and hence she cannot participate consistently in the treatment offered to the other 90% of SMI persons who have insight.  She needs a caring system free of these myths, more flexible, more attuned to her individual needs, and more accountable to the public.  And, she might even need long-term involuntary treatment, opponents of which sincerely believe and use these myths to block expansion of such treatment, unwittingly keeping this underclass in our streets and jails.

Dick Dunseath, father of a chronically mentally ill adult son  /  Carefree, Arizona

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Who Are We Treating (And Not Treating) And Why?

By Dr. Michael Franczak of Copa Healthcare on Population Health trends in Maricopa County. He brings decades of experience into the conversation.

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People with SMI on the streetsImage by Geesling photography -SMI people on the streets of Phoenix

Linda Mimms initially shared this article via social media. This article is a brilliant take by Dr. Rob Laitman on what it costs our society monetarily and, more importantly, our humanity. Failure to appropriately treat people with mental illness disorders is caused by not meeting people’s treatable medical brain disorders, in addition to multiple other factors. We have been violating the CIVIL RIGHTS of this neglected group of sick citizens who have needed treatment for decades with disastrous results. The family and community burden is one of these many disastrous outcomes. These members’ lives with serious mental illnesses are often 25 years shorter than the rest of the population. Jails and prisons are treating (though inadequately) our sickest society’s members using our criminal system as an alternative to a therapeutic environment.  They have become a de facto significant psychiatric provider in this punitive setting. We continue to treat the behaviors of mental illness as criminal acts.

Charles Goldstein, MD

  “The more I look into the horror of our healthcare system, the more outraged I become. Let me give you some perspective as a nephrologist (kidney specialist). End-Stage Renal Disease (ESRD) is the only medical diagnosis that automatically qualifies you for Medicare. Currently, there are 468,000 ESRD patients in the USA. The average expenditure per patient per year is $150,000. The total cost is 70 billion dollars. Employment in ESRD patients is 20% employed to age 55 and less than 3 % thereafter. Now let us look at the psychotic spectrum disorders representing 2% of the population (1 % schizophrenia spectrum and 1 % bipolar with psychosis). This percentage represents 6,620,000 individuals. If we were to support their medical needs fairly and comparably, we would be willing to devote 1 trillion dollars just for their care.

   So what do we spend? When it comes to direct patient care for schizophrenia, the most recent estimate from a 2016 study was 37.4 billion. If you were to assume that the cost of taking care of someone with bipolar with psychosis was similar (actually, we know it is substantially less), the cost would be about 75 billion. Essentially we are only spending less than 1/10 for our patients with psychosis medical care than we have already decided would be appropriate in the ESRD population.

   What is even more outrageous is this lack of support leads to tremendous non-direct healthcare costs, including law enforcement, homeless shelters, and productivity losses of both the patients and the caregivers. Specifically, for schizophrenia, unemployment cost was 59.2 billion, and caregiving was 52.9 billion.

   What drives this tremendous disparity in resource allocation starts with the nihilistic belief that psychotic spectrum disorders are not treatable. Why should we devote resources to a hopeless population? Another component is that 50 % of this population has anosognosia, and therefore does not feel that they need treatment. Given the current status of the laws that “protect” patient’s rights, such as HIPAA and the underutilized and underpowered AOT laws, it is impossible to engage the patient even to start an effective treatment. Where we are right now is less than 50% of all patients with psychosis receive any care. The biggest psychiatric providers are the LA jail, Cook County jail, and Rikers Island jail. It is estimated that 20-40% of the prison population has a psychotic illness. The ever-growing homeless population also has been found to have a similar % of serious mental illness. At present, in those receiving treatment, only 14 % are in meaningful recovery.

   The question is, what are we doing wrong, or is this just a hopeless population? What does the evidence say? As it turns out, there is increasing evidence that early identification of prodromal high-risk individuals can be identified, and by working on their processing speed (REM) the development of the full-fledged psychotic disorder can be aborted. Even after the development of psychosis, early treatment with the most effective treatment and wrap-around social services can change the trajectory of the illness. This is being demonstrated impressively with the Recovery After Initial Schizophrenia Episode (RAISE) study.  Remarkably,  the VA has shown that if patients are switched to clozapine, there is a savings of over $ 20,000 accrue per patient-year initially, and as monitoring becomes less, that saving grows. Switching to clozapine has also led to the best survival, the lowest hospitalization rate, and the best quality of life.  In my hands, I have demonstrated what is possible with optimal clozapine care. 75/103 of my patients treated over six months are in meaningful recovery. I define meaningful recovery as being in school, work, or a PROS program training to work. Hospitalization and, therefore, the cost of care has been minimized. In over 330 patient-years of care, there have been only 1.3 years of hospitalization. This translates out on average 1-2 days/year in the hospital. Medical compliance has been over 90% in those that have been successfully engaged, and overall over 98% of the population considers themselves improved with my care.

   So we need to let our legislators know that they are not throwing good money after bad money. We need to have the resources to change the barriers to care. Specifically, we need a national uniform rational AOT program that gives the provider the ability to treat the patient where the need is demonstrated. Serious mental illness is a team sport, and communication has to be seamless, so we need to reform HIPAA to assure that caregivers are involved in every step of the way. We need to invest in improving access. Taking care of these patients takes a lot of work, and the reimbursement is dismal for the provider. So I return to the ESRD program. For every dialysis patient, the provider is paid a fixed amount for dialysis management. Clozapine is a lot of work and is superior to all other antipsychotics in every setting, and yet only 2% of the population is so treated. We need to invest in these patients and provide a treatment stipend for management. A reasonable fee schedule would be initially $1000/mo for the first six months, $750/mo for the next six months, and then $500/mo after one year. If the patient is hospitalized, the amount should be reduced proportionally to the time spent in the hospital. This is how the ESRD program works, and this carrot has led to superior clinical care. In our population, this small carrot could be a game-changer not only in the quality of care but the end of being a tremendous cost saver. With the cost-saving, we would then be able to devote more resources to all of the appropriate supports.

   In summary, we need to convince the powers that be to devote appropriate resources. We need bravery to insist on rational laws that help engage our patients and families in therapeutic relationships. Our medical professionals need to be re-educated in what is possible and learn the correct approach to treatment. We need to pay adequately for this arduous but rewarding work. If we do this, we will be able to provide an optimal clozapine based regimen with full wrap-around psycho-social services. With this, we will not only end suffering, but we will see a majority of this population lead lives of purpose and meaning.” Robert S. Laitman, MD

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Forward by Dr. Charles Goldstein

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

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

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

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

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

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

By Elizabeth Hancq

Prevelance Rates by Cost Group Chart

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

By Elizabeth Hancq

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

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

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

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

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

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

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

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

References: 

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

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