Ignoring mental health infrastructure will be a costly mistake
Blog July 13, 2021 0

Ignoring mental health infrastructure will be a costly mistake

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
Image by Adobe

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.

A preventable tragedy, act now to improve the system!
Blog May 19, 2021 0

A preventable tragedy, act now to improve the system!

Photo from April 13, 2021, 12 news https://kvoa.com/news/top-stories

The recent murder of one mentally ill patient by another mentally patient in a Gilbert, Arizona Behavioral Health Residential Facility brings into sharp focus the importance of careful placement and diligent supervision of individuals living with chronic mental illness. Of course, the complete facts surrounding the tragic death of 49-year-old Steven Howells, apparently at the hands of Christopher Lambeth, are not yet known. What is known is that Lambeth “stepped down” to a facility with only hours of staffing daily, and the alleged murder occurred when no staff was present.

A critical unknown known fact is whether Lambeth was medication and treatment adherent. Also, whether his behaviors began deteriorating in the prior days or weeks without an intervention by his treatment team or whether this deterioration (if any happened) was even noticed by staff during the mere 8-hours daily they were present in the home (assuming staff was, indeed, present). The critical known fact is that Arizona’s Psychiatric Security Board did not hear from a psychiatrist or psychologist and acted without a Risk Assessment, a formal report on the risk of violence by someone in a new environment, for example, a residence with minimal staffing.

Thankfully, Senator Nancy Barto is trying to make the community safer for all patients with her PSRB reform bill.

The profound tragedy of the Tilda Manor murder is that it is two-fold:

  1. One patient is dead, and the accused patient faces horrific criminal charges.
  2. The behavioral health system failed each of these men.

 

SB1030 — The PSRB Bill. With agreed-upon floor amendments, this bill will not have a budget impact. It reforms the Psychiatric Security Review Board and will have a significant impact on Public Safety. You can read more about this important work in a recent Op-Ed published in the Arizona Capitol Times.

Please take a moment to email or call your State Representatives and senators and ask them to support this bill! Every email or phone call matters and makes a huge difference!! Thank You!

Here is a link to find your AZ Representative’s and Senator’s email. You can also quickly email all House and Senate members through this site:

The Arizona Peoples Lobbyist – Your Voice – Your Choice (azpeopleslobbyist.com)

Holly Gieszl

ACMI founding board member

Tragedy strengthens effort to eliminate board

By: Kyra Haas Arizona Capitol Times May 14, 2021

https://azcapitoltimes.com/news/2021/05/14/tragedy-strengthens-effort-to-eliminate-board/

Sen. Nancy Barto is spearheading an effort to abolish the state board that decides whether those who commit serious crimes but were found guilty except insane are fit to return to the community.

The effort gained urgency after a man allegedly beat another resident of his Gilbert group home to death last month – 15 years after he killed his own grandparents and less than a year after the Arizona Psychiatric Security Review Board decided after a brief hearing that he needed less supervision.

Legislative efforts to reform the board fell short last year, but have picked up steam this session. SB1029 looks to reform the board, and SB1030 would sunset it and move the board’s duties back to the courts in 2023.

Barto, R-Phoenix, said the two bills – which are waiting for a floor vote in the House – are being rolled into one. SB1030 will have the reforms outlined in SB1029 while still dissolving the board in a couple years.

Barto said she’d been hearing concerns about the board for years. When she attended a board meeting to see for herself how it operated, she described it as “haphazard” and unusual.

“It’s hard to overestimate how lack of rules, really has potentially and actually harmed the public in this instance; we need to rectify it,” she said.

Christopher Lambeth, 37, last appeared in front of the board in August 2020. Previously committed to the Arizona State Hospital after being found guilty except insane in his grandparents’ murder, Lambeth had been living in a transitional facility in Tucson. At the August hearing, which lasted 20 minutes, his request to move to the Phoenix area was unanimously approved and he was placed in a home with only eight hours of supervision a day.

Advocates say the subsequent tragedy was preventable, but predictable, and that it speaks to a litany of problems with the board and how it’s run. They say the board handles cases inconsistently, provides inadequate time for clients and attorneys to prepare for hearings and has insufficient written guidelines and procedures.

Holly Gieszl, a founding member of the Association for the Chronically Mentally Ill, said Lambeth’s case was a prime example of the board’s dysfunction. Gieszl often attends board meetings to represent her own clients, and she remembers Lambeth’s August hearing setting off alarm bells at the time.

“Chris comes in, they don’t have a risk assessment; they don’t hear from a physician or psychologist, and they let him go to an eight-hour house,” Gieszl said. “Seven months later, he murdered someone.”

Board members are appointed by the governor. The board is headed by a retired psychiatrist and has a psychiatrist, psychologist, parole officer and a public member. The board is responsible for deciding whether those who committed serious crimes but were found guilty except insane are fit to be discharged from the state hospital. It is also tasked with monitoring the progress of those on conditional release from the hospital. The board deals with roughly 100 cases a year.

Some of the issues flagged by Gieszl and others were also noted in a 2018 auditor general report. The report stated that the board needed to develop rules and policies to guide its work, issue orders and notices as statutorily required and make sure it was getting consistent information on the patients’ mental health before making decisions.

It also stated that some mental health reports were much more detailed than others, with some offering only “general conclusion statements with little or no support.”

“The lack of sufficient information jeopardizes the Board’s ability to make timely and consistent decisions regarding GEI (guilty except insane) persons,” the report stated.

While board chairman Dr. James Clark has said that the board completed the recommendations outlined by the audit, advocates disagree and also want more changes.

“What the PSRB has not changed at all is the way that it has gone about assessing risk before it releases somebody,” Gieszl said, adding that her organization is backing the legislation to address those inadequacies.

Among the changes proposed in the legislation are placing a retired judge as the chair of the board, giving a 45-day notice to patients before hearings and having the board explain its decisions on each patient. After the board sunsets in 2023, the cases would be transferred to the Superior Court where the person was sentenced as guilty except insane.

Barto said that in stakeholder meetings, board members were resistant to any sort of change.

“I think they just really think that the status quo is working,” Barto said. “When you look at what just happened, unfortunately, we’ve known this is coming, something like the tragedy that happened with Mr. Lambeth and who he killed. It’s unfortunate that we have such a prime example of the board’s inability to make a better determination of this man’s future.”

Clark declined an interview, instead referring to his presentations to the Senate Judiciary Committee and House Criminal Justice Reform Committee. He declined to comment on whether the board handled Lambeth’s case appropriately.

“(D)oing away with the PSRB and having Superior Courts assume jurisdiction and monitoring/oversight/supervision of individuals adjudicated Guilty Except Insane, as SB1030 proposes, would be a major policy change, a step backwards and would add an extra burden on the Superior Courts that is unnecessary,” Clark said in his written statement.

Are people with serious mental illness more violent?
Blog May 16, 2021 0

Are people with serious mental illness more violent?

violence
Photo by Charl Folscher on Unsplash

Photo by Charl Folscher on Unsplash

As Tim Murphy points out, while most people with serious mental illness are not violent (but, instead, are more likely to be victimized), there is an association between violence and serious mental illness. People with untreated or undertreated psychosis can be dangerous. Families and friends need to understand the risk. Risk assessments, appropriately done by experts, would help recognize and mitigate potential bad outcomes to societies when people with SMI are re-introduced to communal living. More attention needs to focus on serious mental illness, the causes, the treatment, and optimal disease management. Serious mental illness should be managed in the same manner as cardiovascular disease or diabetes, understanding that this is likely a lifelong condition that waxes and wanes in severity and must be managed continually. We need to recognize mental illness as a disease and not a character flaw.

Charles Goldstein, M.D.

 

Serious Mental Illnesses Are More Deadly Than Covid, Tim Murphy Argues. So Why Aren’t We Doing More?

by Pete Earley

 

Image by mohamed Hassan from Pixabay

This was published on Pete Earley’s blog on 5/14/21 

(5-14-21) Former Rep. Tim Murphy (R.-Pa.) wrote and pushed the most significant federal mental health legislation in decades through Congress during the final days of the Obama Administration. In this OP Ed first published in the Pittsburgh Post Gazette, he argues that serious mental illnesses are claiming more lives than COVID and calls for reforms, many of which, were stripped from his original bill.  As with all guest blogs, the views expressed are the author’s. I welcome comments on my Facebook page.

Addressing the link between violence, serious mental illness

By Tim Murphy, writing in the Pittsburgh Post Gazette

Mass murders have already exceeded several dozen in 2021. The act is so abhorrent to us that we continually seek explanations in hope of finding a cause and cure.

Some blame the weapon (primarily firearms) and some the characteristics of the perpetrator such as the presence of serious mental illness (SMI), including schizophrenia and bipolar disorder. Global studies of mass violence report that perpetrator SMI is present in less than 10% of the cases, leading some advocates to suggest preventive efforts be directed away from mental illness.

Such action defies logic, facts and science.

Although SMI compromises only 5.2% of the population, the impact of their illness is far greater. According to the Treatment Advocacy Center, most with SMI are not violent; however, those with untreated SMI have 15-fold-higher rates of violence.

 

Nearly 30% of family homicides involve someone with a SMI

SMI is present in about 10% of all law enforcement responses and 20% of the prison population (where most do not receive proper treatment and are twice as likely to be victims of inmate violence). Those with SMI are 11 times more likely to be the victims of crime, are almost half of the victims in fatal police encounters, and the untreated SMI are 16 times more likely to die in a police encounter.

Perpetrator SMI is reported in 29% of family homicides and 20% of law enforcement officer fatalities. Half of those with SMI attempt suicide, and 75% have at least one chronic illness such as cardiovascular disease or diabetes contributing to their 10–15-year shorter lifespan.

Dr. Tom Insel, former head of the National Institute of Mental Health, estimated SMI has an annual death toll of a few hundred thousand lives in the U.S. and 8 million lives globally. By comparison, 3.2 million total deaths worldwide have been attributed to COVID-19 to date. Yet, for COVID, we shut down the planet.

SMI Kills More Than COVID – Why Are We Failing?

So where and why are we failing people living with SMI? Simply put, we still make it very difficult to get proper care.

Many with SMI do not seek care because of a common symptom called “anosognosia,” whereby the illness itself causes the person to be unable to understand they have an illness, and therefore will not voluntarily seek help. They are unable to recognize their hallucinations and delusions are not real, and like other deteriorating brain diseases such as Alzheimer’s, they are even unaware they are unaware they are ill.

As with dementia they can become paranoid, distrustful, combative and resist treatment. However, unlike SMI, coordinated treatment and care is widely available for dementia. Tragically, federal and state policies create insurmountable barriers to care for the SMI, even for those who voluntarily seek treatment.

Key Provisions Of His Bill Were Dropped

When Congress passed my Helping Families in Mental Health Crisis Act in 2016, several major reforms were created to better treat mental illness. However, key provisions were left out, mostly for budgetary reasons. Passage of them now would provide major tools for prevention of more tragedies.

• Increase Psychiatric Bed Capacity. There are 10 times more people with SMI in jails than in psychiatric hospitals. An antiquated regulation known as the Institute for Mental Diseases (IMD) Exclusion was designed to close overcrowded psychiatric hospitals like Mayview and Dixmont by barring federal Medicaid funds in psychiatric facilities with more than 16 beds. In 2016, a new federal IMD rule loosened restrictions but still limits psychiatric inpatient hospital care to 15 days per month. This is a ludicrous policy and anti-science since it is based on budgetary and not medical standards of care. Just medication stabilization alone often requires more time.

• More providers. Early symptoms of SMI appear by age 14 in half the cases and in three-fourths by age 24. Early treatment makes a huge difference in prognosis. However, most counties have no child/​adolescent psychiatrists, psychiatrists, psychologists or psychiatric nurse practitioners and even among those who do, most do not specialize in treating SMI. Low insurance reimbursement rates and high provider burnout causes many to leave these careers early. Medical and graduate school scholarships and loan forgiveness should be granted to any doctoral level psychiatric provider specializing in the care of SMI.

• Stop treating SMI as a crime. Many state courts order treatment or allow access to state-funded care only if the person commits a crime. A better alternative is Assisted Outpatient Treatment (AOT) based on a standard that recognizes “psychiatric deterioration” before “dangerousness to self/​others” or “grave disability” as criteria for those who need treatment.

In AOT, a court orders a person to remain in outpatient treatment with medication, social services and supportive housing. AOT reduces crime, arrests, homelessness, incarceration and improves adherence to treatment often by over 70%. Fund and promote AOT.

• Train police. Crisis intervention training is effective to de-escalate a potentially volatile situation, saving the lives of citizens and police. Require it. Fund it.

• Let families help. Current confidentiality laws are supposed to serve the patient’s best interest; however, they create barriers when doctors are blocked from important communication with families regarding history of treatment, medication, violence and ability for self-care. Informed decisions about treatment should permit compassionate communication between providers and families under defined circumstances. Reform the Health Insurance Portability and Accountability Act privacy rule.

• Increase SMI research. NIMH decreased research on bipolar disorder by 25% and on schizophrenia by 17.5% between 2016 and 2019 and cut research trials for medication by 90% between 2003 and 2019.

• It costs less to care. A report to be released in a few weeks from Schizophrenia and Psychosis Action Alliance (on which I serve as a board member) will detail that the total costs of our misguided approach to schizophrenia and bipolar disease in the U.S. is several hundred billion dollars per year. The annual per person costs for schizophrenia alone exceed $100,000 per year. Treatment is one-sixth the cost of incarceration, and greatly reduces the risk for violence.

There is plenty of research indicating effective treatment can greatly reduce the risk for violence among those with SMI. Common decency, compassion and economics all underscore the value of changing our approach. We risk repeating the same tragic course if we again fail to act properly. And if we fail, the fault lies not in our guns, but in ourselves. Now that is a mass tragedy.

ABOUT THE AUTHOR: Tim Murphy is a psychologist and a former Pennsylvania state senator and U.S. congressman from Western Pennsylvania. He works as a psychologist in the Pittsburgh area, especially with veterans struggling with PTSD.

Time To ACT- Help Our Most Vulnerable Population With Legislative Change!
Blog May 4, 2021 0

Time To ACT- Help Our Most Vulnerable Population With Legislative Change!

Photo by Ian Schneider Unsplash

ACMI Action Alert: Arizona’s 2021 Budget, Please Include These Items for SMI

SB1142 a modest (up to $1 million) tax incentive bill for employers who hire one of Arizona’s 40,000 individuals diagnosed as Seriously Mentally Ill. It serves 2 purposes: offset initial training costs and gives purpose and meaning to individuals ready to take the next step towards recovery and independence.

SB1786 a prisoner transition program designed specifically for individuals with the most serious mental diseases. Transition programs work for those with a serious mental illness and who are most at risk for harming themselves or others without effective transitioning (cost $1.3 million).

On their own, these bills do not solve every gap in Arizona’s continuum of care for individuals with chronic mental illness. However, they are vital parts of that continuum and important steps forward. People with serious mental illness can find support transitioning out of prison and others can find meaning and purpose through employment and inclusion in the community.

SB1030 — The PSRB Bill. With agreed upon floor amendments, this bill will not have a budget impact. It reforms the Psychiatric Security Review Board and will have a significant impact on Public Safety. You can read more about this important work in a recent Op-Ed published in the Arizona Capitol Times.

SB1716.  The Arizona State Hospital (ASH) Bill.  The Bill does not have an impact on the budget this year as well.  We are confident that this is the beginning of reforming the bottleneck that leaves so many in Maricopa County languishing in inappropriate hospital settings or worse. This legislation also seeks to bring more accountability to ASH for the services it provides and improve patient safety.

But we need YOUR help NOW!

Please take a moment to email or call your State Representatives and Senator and ask them to support the two budget items! Every email or phone call matters and makes a huge difference!! Thank You!

Here is a link to find your AZ Representative’s and Senator’s email. You can also quickly email all House and Senate members through this site:

The Arizona Peoples Lobbyist – Your Voice – Your Choice (azpeopleslobbyist.com)

UPDATE:

SCR1018 —  The Concurrent Resolution. This expresses support for community-based efforts to provide clinically appropriate care to individuals with chronic serious mental illness; Passed unanimously in both the Senate and House!  Please take some time to read this Resolution and thank our legislators on social media and through emails.

This Resolution acknowledges the needs of individuals and families living with chronic serious mental illness in Arizona and our legislators unanimously agreed that we must work toward providing a full continuum of care, including access to the Arizona State Hospital, for this group of people.

SENATOR BARTO — We continue to be grateful for Senator Nancy Barto’s tireless work on addressing these gaps in the continuum of care on behalf of the Chronically Mentally Ill in Arizona down at our State Capitol every week! Please express your appreciation when you have a moment as well to other legislators who support these important bills.

SB1716 Arizona State Hospital Bill Passes the AZ House Health & Human Services
Blog March 23, 2021 0

SB1716 Arizona State Hospital Bill Passes the AZ House Health & Human Services

YOU did it!

SB1716, the Arizona State Hospital bill, passed the Arizona House Health & Human Services

Committee yesterday 7-1! Thank you to everyone who signed in to azleg.gov to support this bill and called or emailed the Committee members and Governor’s office. You made a huge difference in the lives of individuals with chronic mental illness!

We still have our work cut out for us. SB1716 will soon go to the AZ House of Representatives for a vote. Please take some time to email and call your two state Representatives and the Governor and urge them to support this important legislation.

Find out who your lobbyist is and get their email here:

The Arizona Peoples Lobbyist – Your Voice – Your Choice (azpeopleslobbyist.com)

To recap what this bill hopes to accomplish; ASH will no longer be able to limit the number of patients who can be admitted based on the county where the patient lives. Currently, only 55 patients from Maricopa County can be at ASH. — even when there are empty beds:

  • ASH offers the highest level of psychiatric care.  Admission should be based on clinical needs, like dangerousness to self and others and beds used for the sickest psychiatric patients statewide.
  • Nobody should be excluded from treatment because of their zip code.

Reforms the existing ASH Governing Body (Governing Body) to operate without conflicts of interest:

  • The majority of members will NO LONGER be employees of the Department of Health Services, which oversees ASH.
  • Requires that the Chair of the Independent Oversight Committee (IOC) be invited to Board meetings and provide quarterly reports about human rights violations with patients.
  • Improves transparency — requires Governing Body file annual reports with the Legislature that describe the treatment provides and what is working.

Patient safety improvement:

  • ASH has an outmoded video surveillance system that puts patient safety at risk. Need a better surveillance system.  The bill requires ASH to maintain a surveillance system with video and audio and appropriates $500,000 to do so. ASH administration has requested a new system last year and is currently in a Request for Proposal.

A better run State Hospital protects public safety and health by getting treatment for our most mentally ill patients ad holding the hospital accountable.

Sample of suggested email and/or talking points for a phone call. Please tailor your own message using one or more of the following sentences:

Dear Representative _______,

I ask that you support SB 1716. We need to improve our State Hospital and protect the public.

All 116 civil beds available there should be open to the sickest people in Arizona.

We need better accountability at the hospital because of the dangerousness of the people treated there.

Respectfully,

You can call the Governor’s office at 1-602-542-4331 or email engage@az.gov

 

We realize that everyone’s life is full, if you are unable to call or email but still want to help the chronically mentally ill, you can partner with us financially. ACMI is a group of dedicated volunteers, no one receives a salary. Your gift will go directly toward improving the well-being of people living with chronic mental illness.

Thank you,

ACMI Board

The Cost of not Caring
Blog December 13, 2020 0

The Cost of not Caring

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

ACMI Board

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Let us Talk About Treatment for People with Psychiatric Illness
Blog September 7, 2020 0

Let us Talk About Treatment for People with Psychiatric Illness

Photo by Michael Jin & Photo by Camilo Jimenez on Unsplash

Recently, when we were still permitted to congregate socially, I was at a Friday night service in my synagogue when a young woman in the back row emitted a frightening scream, fell, and began convulsing. During her seizure, she hurt herself by falling and hitting her head (danger to self) and broke a chair nearby when she fell on it (property damage). Of course, paramedics were called who attended to her and eventually transported her to a hospital, whereupon I lost contact with this particular young woman and her continued treatment. At no point were the police involved with this manifestation of symptoms of an otherwise presumably well-controlled person with epilepsy. Being an emergency physician myself, I can only tell you that my experience with people with seizure disorders being brought to the emergency room is that they are never subsequently taken to jail.  The options are either hospitalization or, more frequently, discharged home on appropriate medications with appropriate follow up.

 

In another hypothetical scenario, a “brittle diabetic,” usually well-controlled on his insulin, passes out while driving and knocks over a Postal box when he runs into it with his car (a federal crime!).  Police and paramedics show up; the patient is taken to an emergency room where it is ascertained that he indeed has diabetes and had become hypoglycemic. The patient is either admitted to the hospital or sent home on appropriate medications with appropriate follow-up.

 

In neither of these cases detailed above, were the patients assumed to be criminals.  People exhibiting symptoms from a chronic disease are treated appropriately for their symptoms. Their underlying illness and hospitalization, if needed, are not a problem; there are plenty of inpatient beds for them.

 

Let’s contrast this with what might have happened if this was a person with serious mental illness attending the same Sabbath service and became symptomatic, started flailing around, and did some property damage as this woman did. Police and/or paramedics would have been called. The patient may or may not have been taken to an emergency room and may or may not have gone to jail because society draws a fine line (not so fine) between apparent “medical” conditions and “psychiatric” conditions. Unfortunately, in a behavioral health crisis, when people become symptomatic because of their underlying disease, the behaviors related to their disease can suddenly be considered a crime. Also, if it was adjudged that this patient needed further treatment on an inpatient basis, they would have found this to be nearly impossible as there is an extremely limited number of inpatient psychiatric beds in the state of Arizona.

 

Currently, experts recommend approximately one psychiatric inpatient bed for every 250,000 people. In Maricopa County alone, there are about 4 1/2 million people; this equates to an inpatient psychiatric capacity that should exist of around 1,800 inpatient beds. At present, in Maricopa County, there are just 55 beds available in the public system for long-term psychiatric treatment. The inadequate number of limited long-term inpatient psychiatric beds is a figure so egregiously deficient that the reader might well be shocked that this is the truth; shamefully, it is.

 

We need to correct this appalling lack of inpatient psychiatric therapy currently available for the Seriously Mentally Ill.

Charles Goldstein, MD

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DJ Jaffe – 52 Weeks of Truth Telling by DJ Jaffe
Blog August 31, 2020 0

DJ Jaffe – 52 Weeks of Truth Telling by DJ Jaffe

 

Photo courtesy of Isaac Geesling Photography 2018

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

 

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

 

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

Photo courtesy of Isaac Geesling Photography 2018

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

I am not a mental health advocate.   

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

DJ Jaffe

NAMI/NYS convention 2012

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

Holly R. Gieszl, JD

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

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