Worth reading: Attorneys, and ACMI Board members, Josh Mozell and Holly Gieszl wrote an in-depth piece about Arizona’s mental illness treatment system in this award-winning magazine. They focus on the 55 bed limit for Maricopa County at the Arizona State Hospital (ASH). They discuss the community treatment and the true interpretation of Olmstead. *Begins page 40. #mentalhealth#mentalillness#Arizona
On page 80 is an interview with the infamous Chic Arnold. Well done!
Most folks reading our blog know the long disturbing history of how we have gotten to such a sad place in the US in our treatment of people with serious mental illnesses. You may find it interesting, as I did, to learn that President Reagan made a major change (see below), which resulted in diminished community resources.
“That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.”
We need a federal plan that also involves the removal of the IMD exclusion. This mental health treatment exclusion is a parity violation. There is no such restriction on the length of stay or the number of medical beds in hospitals for medical conditions. Learn more about parity laws.
We need to focus on the people with SMI and not just general mental health!!
Original article published by StatNews on July 9th by Allen Frances
President Biden’s ambitious infrastructure plan has a glaring omission: It makes no effort to redress the awful reality that the United States has the worst mental health infrastructure of any country in the developed world.
People with mental illness, their families, and society at large are suffering the tragic consequences of four decades of mental health defunding and privatization: 90% of psychiatric beds have been closed; the once-wonderful system of publicly funded community mental health centers has been gutted; crisis response teams are almost nonexistent; and the available pool of affordable housing meets only a fraction of what’s needed.
In the Middle Ages, people with severe mental illness were often chained in prisons, begged on the street, or languished in poor houses. In modern America, 350,000 people with mental illness are in jails or prisons (often for nuisance crimes that could easily have been avoided had treatment been available); 250,000 of them are homeless; and the average life span of those with severe mental illness is 20 years less than that of the general population. The rate of dying from Covid-19 was three time higher among people with schizophrenia than in the general community — the second biggest risk factor after age.
Law enforcement officers, sheriffs, and judges have become the most vocal critics of the brutal criminalization of mental illness and are now among the strongest advocates for improved community treatment and housing. Forcing scared and untrained police officers to be first responders for people with untreated mental illness puts them in untenable positions and is partly responsible for police brutality and shootings. People with untreated mental illness are 16 times more likely to die during a police encounter than other civilians.
And once in jail, people with mental health issues are difficult to manage, deteriorate further, spend disproportionate time in solitary confinement, and have prolonged stays (especially since they have no place to go and no treatment if released).
How did the U.S. get into this mess? Massive and rapid deinstitutionalization of people with mental health issues began in the late 1950s for several reasons: partly because effective antipsychotics had been discovered; partly as a humanitarian response to the horrors of the overcrowded “snake pit” state psychiatric hospitals; partly as a cost-cutting method (since mental health was often the biggest and most tempting item in state budgets).
The “new approach to mental illness” that President John F. Kennedy called for in a 1963 speech, which resulted in his signing into law the Community Mental Health Centers Act later that year, was a response to the great disruption caused by the rapid closure of the huge state hospitals. Community services were meant to provide a better life for people with mental illness at less cost to the states.
My first job working in a community mental health center in 1973 in New York City was thrilling. Patients who had languished for decades in state hospitals were able to enjoy much more normal lives with the benefits of medication and inclusion in the community. The U.S. became the world leader in community psychiatry and I was proud to be a psychiatrist.
That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.
And the money saved by closing the expensive state psychiatric hospitals rarely followed patients into their communities to provide badly needed treatment and housing. Community mental services either closed or were privatized, and the newly private services routinely refused care to people with severe mental illness because they were usually uninsured and always very expensive to treat.
Eventually, deinstitutionalization turned into reinstitutionalization as prisons replaced hospitals as the biggest line item in state budgets. Under Reagan, the U.S. quickly went from having the best system of community psychiatric care in the world to the worst, and things have further deteriorated ever since.
It is not clear how much of Biden’s extensive physical and human infrastructure rebuilding plan will eventually be enacted into law. But it is crystal clear that rebuilding our country’s shamefully lacking mental health system is not part of the plan.
It is also clear why. Powerful lobbying forces in Washington are fiercely jostling to capture the money allocated to the infrastructure program. Whatever emerges will reflect how much political and economic muscle each industry can exert on the politicians doing the horse trading. In this battle of the titans, people with mental illness are voiceless and their advocacy groups lack political and economic muscle.
The care of people with severe mental illness is necessarily a public responsibility that has been neglected in our primarily for-profit private health care system. The United States has shirked this public responsibility more than any other developed nation on earth. The Biden plan is a sad lost opportunity to play catch-up on desperately needed mental health services and its exclusion of mental health means there is no hope in sight.
Mahatma Gandhi once said that a nation’s greatness is judged by how it treats its weakest members. By this standard, the United States is morally bankrupt and the very opposite of great.
Allen Frances is a psychiatrist, professor and chair emeritus of the Duke University Department of Psychiatry, and was chair of the DSM-IV Task Force from 1987 to 1994.
This study examines how housing and in-home supports affect public spending on individuals with chronic mental illness in Maricopa County, Arizona.
It does so through a comparative analysis of average costs per person per year across three housing settings: permanent supportive housing, housing with unknown in-home support, and chronic homelessness.
Specifically, it analyzes costs for housing, health care, and criminal justice during the period of 2014-2019. It also features a small-sample (small-N) case study of a housing setting that provides individualized, 24/7 in-home support to individuals with chronic mental illness (CMI) who have high support needs, examining average costs per person before and after moving into that setting (2016-2019).
Finally, the study outlines recommendations from interviews with dozens of experts who work with and care for individuals with CMI in Maricopa County about reducing costs and improving care.
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:
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.
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.
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.
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.”
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
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:
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.
Please join us to learn about the “Mapping the Costs of Serious Mental Illness” which was a two-year study commissioned by ACMI to determine various costs associated with serious mental illness. There will be a presentation followed by a Q & A session.
Studies into the dangerous long-term effects of repeated psychosis should underscore the need for early and continued treatment for persons with psychotic disorders. We do understand that long-acting injectable anti-psychotic medications (LAIs) are expensive; however, one episode of psychosis necessitating an inpatient stay will far exceed the cost of LAI treatment. And, yet, despite this knowledge, insurers insist on step therapy. Let us share our experience with our insurer’s denial for our son’s long-acting injectable medication after he had failed at oral medication for a decade and subsequently been stable on an LAI.
Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are likely to be homeless, unemployed, or living in poverty. Life expectancy for patients with schizophrenia is 25 years below the average lifespan. Furthermore, patients with schizophrenia experience numerous comorbidities; weight gain, increased cardiovascular risk, and mood and cognition deterioration. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to reduced Quality of Life (QOL) and increased economic burden.
Here is an Op-Ed from the Arizona Republic on April 23rd on our experience:
The following bills that seek to enhance the well-being of individuals and families with chronic mental illness in Arizona continue to move forward. Here’s where they stand and how you can help:
SB1059 – Clarifies current law requires that a person with mental illness and substance use diagnosis must be evaluated and not summarily dismissed due to the presence of drugs. The intention is to make treatment consistent.
Status: Passed in the Senate. Passed out of House Committees, currently waiting to go to House floor for a vote. Email all House members.
SB1142 – A tax incentive bill for employers who hire people with serious mental illness. Sets the credit amount at $2 for each hour worked by an SMI employee during the calendar year, not to exceed $20,000, tax-paying business owner. Government agencies excluded.
Status: Passed in the Senate. To be heard in the House Appropriations Committee this Tuesday, 3/30, for a vote.
SB1716 – Currently, only 55 patients from Maricopa County can be at the Arizona State Hospital (ASH) — even when there are empty beds. ASH will no longer limit the number of patients who can be admitted based on the county where the patient lives. Admission should be based on clinical needs.
Reforms the existing ASH Governing Body (Governing Body) to operate without conflicts of interest: Most 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 provided 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. We 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.
Status: Passed in the Senate. To be heard in the House Appropriations Committee this Tuesday, 3/30, for a vote.
SB1029 & SB1030 – Psychiatric security review board (PSRB) bill, SB1029, requires more information and reports for the Board to ensure that it treats patients fairly and protects the public. The Board now operates without enough information on patients when it makes decisions. The bill has a retired judge become the Chair, so the Board operates by fair rules.
Because the PSRB Board opposes any changes and claims that it operates perfectly, SB1030 ends the PSRB and sends the functions that the PSRB performs to the Superior Court in each county. This saves the state money and will ensure that patients get a fair hearing in front of a judge who follows the law.
Status: Passed in the Senate. Passed in the House Committees, waiting to go to the House floor for a vote.
ACMI would like to thank Senator Nancy Barto, the sponsor of these bills, for her tireless and heroic work on behalf of individuals and families living with chronic mental illness in Arizona! When you have an opportunity, please thank her as well.
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.
Please contact your legislators by this Monday morning.
Action Alert: Individuals living with chronic mental illness need your help!
Please take a few minutes to call and email members of the House Health and Human Services committee (contact information below) to urge them in supporting SB1716 that will be heard in an HHS Hearing this coming Monday, 3/22.
SB 1716 is a short, simple bill to help the AZ State Hospital (ASH) provide (a) better care for the sickest mentally ill individuals in Arizona, and (b) more transparency to the public and legislature for how care is provided at the hospital.
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 form 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 need, 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 like a private board and without conflicts of interest:
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.
A better run State Hospital protects public safety and health by getting treatment to our most mentally ill patients ad holding the hospital accountable.
Sample of suggested email and/or talking points for 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 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.
House of Representatives,Health and Human Services Committee members contact information:
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