The jail rethink we really need: Other places have a saner way to handle the mentally ill cycling in and out of lockup

Arrest the urge to arrest. (Theodore Parisienne/for New York Daily News)

Chuck and I had an opportunity to meet with Cheryl Roberts and Francis J. Greenberger while in New York City this past fall.  We discussed their pilot program to develop an alternative to incarceration pilot facility to provide a secure “locked” therapeutic environment for those with serious and or chronic mental illness or personality disorders.

Laurie Goldstein

Today the New York Daily News printed an Op Ed by Green burger Center Executive Director Cheryl Roberts about the need to rethink the jail closure plan.  There are better ways to provide treatment and rehabilitation to people living with serious mental illnesses and substance use disorders and to end the cycle of homelessness and incarceration.

The city of Albany recently changed the name of the county jail from the Albany County Correctional Facility to the Albany County Corrections and Rehabilitative Services Center to reflect its broader mission to provide housing and services to homeless people.  Most importantly, staff from nonprofit organizations and civilians employed by the Sheriff’s department will provide these services outside of the criminal justice system.

In Florida, over the past two decades, nearly 9,000 people have been referred to a program created by Miami Dade County Judge Steven Leifman to divert individuals with serious mental illnesses away from the criminal justice system and into comprehensive community-based services. Annual recidivism rates among participants went from 75% to 20% and the jail population dropped by 40%, allowing the county to close one of its jails and save $12 million a year.

As New York City finalizes its plan to close Rikers, more diversion and less jails space is needed.

Not long ago, Albany County Sheriff Craig Apple changed the name of the county jail from the Albany County Correctional Facility to the Albany County Corrections and Rehabilitative Services Center to reflect its broader mission to provide housing and services to homeless people. Most importantly, staff from nonprofit organizations and civilians employed by the sheriff’s department will now provide these services — outside of the criminal justice system.

The cost to reconstruct the cells was $10,000. Things like televisions and kitchen appliances were donated.

Among the first clients to be admitted will be people released from jail who find themselves homeless. The goal is of course to keep them from cycling back into the criminal justice system.

Chances are Apple’s plan will save Albany County taxpayers hundreds of thousands of dollars a year, make the city safer and save lives. That’s what happened in Miami-Dade, Fla., when a judge started providing services and treatment to people who constantly cycled in and out of jails, hospitals or homelessness.

Over the past two decades, nearly 9,000 people have been referred to a program created by Judge Steven Leifman to divert individuals with serious mental illnesses away from the criminal justice system and into comprehensive community-based services. Annual recidivism rates among participants went from 75% to 20%. The jail population dropped by 45%, allowing the county to close one of its jails and save $12 million a year.

According to Miami police, officer shootings of people with serious mental illness went from two a month to six in the last eight years, over a time period during which the number of arrests in Dade County went from 118,000 to 54,000.

To build on this success, Dade County just broke ground on its own “one-stop shop” facility to allow judges the ability to provide people with serious mental illnesses accused of misdemeanors or low-level felony level crimes with an off-ramp from the criminal justice system with the goal of never seeing them again, at least not behind bars.

This facility will offer treatment for mental health, substance abuse, and primary medical care needs, including eye and dental care; a court room; a crisis stabilization center where police can bring someone instead of arresting them; short- and longer-term residential space; a day activity program to teach self-sufficiency skills; and a supportive culinary employment program.

As New York City grapples with how to replace Rikers in the name of progressive reform, it’s still not too late to consider building “one-stop shops” like Albany and Dade County.

New York City has already demonstrated a remarkable and unprecedented ability to reduce the jail population. Now, it must address the core populations that will make further reductions more difficult.

The host communities of the proposed borough-based jails and advocates want smaller facilities. The shortest route to delivering them is to do what Albany and Dade have done — to make room elsewhere to better serve people with specific chronic needs such as housing, mental health and substance-abuse treatment — none of which are or should be the forte of jails or the city’s Correction Department.

As it moves jail beds out of Rikers and into the boroughs, the city has a rare opportunity to build more treatment and rehabilitative beds, and to finally right the wrong of the decades-long mass incarceration of people with mental illness. Incarcerating this population has not been fair, effective or fiscally responsible to them or their families, nor to corrections officers or communities.

Now is the time to ensure that mental health treatment is provided outside of the criminal justice system and in the public health system, where it belonged in the first place.

Roberts is executive director of the Greenburger Center for Social and Criminal Justice.

Posted Sept 17th, 2019 New York Daily News

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How are People with Serious Mental Illness Faring in our Jails?

While attending a global mental health conference last fall, ACMI Vice President and Founding Director, Laurie Goldstein asked a psychiatrist from Trieste, Italy, “About how many persons with serious mental illness are in your jails?” The psychiatrist looked startled and replied, “We do not send our persons with mental illness to jail.” He went on to explain that if a person is experiencing a psychotic episode and the police are called, the police call the person’s psychiatrist, who treats the person until the person is stabilized. The Italian psychiatrist went on to explain that it is his “responsibility to prevent and also treat psychotic episodes, even if the person is jailed.  Community providers remain engaged and accountable for their patients’ progress. 

The Trieste Model, labeled by the World Health Organization (WHO) as one f the most progressive public psychiatry delivery systems, is now a collaborating center for mental health research with the WHO. The Trieste model manages to put the person at the center of the delivery system by 24-7 comprehensive treatment through a network of mental health centers that are “capable of dealing with the most severe conditions and of supporting clients in their daily life, with a view towards recovery and social inclusion.” https://zeroproject.org/practice/mental-health-department-whocc-italytrieste/   These 24-7 clinics not only replaced all psychiatric hospitals in Trieste, today fewer people go to jail because of the lack of continuity of care and cooperation between the law enforcement and mental health systems. The “sequential intercept model” enjoys deserved praise; Trieste shows that the first key intercept if effective clinical care. 

Whether the Trieste Model is transferrable or sustainable elsewhere is debatable.  But its existence and success generate food for thought about the relationship between the mental health and criminal justice systems in the United States and Arizona, specifically.  Our communities experience high profile incidents in which an individual living with a serious mental illness commits a horrific crime, often resulting in death or serious injury.  Often the individual is receiving services in the public behavioral health system, but in a psychotic state due to inadequate treatment either because of non-adherence or inadequate follow-up. 

Reactions to these events are intense and sometimes polarized.   Some believe the behavioral health industry “gets a pass” for poor management of potentially violent, seriously mentally ill “patients” who become “criminals.”   Some contend that mental illness should never excuse criminal conduct.  In terms of city, county and state fiscal accountability, there is no question that law enforcement and the corrections systems shoulder an increasing financial burden of caring for persons who commit a crime while they are enrolled in treatment in the behavioral health system.

          Consider that the Maricopa County jail, one of the largest in the country, “books” (admits) approximately 100,000 individuals each year.  Of these, approximately 8,200 (8.2%) of the total daily population are identified with SMI; another 16,000 (16%) have a significant mental health issue.  Once incarcerated at the jail, the cost of care for these detainees shifts to Correctional Health Services (CHS) and Maricopa County https://www.maricopa.gov/5161/About-Correctional-Health-Services-CHS   The Arizona Department of Corrections (ADC) has a similar patient population.  In 2015, approximately 26.6% of all ADC inmates receive mental health services; of these, 4.7% are classified as SMI. Nicole Taylor and Karen Hellman, MENTAL “HEALTH DISORDERS AND THE CRIMINAL JUSTICE SYSTEM,” Arizona Dept. of Corrections (2015) 

https://info.nicic.gov/nicrp/system/files/AZ%20DOC%20Mental%20Health%20Disorders%20and%20the%20Criminal%20Justice%20System.pdf

A defining difference in the “system” in Trieste, Italy, and Arizona (and the entire United States) is the presence of multiple payors and the involvement of private insurers in coverage decisions, rate setting, utilization management, and financing of health care services.   Nonetheless, we can ask how behavioral health providers can be more responsible and accountable for the ongoing treatment of individuals in their care who become the justice system-involved and end up in jail or prison?  Maybe dollars for care and services could “follow” the individual from clinic to jail or prison and back again? Maybe the county and state would bill the providers for treatment of incarcerated members?  Maybe community providers would treat the person post-incarceration on a contract basis?

There are no easy answers but many fascinating questions for innovation in the delivery of services, especially person-centered services.  The bureaucracies, payor systems, and pages of statutes and regulations are formidable obstacles.  But there is an opportunity to examine ways to more equitably and effectively deploy resources of law enforcement, corrections, and the behavioral health system to accomplish two goals:

  1. Reduce the likelihood that individuals living with SMI will become “justice system involved” ––an obfuscation of saying “committed a crime” or “got arrested”
  2. More equitably distribute fiscal and clinical responsibility for treating individuals in jail or prison.

Laurie Goldstein’s question to the Italian psychiatrist was simple but provocative.   “How many people with SMI are in your jail?”  Maybe Arizona can find some answers in Trieste, Italy, which reduced these numbers through a truly person-centered community delivery system.  Trieste, Italy does have a much smaller population that Maricopa County, so questions of scale and the intimacy of community is called into question. It may not be an fair comparison, but best practices may be applied in smaller clinical settings. In 2018, Trieste had a population of about 205,000 and it is the capital of the autonomous region Friuli-Venezia Giulia. The metropolitan population of Trieste is 410,000, with the city comprising about 240,000 inhabitants. Maricopa County is located in the south-central part of the U.S. state of Arizona. The U.S. Census Bureau estimated its population was 4,410,824 as of 2018, making it the state’s most populous county, and the fourth-most populous in the United States, containing more than half the population of Arizona. Wikipedia

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Filling Gaps in Continuum of Care: Swinging Bridges, Provider Culture, and Why Families’ Voices are Important

Dr. Michael Franczak, noted psychologist and population health scientist, sagely noted, “The continuum of care is really a series of swinging bridges over a very large canyon.”   Dr. Franczak’s language is poignant for families who long assist loved ones to navigate the particularly deep and wide “canyon” of chronic serious mental illness.  These families know that “provider culture matters.”  But too often, when we decide to redesign or add a bridge to the COC, we overlook these families as a valuable source of information about provider cultures. 

Nearly all behavioral health providers claim to be “person-centered”.   Most are not.  Most are “program-centered” — the patient must “fit” the program or move on.  If you can’t make it on a given bridge, you fall off or have to make it on your own – back or ahead.   Consequently, individuals living with chronic, serious mental illness often get ejected because the severity of their illness interferes with their ability to participation in “encounters.  Or their behaviors — which arise from their mental illness — are deemed “just not a good fit” for the program.   The individuals are expected but often unable to find footing (stay stable) and hang on to the swinging bridge.  They often end up homeless, re-hospitalized, arrested, or fall off the COC tumbling into the canyon.  And this cycle often repeats many times.

Patient-centered care describes an approach to providing health care in a manner that emphasizes and respects the needs, values, and choices of patients (Australian Commission on Safety and Quality in Health Care, 2010). It has been delineated into five key dimensions: (a) viewing health in a holistic manner, (b) seeing the patient as a person with needs that extend beyond their illness, (c) sharing power and responsibility with patients and helping them collaborate in their own care, (d) building therapeutic alliance with patients and maximizing the therapeutic value of the patient-provider relationship, and (e) understanding how the personal qualities of the provider influences quality of care (Mead & Bower, 2000). Recovery-oriented care shares many of these same features (U.S. Department of Health and Human Services, 2009). Published research on patient-centered care and the related topics of patient engagement and recovery-oriented care have begun to demonstrate that involving patients in care processes, including the planning and the delivery of health services, will improve outcomes (Resnick & Rosenheck, 2008; Sidani, 2008; Warner, 2010). James D. Livingston, Alicia Nijdam-Jones & Johann Brink (2012) A tale of two cultures: examining patient-centered care in a forensic mental health hospital, Journal of Forensic Psychiatry & Psychology, 23:3, 345-360, DOI: 10.1080/14789949.2012.668214

  The behavioral health industry incentivizes “program-centered” delivery by financially rewarding organizations that serve a large number of members with services appropriate for most members and for which the program is guaranteed reimbursement.  Providers sometimes achieve good performance metrics by rejecting or ejecting “high-utilizers” who need more services than existing performance measures identify and incorporate, and which are expensive and difficult to provide in “standard” programs.  Whether a given program “cherry-picks” members for financial gain or ease of practice or lacks adequately trained and experienced staff, the result is the same: individuals living with chronic SMI often get excluded and tumble into the canyon below.  Their recovery journey is interrupted, sometimes perilously ended.

  Some providers are truly “person-centered”.  These providers develop ways to use program protocols as guidelines, but they develop meaningful Individual Service Plans (ISPs) to support each patient’s progress in a strength-based, person-centered recovery journey.  The program adjusts to fit the person, not vice versa.  These providers create ways to steady the swinging bridges. The individual is able to remain on the recovery journey, perhaps pausing longer on one bridge than other individuals in order to stabilize. Truly person-centered culture thus permits individuals to remain on the COC, move from bridge to bridge, avoid the perils in the canyon below, and gain strength to meet the challenges ahead.

When even a few families gather, we often hear and see remarkable information and wisdom gleaned through decades of lived-experience helping loved ones navigate the COC — swinging bridges and all.  Family members “know” the frustrating (and dangerous) reality of an individual with chronic serious mental illness being ejected from programs due to the chronicity and severity of the very illness that brought the individual to the program.  Family members keep journals, photos, arrest records, bills from hospitals emergency rooms, and more.  When we stitch together family stories about different providers’ culture of care over time in a given locale, we gain deeper understanding of how specific provider’s culture facilitates or impedes a recovery journey, especially for those living with chronic SMI.  The voice of persons with serious mental illness also have a very significant perspective that needs to be heard. Without shared responsibility for the treatment plan, most people struggle to achieve recovery.

           Unfortunately, families often are excluded from meaningful interaction in many facets of the recovery model as often implemented by some providers.  But families are least utilized in what may be the most important aspect of developing successful new programs to fil the gaps on the COC: evaluation of providers who run truly person-centered care.  This is unfortunate and undermines fully informed public policy.  

Family members often know which specific providers, despite being rewarded for “good numbers” under traditional performance metrics, may have done so at the expense of good care for hose living with chronic SMI.  Family members can identify providers who are skilled enough and oriented to implement truly person-centered services in a strength-based recovery program. Family members know which providers manage to connect the swinging bridges on the COC, even for individuals who are non-adherent to treatment or have Anosognosia or must manage co-occurring disorders … or all of these.

As we try to find new, clinically appropriate options to fill gaps between the swinging bridges on the COC for those living with chronic SMI, qualitative factors should be more prominent in the selection of providers for programs and evaluation of providers across all programs.   Qualitative factors may appear to be more difficult to evaluate, may appear somewhat subjective, and may be harder to “defend” than purely quantitative factors. The number of crisis interventions or hospitalizations is easy to count.  Evaluating patient-centered culture is not so simple. But information from families is rich, powerful, and provides human insight not available from quantitative performance metrics.  Contemporary mixed methods provider evaluation is possible and beneficial.  And qualitative data gleaned from interviews with families about their experiences with specific providers will add “depth of understanding to complement breadth of understanding afforded by quantitative methods.”  Palinkas LA. Qualitative and mixed methods in mental health services and implementation research. J Clin Child Adolesc Psychol. 2014;43(6):851–861.doi:10.1080/15374416.2014.910791. PMID: 25350675.

Family members of those on a recovery journey with chronic serious mental illness are an important source of information to identify providers who offer truly patient-centered care for those living with chronic serious mental illness.    Providers with demonstrated person-centered culture should be embraced as essential to steadying those swinging bridges in the COC for those living with chronic SMI and trying to traverse the very large canyon below.

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Does Involuntary Treatment Work?

There is often debate about whether involuntary treatment works if the individual is not ready to engage in their own recovery. Individual choice of treatment is always preferable, but not always safe for the patient or others.”

SUMMARY: Patients with psychiatric disorders refuse medications for a variety of reasons, including experience with, or fear of, side effects. In other cases, the refusal is based on lack of awareness of illness (anosognosia) or on delusional beliefs. Many such patients must ultimately be medicated involuntarily. Studies suggest that the long-term effects of involuntary medication on individuals with schizophrenia and manic-depressive illness (bipolar disorder) are more beneficial than is commonly thought. In most studies, the majority of patients retrospectively agreed that the use of involuntary medication (i.e. involuntary (forced) treatment) had been in their best interest. Anecdotal claims by opponents of forced treatment that involuntary treatment has widespread, devastating, and lasting effects are not supported by these studies.

“We already knew AOT an effective treatment option that saves lives. The report shows it saves money, too, even in geographically different settings where it is being put to work in dramatically different ways.” Doris A. Fuller, executive director of the Treatment Advocacy Center.

Last year in Maricopa County, Arizona, there were 3,600 Court Ordered Evaluations (COE) requested. Of those evaluations, 2,600 Mercy Care adult members were assigned Assisted Outpatient Treatment (AOT).  In order for a person to meet criteria for court ordered psychiatric treatment under Title 36, they must be either unwilling or unable to accept treatment voluntarily.  “Unable” would apply to those who lack sufficient understanding of their psychiatric condition, or of the advantages vs. disadvantages of various treatment options, to make an informed decision, even after efforts were made to inform them fully. Involuntary treatment does not equate with “medication only”, as medication is not the sum total of psychiatric treatment; while it has a major role for treatment of some major mental illnesses, for other conditions it is less central to the treatment plan.  For example, a person who is acutely distraught due to a life event (e.g. death of a spouse) might, in rare cases, need involuntary hospitalization if he/she became suicidal and was unwilling to seek help, but medication might not be required in that situation. Psychotherapy and counseling may be a more sensible option.

In Arizona, AOT is the Title 36 Court Ordered Treatment (COT) which allows a certain number of involuntary inpatient days each year and appoints an outpatient provider responsible for supervising and administering the outpatient treatment with the option of forced administration of medication on an outpatient basis.  The mental health court has the authority to bring the person back into an inpatient setting at any time (the outpatient team can request that the judge order the person back to the hospital) as long as there are inpatient days remaining on the order.  These 2,600 Mercy Care members are in our SMI, ACC, and ALTCS plans.  In addition to Mercy Care, there are another 6 ACC plans and 1 other ALTCS plan in Maricopa County which also have members on COT. AHCCCS recently implemented identification of COT members statewide so AHCCCS would be able report how many adults statewide are on COT. 

For Assertive Community Treatment (ACT) team providers, findings include:

  • Psychiatric hospitalizations per 1000 members have decreased 21% (compared to an 8% reduction of psychiatric hospitalization in prior year)
  • Medical hospitalizations per 1000 members have decreased 12%;
  • Emergency department visits per 1000 members have decreased by 11% (compared to a 6% reduction in prior year);
  • Homelessness per 1000 members has decreased by 19%

For Forensic ACT team providers, findings include:

  • A forensic ACT team achieved a 57% reduction in the number of jail bookings;
  • A 54% reduction in psychiatric hospital admission (compared to a 31% reduction in prior year);
  • An 27% reduction in Emergency department visits (compared to an 18% reduction in prior year); and
  • A 45% reduction in medical admissions

https://www.azahcccs.gov/AHCCCS/Downloads/ArnoldVSarn/AnnualReports/AHCCCS_Service_Capacity_Assessment_2018_FINAL_07_20_2018.pdf

Court-ordered treatment (COT -a type of involuntary treatment-) in the community reduces taxpayer costs associated with untreated serious mental illness for individuals stuck in the “revolving door” of repeated hospitalization, incarceration and other consequences of non-treatment, according to a report issued Wednesday.

The study, conducted by Health Management Associates, found that the costs of serving clients in assisted outpatient treatment (“AOT”) were more than offset by the reduced need for inpatient hospitalization and other high-cost services. A net public savings resulted.

Thomas Insel, director of the National Institute of Mental Health, has estimated that the total cost of non-treatment to the government—including things like Medicare, Medicaid, disability support and lost productivity—is as much as $317 billion per year. Other studies have suggested that it costs federal, state and local governments $40,000 to $60,000/year to care for a single homeless person with a serious mental illness. There are roughly 250,000 mentally ill homeless people in the U.S. today. New Study: “Assisted Outpatient Treatment Saves More Taxpayer Money Than It Costs” Arlington, VA (PRWEB) February 18, 2015

Nine patients, seven with schizophrenia and two with bipolar disorder, refused medication when admitted to a psychiatric unit. All nine were given a single injection of long-acting fluphenazine decanoate. At the end of two weeks, their symptoms were markedly improved (BPRS improved from 10.4 to 4.1), and all were accepting medication voluntarily. Keisling R. “Characteristics and outcome of patients who refuse medication.” Hospital and Community Psychiatry 34:847–848, 1983.

Twelve patients refused medication when admitted to a psychiatric unit. Three-quarters of them were diagnosed with schizophrenia or bipolar disorder. Compared to a control group that accepted medication, the refusers had less insight into their illness, were more psychotic, had higher mood elevation, and were more grandiose. After two weeks of medication, six of the patients (50 percent) no longer wished to refuse medication. “They were more likely to view medications as important for their illness and were less likely to believe in alternative treatments.” The other six patients “still preferred to refuse treatment despite considerable improvement in their clinical condition.” Marder SR et al. “A study of medication refusal by involuntary psychiatric patients.” Hospital and Community Psychiatry 35:724–726, 1984.

Twenty-four patients who had been involuntarily medicated with antipsychotic medication were interviewed at the time of discharge from the hospital. Sixteen (67 percent) were diagnosed with schizophrenia or bipolar disorder, and 5 more (21 percent) with atypical psychosis. Thirty-three percent of the patients said they had refused medication because they believed they had no need for it, 29 percent said they had refused medication because of “severe confusion or psychotic ideation,” and 17 percent “stated that they did not know why they [had] refused medication.” At discharge, 17 patients (71 percent) agreed that the decision to involuntarily medicate them had been correct and agreed with the statement: “If I become ill again and require medication, I believe it should be given to me even if I don’t want it at the time.” The 7 patients (29 percent) who disagreed scored high on measures of grandiosity, hostility, and suspiciousness; 6 of them had a diagnosis of bipolar disorder. The authors concluded that “it is impossible to avoid the conclusion that the treatment refusal of every patient in our sample was influenced by psychosis.” Schwartz HI et al. “Autonomy and the right to refuse treatment: patients’ attitudes after involuntary medication.” Hospital and Community Psychiatry 39:1049–1054, 1988.”

Eleven patients who had been forcibly medicated during their psychiatric hospitalization were retrospectively interviewed. Seven strongly agreed and two somewhat agreed (thus 82 percent total) that their involuntary treatment had been useful. Seide M et al. “The reluctant psychiatric patient: ethics and efficacy around the issue of forced medication” (Session 2219). American Public Health Association 117th Annual Meeting, Chicago, October 24, 1989.

Seventy-nine patients who had been placed under guardianship, 75 (95 percent) of whom had been involuntarily medicated, were asked to retrospectively fill out a questionnaire. Eighty-seven percent of the patients had been diagnosed with schizophrenia or bipolar disorder. The results were as follows:

Do you have a mental illness?

  • definitely/probably not – 47%
  • don’t know – 9%
  • definitely/probably do – 44%

How helpful was your guardianship?

  • very/fairly helpful – 45%
  • neutral – 21%
  • very/fairly unhelpful – 34%

There was a high correlation between patients who believed they had a mental illness and those who found the guardianship helpful (p < .01). The authors concluded that “although a majority of the patients were against enforced treatment in principle, often because they thought it conflicted with their civil rights, most found the actual experience, including medication, to be helpful.”

Adams NHS and Hafner RJ. “Attitudes of psychiatric patients and their relatives to involuntary treatment.” Australian and New Zealand Journal of Psychiatry 25:231–237, 1991.

Retrospectively, 18 patients (60 percent) said that having forced medication was a good idea, 9 (30 percent) disagreed, and 3 (10 percent) were unsure. Most of those who disagreed had either paranoid schizophrenia or bipolar disorder with grandiosity. The authors concluded that “forced medication frequently restores the capacity to make competent decisions and often results in a more rapid return of freedom to be discharged from involuntary hospitalization.” Greenberg WM et al. “Patients’ attitudes toward having been forcibly medicated.” Bulletin of the American Academy of Psychiatry and the Law 24:513–524, 1996.

Tom Szasz was the probably the greatest defender of patient rights since Pinel (the father of modern psychiatry) who, two centuries ago, started the profession off on the right foot by releasing the mentally ill from their chains.

Tom’s landmark book “The Myth of Mental Illness”, written one half century ago, contained a crusading Bill of Rights for psychiatric patients. He argued passionately for the dignity and freedom of choice of mentally ill inmates who were then often warehoused for life in hospitals that were aptly compared to snake pits. Allen J Frances M.D posed to Tom a hypothetical in which his son was having a transient psychotic episode, was hearing voices commanding that he kill himself, felt compelled to act on this, and refused treatment. As a father, would you stand by your libertarian principles or protect your son from himself, even if this required coercion. Tom smiled ruefully and said: “I am a father first and protector of human rights second.

Leon’s story:

My story begins as a young man from Ohio. I was born in a small football city. So much so, that all of the little boys are born with small orange and black footballs in their cribs! I was very active in sports and performance in school. An aspiring actor as it were. The town I was raised in was also known for being a city of parties in addition to having a talented football team.

My teenage years were filled with parties, alcohol, marijuana, girls, and excitement. But my relationship with alcohol and marijuana were anything but standard. I found myself using pot every day habitually and drinking on the weekends in excess routinely. This carried into my early twenties. Being a workaholic in addition to an addict eventually caught up to me. I had a mental breakdown in the workplace, which lead to me checking myself into a psychiatric hospital. I was diagnosed as having bi-polar disorder and was later diagnosed as having schizoaffective disorder.

Fast forward to the age of twenty-five. At this point, I was prescribed medication to take care of my symptoms. However, I chose to forgo my medication in favor of self-medicating with marijuana. The marijuana only perseverated my symptoms as I began to experience auditory hallucinations and delusions. One day, while I was in a moment of delirium, a relative and I got into an altercation that resulted in me hurting the other person. I was arrested and eventually sentenced to stay at the Arizona State Hospital for a very extended period of time.

It was at this point that I had a choice to make. I could retreat and isolate back to my room where I could wait out my time – only to be released and continue my tragic cycle. Or I could make the best out of a tough situation. I chose the latter! First, I chose to take college courses while in the hospital. I was one of only three people who had ever finished their Associates degree in the long history of the State Hospital. Then I opted to join the Arizona State Hospital Human rights committee along with being a representative of the Community Reintegration Unit to the hospital administration during my stay. I was able to assist in reaching agreements for new privileges for us, the patients on my unit. When I was awarded access to passes to the community, I found a job at a local hobby shop where I worked during the day and then returned to the hospital in the evening. And I also received my Peer Support Specialist Certification and CPR certification from Hope Lives – Vive la Esperanza. Additionally, I became involved in Alcoholic Anonymous and found a sponsor who walked me though the principles of the program. My goal became to leave a legacy for the other patients to follow and model hope and recovery for them.

When I was released from the hospital I was destitute. I relied on the kindness and guidance of my relatives, friends, sponsor, and clinical team. Eventually, my journey lead me to MARC Community Resources where I got involved in the Work Adjustment Training Program. I started in the classroom, teaching vocational skills to the other members. Eventually, the coordinator was impressed enough with my skills to hire me on as staff for MARC! This was a windfall for me. I continued to teach in addition to supervising the participants of the program at the St. Mary’s Food Bank in Phoenix. I found my skills rapidly growing – both as a teacher and advocate as I became a member of the AHCCCS Behavioral Health Planning Council. Later, I was promoted at MARC to become the Peer Support Training Coordinator and Trainer. I am currently the trainer along with my co-facilitator Bruce Purcell. I still teach vocational skills and I also have the privilege of bringing the Work Adjustment Training Program to the patients of the Arizona State Hospital as a representative of MARC… life really has come full circle!

In short, my experience in the hospital was a blessing in disguise for me. I learned more about myself and my illness while in there than I ever did in the community. And I used the resources available to me to help others and live comfortably. Truly a life changing experience.

Leon Canty

Kevin’s story:

I would say that at the time I would not have voluntarily entered into treatment, even while on COT, I still did not believe I needed to take medication or stay in treatment facilities that were open. I would just run away due to my impulsiveness. I experienced homelessness, arrest for sleeping in an apartment complex recreation area, and was generally scared all of the time. I felt people were trying to control my mind and had delusions about people and the environment. Eventually I ended up in a situation that could have gotten me killed, I broke into a apartment to stop the voices that were tormenting me through the walls.

Being in ASH helped me because I was away from the chaos for a long enough time, so I was able to think clearly. It was good to live in an environment where I could spend money at the bank, go to the café or store, do artwork in the studio, work part time and have a girlfriend. It was then I was able to realize what life could be like if I just took my medication and stayed off illegal drugs. All of the staff were very supportive and encouraged me to keep up the good behaviors, so I would not have to return to a locked down Level 1 hospital. I have not been in the hospital for four years, that is an all-time record for me. Since my release in 2015, I was able to repair damaged relationships with my siblings once I was stable and now have a good life. I hope everyone has the same opportunity as I had to recover in a safe place, so they can learn how to take care of themselves and learn to live again. I feel I was given a new chance at life, I am blessed.

Kevin

Jill’s story

One day several years ago a therapist escorted me to the ER for a mental health evaluation.  With my refusal for treatment and promise that I was no longer suicidal, I was released.  But my delusional thinking had convinced me that I was to die by suicide on that day.  I wanted nothing to stand in the way.  So, when I left the ER, I attempted to take my life. Three days later, I woke up handcuffed to a hospital bed. I was angry to still be alive. I was admitted to a psychiatric unit without my consent. 

I was forced into treatment in a locked unit. It was not just the 72-hour hold, or until my medications were stable, but it was long enough for me to receive and begin treatment. Long enough for the doctors to really see what was going on.  Long enough for me to be clear enough to participate in my own recovery. Most important is that today I can share this incident, because they protected me from myself, against my then “Better Judgement”.

I am now a small business owner. 

Forced treatment saved my life!

Jill

Jan’s family story:

For the past two years our daughter was living homeless on the streets of downtown Phoenix. She was in and out of psychiatric hospitals and arrested on numerous occasions due to acts consistent with mental illness and substance abuse. Her stay in psychiatric hospitals had been at the most 7  days but most of the time 3-4 days. Once she was held over night and then released to the streets again to repeat the cycle of behaviors that had caused her to be picked up in the first place.  There was almost a weekly “event”. She refused treatment of any kind and refused to live with us where she would have been safe and been taken to counseling, doctors, and therapy. Police officers often told she needed mental health treatment. We had been told over and over that there was nothing we could do until she said something or did something that was a threat to herself or others and that she needed to hit bottom. However, the bottom is often death for the individual or others.

It became very clear to us that she was going to die on the street if we did not do something other than what we had tried before. She was being assaulted on the street repeatedly and was refusing medical or dental help when offered. Police often found her face down in warehouse lots or in makeshift box houses.

It took us acquiring a lawyer and learning about PAD (persistently and acutely disabled diagnosis) in order to start the process of getting her in a position to be helped. We also were given guardianship. For the first time, she was held at the psychiatric hospital long enough to not only stabilize, but to also be given the correct medication. She was there for about a month.

For the first time in many years, she is living with us and she is emotionally stable. She has continued her meds and is cooperative and pleasant to be with. She has rejoined our family and is trying to pursue employment.

Forced treatment saved her life. It has never been our intent for her to be locked up forever or longer than necessary. Without getting the proper psychiatric care, she was getting locked up anyway in the jails where her mental health needs were not being addressed, but exacerbated Often, she was put in solitary confinement.

I hope that changes will be made so that the mentally ill will be treated with dignity and provided the help that would most benefit their recovery. Long term, secure care is often needed in order to save their lives and provide them the time to be properly diagnosed and recover.

Jan

Eric’s family story:

If it were not for involuntary court ordered treatment, I believe my son would not be alive or minimally incarcerated today.  However, this is a happy story, because I was able to push through all the barriers that were stopping me from getting him the help he desperately needed and deserved.

Understandably, not everyone has someone in their life that is willing or able to do what it takes to push through the bureaucracy to get the treatment that their loved one deserves.

There are laws on the books that allow for involuntary treatment for those suffering with mental illness, in most states.  However, in 13 states, including Arizona, if someone is presenting with the signs of mental illness and also suffer from addiction, the doctors have got to decide if it is the drugs that is causing the delusions or the mental illness within the first 24 hours of being held. 

There is no legal way to proceed with court ordered treatment for someone who is suffering with substance abuse disorders, in Arizona.   

My son is far from this man that he had become when he was not properly medicated. He is almost the complete opposite, as a matter of fact.  He had been a top selling waiter in fine dining restaurants for many years and a very kind soul.  He had a mental breakdown and I needed to help him and I couldn’t.  

Even though he was presenting with extreme manic grandiose bi-polar symptoms and posting disturbingly violent comments on the Internet, my son was aware enough to share the keywords that the medical professionals needed to hear:  “I am not a danger to myself or to others (DTS/DTO) .”

Urgent Psychiatric Care Center also knew that my son had a previous history of substance abuse.  Because of this history, the social worker told me that he would be released without treatment or further observation.  I was astounded and a bit hysterical, because I was so frightened for my son’s life and they would not help me help him. 

What was also maddening is that when I asked the doctors and social workers to look at my son’s internet posts, they refused to do so, saying that it is considered hearsay, because they can’t prove that it was him posting.  They also said that they were not allowed to look at social media posts and signed documents that restricted their viewing of their patients posts due to some HIPAA laws.  It is mind boggling, in this day and age, that our first line of defense, the psychiatric units and social workers are not allowed to utilize social media to help diagnose serious mental illness issues.

In my opinion, the medical providers should be our first line of defense (red flag watchers) for protection to the community and first line of offense and protection of that person that is suffering from mental illness and/or substance abuse disorders.   These people need treatment, not prison!!

It took me four handwritten 6-8 page petitions to get my son, Eric the help he needed   Each time, the police had to go pick him up, which is frightening in itself and each time the medical professionals/system would release my son back on to the streets.

It was about 1.5 weeks’ time, many phone calls, emails and faxes in order to get my son admitted for treatment.  It was not until I contacted my Congressman’s office, did I get my son admitted into the Urgent Psychiatric Care Center for treatment.  

When you don’t have guardianship and you are a parent of an unmarried adult child, it is even harder to get help because of the overly restrictive HIPPA laws.  Sure, if your loved one is sane and able, they can sign papers giving you the right to help, but even that is minimal.

I had all 3 Powers of Attorney, which included mental health Power of Attorney to help get my son the treatment he needed, involuntarily, and I could not get him treatment.  I learned the hard way that the psychiatrist would not deem him “incapacitated,” so my Powers of Attorney were useless when I really needed them. 

My son, Eric, did not want treatment.  He did not think he needed it.  He had no idea what was happening to him and he was in complete denial that he had any problem at all.  The doctors chose not to help him get treatment for whatever no good reason they could or had to come up with.

It was horrible, seeing my child, even at age 30, fall away from me and all my efforts to get him back to safety and sanity was being turned away.   In my opinion, if anyone thinks that it is easy to get help for those who want it, either voluntarily or involuntarily, think again.  

We need a system in place that allows for involuntary treatment to occur with much more ease than it does today.  We have an epidemic across America with approximately 200 people every single day dying with issues related to mental illness and substance abuse disorders.  

I’m proposing we in Arizona bring into legislations such as Ricky’s Law in Washington state. https://www.wsha.org/articles/new-requirements-hb1713-rickys-law/

Fortunately, and with much perseverance, after 8 months of in-patient and 3 months of out-patient treatment, my son, Eric is doing better than ever because of the Involuntary Court Ordered Treatment that I was finally able to get for my son. 

I am one of the lucky ones.  He is still alive, healthy and his mind is stabilized again. 

There are no more delusions or voices, he quit smoking, he is looking to go back to school to finish his degree and is committed to sobriety… because of involuntary court-ordered treatment.  

Eric, over time, has gained the insight to value his freedom and sobriety and understand his mental illness more than I’ve ever seen before and it has been a long time…15 years.    This Involuntary Treatment program is what seems to be working better than everything else we have tried.   

When I asked Eric about this article and how he felt about involuntary court ordered treatment, he said at first, he felt like he was backed into a corner.   It was hard to accept that he was ill.  He also believes without the ordered treatment he would not have sought treatment on his own and certainly not be doing as well as he is today.

In Eric’s words he “now has hope he can become the man he is capable of being.

Involuntary Treatment works.   With more funding for facilities and streamlining these judicial and medical processes, loosening up the HIPAA laws to common sense laws, those suffering with mental illness and substance abuse disorders will be much better off than if they we do nothing at all and so will our society.  We will save lives…lots and lots of lives and many have, can and will become healthy contributors to society. 

Gail

Dick’s family story:

My son has schizo-affective disorder.  He sometimes neglects his medication when his illness interferes with his comprehending the need for medication.  He places himself in harm’s way without his meds.  So, his family, clinical team and psychiatrist have asked judges to place him on court ordered treatment (“COT”), a legal and enforceable obligation to allow monthly injections of anti-psychotic medication. 

These injections can ameliorate his symptoms (voices, delusions, etc.) to varying degrees depending on the culture of his living arrangement.  For many years he has lived in various group living and treatment facilities, most of which have been “program-centered”, i.e. the patient must adhere to strict program protocols or be ejected, which can result in living in the streets, “halfway houses” or even jail (these places have been part of his lived experience).  Persons whose mental illness is chronic often cannot adhere to such protocols due to the severity of their illness.  COT loses much of its value in a “program-centered” culture or in the streets or in jail.

He now lives in a group home operated by an agency with a “person-centered” culture (all agencies will claim to be “person-centered”, but most are not).  This agency uses program protocols as “guidelines” rather than strict rules, tailors treatment to the needs of the individual and does not eject patients for non-adherence to rules.  COT and other treatment elements are much more effective in a “person-centered” living arrangement operated by an agency with an explicitly “person-centered” culture, where such culture is a reality rather than a slogan.

The Association for the Chronically Mentally Ill (“ACMI”) is helping to develop “court ordered places” where chronically afflicted patients can receive long-term care, tailored to their individual and varying needs, as an alternative to the streets or jails – to fill a glaring gap in our “continuum of care”.  Meanwhile, ACMI can help families identify agencies with “person-centered” cultures most helpful to their loved ones with chronic mental illness.

Dick Dunseath, Board member Association for the Chronically Mentally Ill 

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What are the consequences of an inadequate number of long term public psychiatric inpatient beds?

How many beds are enough?

According to the Treatment Advocacy Center, “The United States is in the midst of a psychiatric bed shortage that worsens every year. By early 2016, the practice of closing state mental hospitals, often called “deinstitutionalization,” had eliminated more than 96% of the last-resort in-patient psychiatric beds that existed in the mid-1950s; after a brief period of expansion in the 1990s, private hospitals, too, are shrinking their psychiatric in-patient capacity. The consequences are many and far-ranging, yet most states continue to decrease the number of state hospital beds they supply per capita and, because of financial disincentives, private and other inpatient-service providers are not stepping in to replace those that are lost. Despite widespread consensus that “more beds are needed,” neither the United States nor its individual states have conducted research to establish evidence-based bed supply ranges. The Treatment Advocacy Center in 2008 published the most commonly cited bed target in the United States — 40 to 60 beds per 100,000 people — but no official effort has been made to validate or revise this number. New computer modeling holds promise for developing evidence-based targets in the future.”

In 2008, the Treatment Advocacy Center published a study that included a safe minimum number of public beds for adequate psychiatric services per 100,000 populations. Estimates were solicited “from 15 experts on psychiatric care in the US, [including] individuals who have run private and state psychiatric hospitals, county mental health programs, and experts on serious psychiatric disorders.” Participating experts were asked to estimate beds for children and forensic (criminal justice-involved) patients, as well as civil, adult patients. An estimated range of 40-60 public psychiatric beds per 100,000 people emerged, with a consensus around 50 beds per 100,000 population. Across the 34-member Organization for Economic Cooperation and Development (OECD), to which the United States belongs, the median number of psychiatric beds per 100,000 people in 2014 was 68 beds. This suggests that international policy and practice are operating slightly above the upper end of the consensus range.

How is Arizona doing?

Public Psychiatric Beds in Arizona

A minimum of 50 beds per 100,000 people is considered necessary to provide minimally adequate treatment for individuals with severe mental illness. Like every state, Arizona fails to meet this minimum standard.

 (SOURCE: GOING, GOING, GONE: TRENDS AND CONSEQUENCES OF ELIMINATING STATE PSYCHIATRIC BEDS, Treatment Advocacy Center, 2016)

*

https://www.azdhs.gov/documents/director/agency-reports/ash/2017-ash-annual-report.pdf

Overall Arizona has a very low number of State Hospital beds per capita – the number of beds available to those in Maricopa County borders on the absurd. In Maricopa County – where 61% of Arizona’s population resides – we have 1.2 beds per 100,000 (55 beds for 4.3 million people). This is unthinkable. This creates an extreme risk for our community.  Trying to treat people in the community who need inpatient, longer term care for stabilization and to get on a solid path to recovery, is exponentially more expensive and inhumane.  They cycle in an out of hospital ERs, jail, and prison with episodic or no care.

According to one local provider when analyzing population health data, of the 1,000 in-patient hospitalizations last year, a small number of folks (147) were responsible for most repeated in-patient stays.

Why?

We do not have enough long-term beds. In Arizona the only current program/facility that provides for longer term care for individuals with a chronic mental illness is the Arizona State Hospital.  The hospital has a limit of 55 beds allocated for Maricopa County based on a long running lawsuit (Arnold v Sarn). Maricopa county is the most populous county in AZ.  The other inpatient facilities are designed for shorter term stays many of whom are Institutes for Mental Disease or IMD’d that have a length of stay limit of 15 days.   While many people can become stable in a 15-day period, many require longer term care to achieve stability.  For someone that is homeless or lacks other resources or supports, its challenging if not impossible to put these resources in place in that time.  The result is that many people have repeat admissions to community inpatient settings where if they had the length of stay necessary for them to attain stability, their recovery would be more likely.

Other psychiatric hospitals generally have ultra-short hospital stays for patients who do get admitted to turn beds over. These short-term hospitalizations are far too short to effectively stabilize persons with the most severe psychiatric symptoms.

Consequences due to lack of public long-term psychiatric beds:

  • Frequent hospitalizations
  • Many emergency room visits where patients may be boarded awaiting availability of an in-patient psychiatric bed
  • Arrests for crimes related to their untreated or undertreated mental illness
  • Acutely ill individuals left untreated to suffer consequences that are often dire and sometimes fatal to themselves or others
  • Chronic homelessness (up to 40% of chronically homeless people also are persons with mental illness)

Prevalence and Treatment Rates (nationwide)* (Treatment Advocacy Center)

  • 8.3 million adults with schizophrenia or bipolar disorder (3.3% of the population) +
    • 5.5 million – approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
    • 2.8 million – approximate number with schizophrenia (1.1% of the population), 40% untreated+
  • 3.9 million – approximate number untreated in any given year (1.6% of the total population) +

Consequences of Non-treatment*

  • 169,000 homeless people with serious mental illness**
  • 383,000 inmates with mental illness in jails and prisons
  • 50% – estimated percentage of individuals with schizophrenia or bipolar disease who attempt suicide during their lifetimes
  • 44,193 suicide deaths in 2015
  • 10% – estimated percentage of homicides involving an offender with serious mental illness
  • (approximately 1,425 per year at 2014 homicide rates)
  • 29% – estimated percentage of family homicides associated with serious mental illness
  • 50% – estimated percentage of mass killings associated with serious mental illness

* Numbers and percentages of US adults

+National Institute of Mental Health, 2016

**2015 Annual Homeless Assessment Report

What can we do?

ACMI advocated for and won legislative victory dedicated to expanding the continuum of care in Arizona to include secure residential treatment in the community. This level of care can satisfy the required longer-term stabilization once a patient is no longer medically requiring a level 1 in-patient psychiatric stay. Secure residential treatment facilities are a new addition to the continuum of care, not a replacement or alternative to short term in-patient psychiatric hospitals like Desert Vista or a long-term facility like Arizona State Hospital (ASH). 

There already exist secured residential treatment settings in AZ, e.g.: for adolescents. This year’s legislation and subsequent new licensing will permit similar recovery-based treatment for adults that have been unsuccessful with the current behavioral health treatment offerings.

Who is the target population for secure treatment?

Characteristics of the target population for Secure Treatment Facility:

  • Have failed at treatment in unrestricted community living

and

  • All referrals should have serious mental illness too severe to live with family or friends.
  • Failed multiple attempts at living independently.
  • May have been unsuccessful at other programs and housing settings.
  • Have had many contacts with fire paramedics, police and the judicial system.
  • They also may suffer from addiction which often is grounds for eviction from other programs.
  • The target population may improve under supervised treatment, but often relapse when released too soon to have benefited from a long term supportive and therapeutic environment.

All persons considered for Secure Residential Treatment will have a court proceeding with counsel.

ACMI board members are committed to the recovery model and believe that all individuals that have been unsuccessful in the current offering deserve a chance for recovering in a safe setting.

Secure Treatment FAQs

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Want To End Stigma? Stop Spending Time and $ On Changing Minds & Fund Research

BY PETE EARLEY

Well known journalist and author Pete Earley published the following blog about ACMI board members’ story.

(3-1-19) We spend much time, money and effort fighting stigma. Charles Goldstein, a parent of an adult son with a serious mental illness, a doctor and a mental health advocate recently questioned the value of such efforts. Put simply: Is it worth our time and money? Here’s a copy of a speech that he gave before the Council for the Advancement of Global Mental Health Research at Columbia University.

Mental Illness, Stigma and Leprosy 

To whom it may concern (and I believe that would be everyone).

My name is Charles Goldstein, I’m a retired emergency physician who’s worked in Phoenix Arizona in a busy metropolitan ER for over 40 years. I’ve worked with the mentally ill who were brought to or dropped off at my emergency room, usually inappropriately, because that’s one of the least helpful environments people with mental illness can be in. Almost none of the time that I was dealing with people with mental illness was I treating them, but more was trying to facilitate an appropriate discharge from the ER to someplace that might help them, a Herculean effort in and of itself. In addition, I have had the good fortune to work with very dedicated people striving to help people with mental illness. For the last 4 – 6 years or so I have become quite involved with organizations that do this good work; through this experience and because my wife, Laurie, and I personally have raised a child (now man) who has serious mental illness, I have a few things to say on the subject.

Mental illness, and particularly serious mental illness, afflicts an awful lot of people.

About 20 to 25% of the total population of the US has some form of identifiable mental illness and approximately 3 to 4% of the population have a serious mental illness such as schizophrenia, bipolar disease, or clinical depression. While there are many medications and forms of therapy which can help people with mental illness, none of them actually cure the disease. There are many problems that beset people with mental illness, but I believe in general there are two problems which the people who have various forms of this disease have in common in dealing with our society. These are ignorance and stigma.

We believe we have come a long way in reducing societal ignorance when it comes to mental illness.

Even as little as 50 to 60 years ago nobody, or very few people, had any idea that this was actually a chronic illness much the same as, say, chronic obstructive lung disease, diabetes, or chronic renal disease. I believe we’ve come a long way in recognizing mental illness as a chronic, as yet incurable, disease much like the diseases I’ve mentioned above. Combating ignorance about mental illness with educational programs and the like have made good headway in raising awareness and understanding for the unfortunates with this chronic illness; but, nonetheless, to compare it with the chronic diseases listed above is not a good analogy because there is another aspect of society’s attitude towards mental illness, and that is the problem of STIGMA.

Why, indeed, is there stigma involved with the disease of mental illness, but no stigma involved with the other chronic diseases that I’ve mentioned above such as diabetes?

I believe that the reason for Stigma has to do with the symptomatology. People with diabetes, heart disease, renal disease exhibit symptoms as well as those people with mental illness, however these disease elicit only sympathy from members of society. The symptoms of mental illness on the other hand are at best alarming to members of society and at worst frightening. A more accurate analogy would be to consider the disease of leprosy.

Leprosy is a contagious disease caused by the organism mycobacterium leprae. It is still endemic in some areas of the world to this day and can causes severe dysfunction in those individuals unfortunate enough to have it. While it is more or less easily cured today by a multi antibacterial regimen, 100 years ago or so this was an incurable disease and the disgust and the revulsion that society felt towards those people who had this disease caused them to isolate them and in some cases like that of Hawaii to restrict them to live on an isolated island. The stigma attached to leprosy was based on the disgust and revulsion people felt over the disfiguring symptoms of the disease. The stigma attached to mental illness is based on the symptoms of bizarre behavior which cause alarm and fear.

No amount of education was going to change society’s outlook on lepers, and though we try mightily it is very difficult to change society’s mind over the way it feels about people with mental illness.

That is not to say that organizations who do great work trying to reduce stigma should not continue to do that work because I believe it does help to some degree. However, in the case of leprosy, the stigma attached to the disease was overcome by finding a cure for the disease. I believe that finding a cure for mental illness will be the ultimate way to deal with stigma. Because of that I applaud the efforts of everyone to raise money either from the government, private organizations, individuals, charities etc., but I believe that the brunt of the money raised from such efforts should be spent on finding a cure rather than trying to combat the stigma from the symptomatology of an as yet incurable disease; Mental Illness.

Dr. Goldstein’s remarks reminded me of a July 2013 column written by Linda Rosenburg, the president and CEO of the National Council For Behavioral Health that sparked much controversy. It was entitled:  Is Mental Health Stigma Overrated?  and contained this paragraph:

Is mental health stigma overrated? Is it time to rethink anti-stigma campaigns that are based on the belief that stigma stops people from accessing services?

I must admit that I’ve long questioned the use of anti-stigma campaigns — fearing they do little to help people with mental illness. They have however become an industry. How about we instead put the money into services? 

I wrote about the Goldsteins last December in a blog post entitled: Parents Spent 15 Years Trying Community Treatment, But It Took Long-Term Residential Care To Help Their Son

Dr. Goldstein can be reached at auee@cox.net

Laurie Goldstein can be reached at gold15@cox.net

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Frequently Asked Questions (FAQ’S) Secure Residential Treatment Facilities

Isn’t a secure residential treatment facility just a “mini” hospital?    No.  Secure residential treatment facilities are a new addition to the continuum of care, not a replacement or alternative to short term inpatient psychiatric hospitals like Desert Vista or a long-term facility like Arizona State Hospital (ASH).  

Secure residential treatment is intended to serve individuals who need around-the-clock, close supervision and support by staff with behavioral health training to ensure the individual takes prescribed medication and receives support services.  Individuals would be court-ordered but, also, screened by clinical staff before acceptance to exclude those with assaultive or significant self-harming behavior.  The reason the place needs to be secure is because the residents would leave if it was not.

Won’t a secure facility have to look and run like a “mini hospital”?   No.  Clinical screening of residents prior to acceptance into the program will permit a residential setting to be more like a home then a hospital setting, therapeutically beneficial for residents, and safe for staff and residents.

Patients having severe enough psychiatric symptoms that they are violent towards themselves or others do not belong in a secure residential facility and would not be accepted. These individuals need to be in a Level 1 hospital environment.  For example, violent patients can not have access to items that they can use to do harm. Furniture must be too heavy to throw; glass in the windows must be shatter-proof; fixtures must be anchored so they do not allow a person to hang himself; toilets must be made out of unbreakable materials, etc. These environmental modifications are costly, and the specifications are constantly updated so that they need to be replaced. In addition, safety requirements also affect the patient’s daily life and comfort.  Women are not able to wear a bra due to hanging risk; others cannot access computers or other items that are breakable and can be used to create sharp objects for use as a weapon or for self-harm.  Residential treatment facilities will not have these features because the residents accepted do not require these restrictions. 

Are you concerned about safety and potential violence in secure facilities?   Of course. However, a secure residential treatment facility can be safe for staff and residents in four ways:  (i) screening of admissions, (ii) an adequate number of trained staff, (iii) a safe physical environment, and (iv) appropriate policies for situations when a resident becomes upset and potentially assaultive or violent.

Getting people to be adherent with treatment is the first step to reducing violence.   We know that much of the violence by individuals diagnosed with SMI is by individuals who are not in treatment.   The clinical staff of the secured residential treatment facility must appropriately screen individuals referred for admission; a primary goals of screening is to determine if someone is too violent or at too high a risk of self-harm to be admitted or to remain.   To the extent that proposed residents have been off their medication for a period of time and are highly agitated or aggressive, they would need to be stabilized first in an acute care setting before being considered clinically appropriate for secured residential treatment; in addition, the facility would have criteria for admission which would screen out those who have a history of significant violence towards others even when taking prescribed medication for their psychiatric condition. 

Additionally, it is one thing to have someone who is verbally threatening but doesn’t act on it, or someone who does minor destructive things when angry (for example, tearing papers off a bulletin board or slamming doors).  Some individuals may engage in self-harm behavior like scratching.  All these behaviors are manageable in a residential level of care.  However, if the person’s behavior is so disturbed that he or she is engaging in serious assaults or self-harm, it is a mistake to try to manage the person in a setting not built or staffed to prevent significant property destruction, self- harm or harm to others.  This is why it is essential to have clear criteria for admission to a residential treatment facility.  It is also why such a facility will not take the place of psychiatric hospitals or Desert Vista or ASH (though it is likely that some patients who currently spend long periods in these hospitals could be appropriately treated in the less restrictive setting of a secured residential treatment program).   It also is possible that a patient could do well in the program for months and then have a deterioration, which would require hospitalization and a return to the program.

Will restraints be used?    No. Residential treatment facilities cannot use physical, mechanical, or chemical restraints. 

The only thing residential treatment facilities can use is an Emergency Safety Response, which involves subduing a physically aggressive person to protect staff and other residents from injury.   If a resident becomes physically aggressive towards others (staff or peers), and it is ongoing, police have to be called.  If the person is under Court Ordered Treatment, the court order can be amended to admit the individual to the hospital again.  If there is evidence of dangerousness to self or others, the police can immediately detain the resident and transport him or her to one of the local psychiatric crisis centers.  Any individual demonstrating significant aggressive behavior which poses an imminent risk of serious harm to others and is unresponsive to less restrictive interventions belongs in a higher level of care where restraints can be used safely to protect the patient and others.  

Will secure residential facilities have “security”?   Yes, of varying types consistent with licensure provisions.

These are intended to be residences – not prisons with barbed wire and bars.  The perimeter of the property has to be secure, just as are most schools today.  Electronic security can be used too — alarmed doors, a sequence of doors, motion detection and monitoring, etc.  Security staff may be available to assist everyone in staying safe.

How will someone be sent to a secure setting and how can they get out?  Similar to the way they do today. 

To be admitted to a secure facility will require that the proposed resident be receiving mental health treatment under a court order and that the judge specifically order secured residential treatment based on two important procedures: (i) the clinical team must provide an affidavit with evidence that this is the most appropriate and least restrictive placement, and (ii) program staff at the secured residential treatment facility, must accept the person based on the staff’s judgment that the facility is appropriate for the individual and can safely meet his/her needs and is appropriate for the person’s needs. Those admitted would need to be found by the judge to meet strict criteria indicating that they require treatment in a secured setting, based on prior failure to improve in intensive unsecured treatment settings due to non-adherence with treatment recommendations, or current evidence that the person would not comply with treatment in such a setting. After admission, there must be continual monitoring of the appropriateness for continued stay, with clear treatment goals and criteria for discharge to a lower level of care.   Providers and the individual, family, or guardian can petition the court at any time for discharge to a less restrictive level of care as they can do so today.   Providers also can petition the court at any time for transfer to a higher level of care.

Will individuals be subject to forced medication?  Only as part of a court-ordered treatment (COT) plan – just like today.

In Arizona, once a court has ordered treatment, medication can be given as part of the treatment plan developed by the treating psychiatrist and approved by the medical director of the treatment agency.  Only patients under COT, or those with a guardian consenting to treatment, can be required to take medication. We must rely on the judgment of the clinical team as to when and why to ask for COT. 

Will individuals have input into their treatment plan?   Of course, that is essential for self-guided, self-directed recovery.

The treatment team and the person will develop an individual treatment plan (ITP) just as they do today.  The goal is to achieve better participation in development of and adherence to the ITP by having somewhere stable for the person to live with 24-hour services and support.  The goal is to provide support and safety during the early stages of recovery in order to provide the best opportunity for success with a self-guided and self-directed recovery.

What happens if someone tries to escape, demands to leave, or leaves?  “Escape” is the wrong term.  This is not a jail or prison. It’s a residence for treatment.  Staff would try to persuade the resident to stay and, if unsuccessful, call mobile Crisis Services or the police and then take appropriate action.  Because all individuals will have a COT order indicating that they are required to reside at the facility for treatment, the alternative to leaving is a hospital setting.

The focus is always is on getting the resident clinically indicated and appropriate treatment and services. Every resident has the due process right to seek to move to a less restrictive level of care by working with the clinical team or by petitioning the court which issued the resident’s commitment order. 

 If a resident nonetheless demands to leave or evades the program’s security measures and is able to leave, staff could pursue an amendment for inpatient care, if justified, or a “pick-up” order.  This is the same process that is followed today. The facility files an “amendment” to the original court order, and the police pick up the person and bring him or her back to the facility. Repeated departures like this may indicate a need for a higher level of care.

What’s the difference in civil commitment to the State Hospital and commitment to a secure residential facility?

They are totally different types of facilities.  Our laws can accommodate both.  Secure residential facilities will add community beds in a far less restrictive setting than the State Hospital or our screening agencies like UPC, RIAZ or CBI, or our evaluation facilities, Desert Vista Hospital, the Behavioral Health Annex at Maricopa Medical Center, and Maryvale Hospital.

Secure treatment will fill a gap in the continuum of care and housing in order to prevent individuals with chronic SMI from falling through the cracks and ending up civilly committed in our State Hospital (for over a year, usually),  or worse — becoming incarcerated in jail and prison because of crimes, sometimes heinous ones like assault or murder, but more often nuisance crimes arising out of homelessness and poor judgment caused by active psychosis. Currently, due to a mandated cap on the census at the State Hospital, many patients are staying for months at an acute care psychiatric hospital which was not built for these long-term stays.

Can a family member, or guardian admit someone to the secure residential treatment facility?   No.  A court always is involved and must order someone committed. 

The family member and/or a guardian may be involved and give evidence.  But a doctor also is involved and must make the recommendation based on a clinical assessment.

Will a court order someone committed to a secure facility for a set period of timeYes, as currently happens for all court ordered treatment (COT). .

The COT time period is typically one year, but that is always subject to recommendations of the clinical team as required by Olmstead and due process rights. There must be periodic reviews and the ability to petition to be discharged.    We are comfortable with the concept of a secure residential treatment facility because of the all of the licensure rules and due process protections built into our system.

Will secure residential treatment facilities have to comply with fire codes? Of course. Secure residential facilities will be licensed and through that process must continually comply with all state, county, and local codes.  There are multiple kinds of health care and residential facilities that are secure, for example, assisted living facilities, nursing homes, dementia facilities, and therapeutic schools.

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FAQs ABOUT IMDs, OLMSTEAD, AND SECURE RESIDENTIAL TREATMENT FACILITIES

Does the IMD Exclusion apply to secure residential treatment facilities? 

          No.   The IMD exclusion, which is found in section 1905(a)(B) of the Social Security Act, applies to “institutions for mental diseases” with more than 16 beds and to individuals between ages 21-65.  The IMD exclusion was intended to ensure that states, not the federal government, be responsible for funding psychiatric services and substance use disorder residential treatment.  Secure residential treatment facilities will not be IMDs as they will have less than 16 beds.  

 How does Olmstead relate to the Secure Treatment?

The landmark Supreme Court decision,Olmstead v. LC, 527 U.S. 591 (1999), protects the civil rights of people with disabilities from being inappropriately institutionalized. Olmstead requires that individuals reside in the “most integrated” setting that the individual’s treatment professionals agree is clinically appropriate. Olmstead at 597.  ACMI envisions secure residential treatment facilities as providing a more integrated setting to hospitalization, jail, or prison for individuals who have not been successful in other community living arrangements. 

All individuals who are referred to and accepted in a secure residential treatment facility will have been committed by a Title 36 civil court.  And Arizona law is actually more protective than Olmstead because it mandates that individuals be provided services in the least restrictive placement: “The court shall order the least restrictive treatment alternative available.” See ARS 36-540.  Consistent with Olmstead, Title 36 also requires that a treatment professional to conclude that a less restrictive traditional community placement is not appropriate.

Does Olmstead forbid secure settings other than a psychiatric hospital?

No.Importantly, the Supreme Court explained that admission to any facility always depends, first, on the treating professionals’ assessment that the facility is appropriate for the individual either as an alternative to a more restrictive setting such as a hospital or a less restrictive setting such as housing in the community.  Olmstead at 597. 

Second, secure residential treatment facilities are the kind of option that the Supreme Court seemed to anticipate and encourage when it said that states “need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities …”  Olmstead at 597 (emphasis added).   Individuals with chronic serious mental illness face unique challenges and may benefit during their recovery from services delivered in a clinically appropriate, secure residential setting.  Such a setting is “more restrictive” than other community-based housing options, but “less restrictive” than inpatient care or incarceration.  It can offer an alternative to jail, prison, the state hospital, or life and death on the street.      

Will secure residential treatment facilities meet due process requirements. 

Yes.  Olmsteadrequires, first, that treatment professionals determine what is appropriate clinically for each person. Second, all due process protections apply as to who may be admitted and why. No person will be admitted to a secure residential treatment facility except under a court-order.  The court order must be based on and follow an assessment and recommendation by an individual’s treatment professionals that (i) the secure facility is the most integrated setting appropriate for the individual’s clinical needs, and (ii) the individual likely cannot succeed in a less restrictive community placement.  Individuals considered for admission generally will have been unsuccessful in other types of housing and treatment settings.   Third, there will be periodic review of appropriateness of continued stay and criteria for discharge and the ability at any time to petition for discharge.  Fourth, there must be ongoing, periodic reviews about whether transfer to a less restrictive setting is clinically appropriate.  The individual can petition for discharge at any time.

Will secure residential treatment facilities provide comprehensive services?

          Yes.  Olmstead requires that states offer services, programs, and activities in the most integrated setting appropriate to the clinical needs of the individual.    Secure facilities can provide all needed services and support, including the full range of clinical and therapeutic services and peer support consistent with an individualized treatment program.  Personal choice and independent living skills will be promoted consistent with maintenance of a therapeutic and safe environment for all residents.  There will be a full range of recreational and educational opportunities.  All residents will have ongoing contact with an assigned outpatient clinical team who will follow the individual after discharge to a lower level of care.  In short, secure residential treatment facilities can be the most integrated and most appropriate setting for people who are struggling in their recovery journey in other outpatient settings.

This post was edited 8/6/2019 to ensure that you have the most up to date information!

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What is a Lighthouse Model Community Home?

Lighthouse Model community homes are a form of long-term housing for people with serious mental illness (SMI). They are located in safe neighborhoods and run smoothly and efficiently resulting in a good relationship with the neighbors. The program is centered around the needs of the individual rather than a program (one program fits all).

They are distinguishable from other forms of housing by their capacity to respond to SMI symptoms without threats of evictions for behaviors that are related to their illness. Other housing programs, even those designed to aid individuals with SMI, may evict a member on the grounds of substance abuse, unpredictable behavior due to their mental illness, disregard for program schedules and/or other violations of rules. Due to their serious mental illness, these individuals are more likely to be hospitalized, evicted to the streets and/or incarcerated. The lighthouse model approach is person centered not program centered. Staff recognize behaviors that are symptomatic of SMI and assist the individual to manage their symptoms while retaining their housing.  Staff are available 24 hours a day with on-site behavioral technicians who are trained to respond to behaviors associated with SMI symptoms and who make an effort to de-escalate any situation that occurs. Their whole goal is to help the person remain successfully in the community in order to develop a real and meaningful life. If, for example, a person has to be taken to the hospital, or if they end up in jail due to behaviors related to their mental illness that were determined uncontrollable in the current setting, the member will retain his or her place in the Lighthouse when they return. Members all sign individual leases and pay 30% of their income. There is not a time limit on the length of lease and occupancy.

Advocates of the Lighthouse community home model believe that:

  1. This is an efficient cost-effective program that provides the support and safety that enables people to be permanently housed many of whom would otherwise  become homeless or repeatedly cycle through other housing programs, hospitalizations and incarcerations.
  2. The traditional short-term traditional housing model is insufficient for the chronically mentally ill (a small subset of the SMI population that have not achieved recovery and have failed to demonstrate the ability to successfully live independently.
  3. For these individuals there is currently no other form of suitable housing available that meets their needs to successfully live in the community.

Characteristics of the target population for Lighthouse Model housing:

  1. All referrals should have serious mental illness too severe to live with family or friends.
  2. Failed multiple attempts at living independently.
  3. May have been unsuccessful at other programs and housing settings.
  4. Have had many contacts with fire paramedics, police and the judicial system.
  5. They also may suffer from addiction which often is grounds for eviction from other programs.
  6. The target population may improve under supervised treatment, but often relapse when released too soon to have benefited from a supportive and therapeutic environment.

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Why An Organization Focused on the Chronically mentally Ill?

Today over 200,000 Arizonans live with serious mental illness (SMI); more than 13 million individuals nationwide. Most are adequately served by our statewide Medicaid system commonly known as AHCCCS (Arizona Health Care Cost Containment System). But, many of those with the most serious mental illnesses live on our streets and in and out of our jails and prisons, primarily because of a lack of appropriate housing. They’re not safe, they lead lives filled with misery, fear, and danger because our current system is not able to meet their special housing needs.

The Association for the Chronically Mentally Ill (ACMI), a non-profit organization, was founded by a group of passionate parents whose adult children shared a similar experience with Arizona’s behavioral health system. The families of ACMI are working hard so that future families will not have to endure the multiple and unnecessary hospitalizations, incarcerations and homelessness that their sons and daughters have experienced. People with serious mental illness prematurely die 25-30 years earlier than the average person without serious mental illness. Indeed, the purpose of ACMI is to not only shine a light on this reality, but to advocate and work with our State’s leaders in health care, public safety, and government to implement practical solutions that are both compassionate and effective for our chronically and seriously mentally ill population.  ​

How Can You Help?
You can help by continuing to engage with our communications, share about this work, and partner with ACMI financially. The vision is to improve the well-being of the Chronically Seriously Mentally Ill population through filling the gaps in the current continuum of care with:

  • More “Lighthouse-like community living” homes.
  • Secure Treatment Facilities. 

We will work with all persons and organizations who share our deep concern for the well-being of this population. Please join us as we seek to ensure that the most vulnerable mentally ill can achieve a life with dignity!