Photo by Issac Geesling

Weekend Legislative Roundup.

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.

Action: Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

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.

Action: Call and/or email the House Appropriations Committee members (emails below) and ask them to support.  Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

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.

Action: Call and/or email the House Appropriations Committee members (emails below) and ask them to support. Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

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.

Action: Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

Here is a link to find AZ Representative’s email:

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

SB1786 – Prisoner Mental Health Transition Bill.

Status: Passed in the Senate. Passed in the House Committees, waiting to go to the House floor for a vote.

Action: Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

SCR1018 – A Concurrent Resolution expresses support for community-based efforts to provide clinically appropriate care to individuals with chronic serious mental illness.

Status: Passed in the Senate. Passed in the House Committees, waiting to go to the House floor for a vote.

Action: Call and/or email your AZ Representatives. Email the Governor’s office and ask for his support.

Here is a link to find AZ Representative’s email:

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

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.

Here is a link to find their email:

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

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

House Appropriations Committee members:

César Chávez                     cchavez@azleg.gov

Regina E. Cobb                 rcobb@azleg.gov

Charlene R. Fernandez     cfernandez@azleg.gov

Randall Friese                    rfriese@azleg.gov

Jake Hoffman                    jhffman@azleg.gov

Steve Kaiser                       skaiser@azleg.gov

John Kavanagh                  jkavanagh@azleg.gov

Aaron Lieberman             alieberman@azleg.gov

Quang H. Nguyen             qnguyen@azleg.gov

Becky A. Nutt                     bnutt@azleg.gov

Joanne Osborne               josborne@azleg.gov

Judy Schwiebert               jschwiebert@azleg.gov

Michelle Udall                   mudall@azleg.gov

 

Your partnership in helping the chronically mentally ill and their families in our state is so appreciated, thank you!

Thank you,

 ACMI Board

Photo Sky Schaudt/KJZZ
The entrance of the Arizona State Hospital in Phoenix.

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.

Respectfully,

_______________

House of Representatives, Health and Human Services Committee members contact information:

Joanne Osborne, Chairman                 JOsborne@azleg.gov                      (602) 926-3181

Regina E. Cobb, Vice-Chairman           RCobb@azleg.gov                           (602) 926-3126

Kelli Butler                                             KButler@azleg.gov                          (602) 926-5156

Joseph Chaplik                                     JChaplik@azleg.gov                        (602) 926-3436

Randall Friese                                       RFriese@azleg.gov                          (602) 926-3138

Alma Hernandez                                  AHernandez@azleg.gov                  (602) 926-3136

Jacqueline Parker                                 JParker@azleg.gov                           (602) 926-3375

Amish Shah                                           AShah@azleg.gov                            (602) 926-3280

Justin Wilmeth                                      JWilmeth@azleg.gov                      (602) 926-5044

Again, SB1716 is slated to be heard in the House HHS Committee on Monday, 3/22.

Please contact the HHS members by 10 am Monday morning.

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

Your partnership in helping the chronically mentally ill and their families in our state is so appreciated, thank you!

ACMI Board

 Courtesy of Unsplash photography

   Every parent’s worst nightmare is the thought of possibly losing a child in an accident or to a serious illness. An even greater fear is the thought of losing a child to an abduction and never knowing where that child is or who the child is with. Moreover, no parent wants to see their child abused or to be an abuser.

     I have lost a child……. to a serious mental illness and addictions.

     I have lost a child to multiple “accidents” in the current mental health system in which I have tried to participate. I go to bed every night not knowing where my child is or who she is with. I face each new day with the fear that she did not survive the night. Every day I brainstorm and research what else I might do to find her and get her to a hospital where she can be helped. Occasionally, I get a call from a police officer who has had an encounter with her, usually for trespassing or loitering.  The call is a result of recent missing persons’ report that I filed. I am told that she is “okay” by the officer, even if she is demonstrating psychotic behavior, dressed in appropriately for the weather, calling 911 because she believes that she has been run over by a truck, or staying in settings where assaults are frequent.

     Because she has not been given proper care and limits are placed on those of us (family, primarily) who are trying to help her, the results are as follows:  multiple arrests, jail time, cruel solitary confinement, car accidents, fines, court hearings, emergency calls to police and fire departments, hospitalizations for both physical and psychiatric treatment, rehabs, halfway houses, domestic violence calls, petitions, court ordered appointments at clinics, dental repairs from assaults, disease, property damage, job losses, and loss of all meaningful relationships of friends and family.

     My “child” is an adult who is persistently and acutely disabled due to mental illness and addictions.  I am told over and over by physicians, law enforcement officers, counselors and friends, “She is an adult. You can’t force her to get help.” “She has to hit bottom first.” “We can’t tell you if she has been admitted.” “She can be talking to a light pole, but unless she has threatened to harm herself or others, we cannot admit her.” “Since she is already under court ordered treatment, you cannot petition her for pick-up. She has been evaluated already. She just needs to show up for her meds at her assigned clinic.” These comments demonstrate the lack of understanding when it comes to mental health and addiction issues. People who are not thinking clearly cannot make decisions in their best interest. Their brain is lying to them and sending a false narrative. Hitting bottom often means death. What good is court ordered treatment, if once you get it you cannot be evaluated again should you have a setback in your mental stability! Most severely mentally ill people have a very difficult time managing their own medications and even getting to all of the appointments without assistance.

     Based upon calls from the police, my daughter is most likely living in a box on the streets of Phoenix and has been there at least 10 months.  Previous to her leaving my home, she had lived with me for a year. It was one of the nicest years we had spent with her. She had developed a few close friends, interacted with family again, paid off most of her fines, obtained a job, bought a car, traveled with us, and went to all of her appointments at the court appointed clinic.

     There were two things that I think made the most difference in our daughter’s progress: parental involvement and a longer stay at the mental health hospital initially. Obtaining a lawyer and gaining temporary guardianship was the first step in being able to be more involved in her care. Additionally, the longer stay at the psychiatric hospital allowed her to be evaluated thoroughly, stabilized, and prescribed the correct medication. It was amazing to see the difference in how she interacted with us and life in general following her hospital stay. Previous stays in the hospital had been so short (3-7 days) resulting in her return to the streets.

     What failed? Why are we back where we started over a year ago? I believe when a medication change took place through her clinic there was a set-back in her mental health at that time and her desire for meth increased. We (her legal guardians) once again admitted her to UPC due to psychotic behavior. She was then sent to a different hospital and there they changed her medication again rather than prescribe what she had previously taken successfully a year before. I believe if she had gone back to the same hospital and seen the same doctor, she would be in a different place now. Long term care offers a chance to stabilize and seeing the same doctor offers consistency in care. The out-patient clinics primarily serve as dispensaries of meds, not in-depth evaluation and continued care.  When we sought to renew guardianship, this process was dead on arrival because our paperwork had to be completed by a psychiatrist. All of her appointments at her court ordered clinic had been with the equivalent of a PA.

      We must increase the number of secure, mental health hospitals. Current numbers are grossly inadequate. The length of hospital stays must increase for the seriously mentally ill allowing time for proper evaluation, stabilization, medication, and a proper post hospital plan.   We need supervised housing for the SMI once released from the hospital as a protection for the patient, family and the general public. Currently, many SMI patients find housing in drug rehab settings which are not set up for the SMI population. Others return to the street or with family who are not always equipped to provide adequate supervision and support.

     For change to take place, we must not view mental illness/addictions any differently than we do someone with dementia, Alzheimer’s disease, autism, or delayed mental functions. We make sure that they are in a safe environment and decisions are made with their best interest at heart. The SMI are being neglected and not receiving the help they so desperately need. Just walk around downtown Phoenix to see how many of the SMI are living. We take care of stray dogs better than these precious human beings.

     I hope our daughter can soon get the help she needs before it is too late. We have lived the nightmare and I have only shared a brief summary of this past year, not the previous twenty years.

Anonymous Parent (in order to protect my daughter’s privacy)

 

These are the families that ACMI advocate for. They are the most vulnerable.

Thank you for attending our online webinars; if you missed it, you could find the webinar and slides on our website. You will need to create a free account to view the webinars and downloads.

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

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

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Thank you for attending our online webinars; if you missed it, you could find the webinar and slides on our website. You will need to create a free account to view the webinars and downloads.

What Psychiatrists Do To Conduct An Assessment and Make a Diagnosis in a Hospital or Urgent Care Setting?

Learn from the expert psychiatrist, Dr. Carol Olson, about Behavioral Health Assessments.

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Crisis Evaluation
Psychiatric evaluation and diagnosis

Upcoming online seminar:

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

March 10, 2021, 6-7 PM (MST)

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

Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/tZclc-ysqTgvG9Cwq6lcdfpq8mLIl7mLxzvP

After registering, you will receive a confirmation email containing information about joining the meeting.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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    Here are my thoughts about the IMS exclusion and appropriate treatment of people with serious mental illness.  We need all the levels of care available in the continuum of care. Today in-patient care is significantly limited due to this archaic Medicaid rule.

     In today’s blog from Pete Earley, he refers to a report by Steven Eida, a senior fellow at the Manhattan Institute and editor of City Journal, and Carolyn Gorman, a policy analyst on issues related to serious mental illness who has served as a board member of Mental Illness Policy Org., a nonprofit founded by the late DJ Jaffe.

     The Association for the Chronically Mentally Ill (ACMI) has championed the rights of the chronically mentally ill for more than three years.  Our focus has been on creating appropriate housing for people with chronic mental illness, in other words, those people with serious mental illness who are not adherent to the current treatments and policies available to them under our Arizona behavioral health system. This year, we made efforts to reform our state psychiatric hospital, the Arizona State Hospital (ASH). This article is directly on point and aligns perfectly with our goals in trying to make people realize that this group of non-adherent SMI, who we choose to call the chronically mentally ill, are not well served by relegating them to the usual treatments available in the community, but, instead, frequently need longer-term treatment in level 1 psychiatric hospitals.

    Also, after stability, when released to the community, they need more intensive supervision in order to treat their chronic psychiatric illness and have meaningful lives.

    In addition, an upcoming study by the Morrison Institute, sponsored by ACMI, found that there were significant savings to the behavioral health system because of the decreased costs that resulted when this notch group of seriously mentally ill, the chronically mentally ill, are treated appropriately, safely, and humanely.

Charles Goldstein, MD

Pete Earley’s original article

Will Eliminating Old Rule Return “Snake pit” Hospitals Or Help Seriously Mentally Ill Americans Get Much Needed Long Term Care?

Photo by Elina Krima from Pexels

(2-26-21) A conservative think tank has joined a growing national chorus calling for an end of a federal rule that discourages states from building psychiatric hospitals and providing long-term, in-patient care for the seriously mentally ill.

The Manhattan Institute argues in a new report released this week that the Medicaid’s IMD Exclusion rule has outlived its usefulness and should be repealed.

President Trump’s President’s Commission on Law Enforcement and Administration of Justice and the Interdepartmental Serious Mental Illness Coordinating Committee created by the Obama Administration also have called for dropping the rule.

What is the IMD Exclusion and why should you care?

It’s a rule that has been around since 1965 that discourages states from building and supporting large psychiatric hospitals and pushes them instead to provide community based treatment. The so-called “16 bed rule” accomplishes this by denying states Medicaid reimbursement for adults between the ages of 22-to-64 if they are treated in psychiatric hospitals and other facilities which have more than 16 beds. States must pay 100 percent of the cost of care for the seriously ill in most long-term psychiatric hospitals, compared to 50 percent for those treated in the community.

The new report’s authors, Stephen Eide and Carolyn D. Gorman, provide a thoughtful argument in favor of dumping the rule.

They document how difficult it is for parents and others to find hospital beds when someone is in the midst of a psychiatric crisis. It is not unusual for individuals to be turned away from emergency rooms or “boarded” in them for several days waiting for a hospital bed to become available. The lack of treatment beds also leads to individuals, who can’t get help, being arrested. The authors argue that Americans with serious mental illnesses simply can’t always get the long term help that they need in a community setting.

The 16 bed rule was enacted, in part, to put an end to warehousing patients in huge state hospitals, and those who support keeping it fear that state hospitals, once again, will become giant “snake pits” if the rule is repealed.

The authors of the Manhattan Institute report disagree.

They claim safeguards are in place now that weren’t years ago. Patients must be considered a danger to themselves or others before being held against their will in a state hospital. Many more treatment programs are available now than when state hospitals were the only choice. Federal laws, especially the Supreme Court’s Olmstead ruling, which requires individuals with mental illnesses be held in the least restrictive settings, will insure patients aren’t abused and forgotten in state hospitals. Plus, every state has a Protection and Advocacy Agency, specifically designed to investigate complaints about abuse in state hospitals and other long term facilities.

Modern psychiatric hospitals “are not designed as isolation wards” and “policies on seclusion and restraint are drastically changed” from the old days, the author’s wrote.

Opponents to dropping the rule warn that having Medicaid reimburse states for long term care in larger hospitals will blow up the Medicaid budget, costing as much as $1 trillion. They argue that states would reduce their spending on community care funding if given a choice between community programs and state hospitals.

The authors of the Manhattan Institute report argue the costs would be $5.4 billion spread over a ten year period and there would be no incentive for states to reduce spending on community programs.

Republicans attempted to eliminate the IMD Exclusion when former Rep. Tim Murphy (R-Pa) drafted the Helping Families In Mental Health Crisis Act. (Murphy was credited as an adviser to the Manhattan Institute Report.) But consumer groups, such as Mental Health America, and Disability Rights advocates strongly opposed ending the rule and Democrats successfully blocked Murphy’s language when his bill was incorporated into the 21st Century Cures Act in 2016.

Channeling the late D. J. Jaffe, who was a contributor at the Manhattan Institute, the authors argue that community based mental health services simply fail to help the seriously mentally ill who need long-term care to recover. Community services are failing this group, they argue, partly because of where they are directing their resources and efforts.

“As the number of diagnoses has expanded – and the number of Americans diagnosed at some point in their lifetimes with a mental disorder has increased – the number of claimants on public mental health resources has increased.”

In other words, what Dr. E. Fuller Torrey warned decades ago remains true.

We prefer to spend limited tax dollars and devote time to helping the “worried well” rather than those who need treatment the most.

You can read the full Manhattan Institute report here.

(Do you believe the IMD Exclusion should be dropped? Have you had trouble securing a hospital bed for someone in crisis? Would ending it hurt community services and turn back the clock to “snake pit” hospitals? Let me know your thoughts on my Facebook page.)

About the report’s authors:

Stephen Eide is a senior fellow at the Manhattan Institute and contributing editor of City Journal. He researches state and local finance and social policy questions such as homelessness and mental illness. He has written for many publications, including National Review, New York Daily News, New York Post, New York Times, Politico, and Wall Street Journal. He was previously a senior research associate at the Worcester Regional Research Bureau. Eide holds a B.A. from St. John’s College in Santa Fe, New Mexico, and a Ph.D. in political philosophy from Boston College.

Carolyn D. Gorman is a policy analyst on issues related to serious mental illness and has served as a board member of Mental Illness Policy Org., a nonprofit founded by the late DJ Jaffe. She was a senior project manager at the Manhattan Institute for mental illness policy and education policy. Gorman served on the U.S. Senate Committee on Health, Education, Labor and Pensions. Her writing has appeared in the Wall Street Journal, New York Daily News, New York Post, City Journal, National Review, and The Hill. Gorman holds a B.A. in psychology from Binghamton University and will graduate with an M.S. in public policy from the Robert F. Wagner Graduate School of Public Service at New York University in 2021. Twitter: @CarolynGorm

From the report:

Medicaid’s IMD Exclusion was crafted for an entirely different era. During the last half-century, America built a system of community-based mental health services that did not exist in 1965. Income-support programs for the disabled, assertive community treatment, clubhouse programs, supportive housing, assisted outpatient treatment, supported employment, peer support services—these either did not exist in the 1950s, or they operated on a much smaller scale than now. Nevertheless, a small subset of severely mentally ill individuals still needs inpatient treatment on a short-term, intermediate-term, and long-term basis. The IMD Exclusion inhibits those individuals’ access to medically appropriate care. ..

ACMI upcoming webinar:

Come learn from Dr. Carol Olson M.D., DFAPA, Chair, Psychiatry Department, Valleywise Health System

Date: February 24th, 6-7 PM MST

Time: 18:00-19:00

Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/tZYvce-vpzMrHNKGqmIK-Hdoe5WHOEwi9wDW

After registering, you will receive a confirmation email containing information about joining the meeting.

Certificate of attendance by Copa Health available.

Crisis Evaluation
Psychiatric evaluation and diagnosis

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Crisis in Mental Illness

Photo by an ESB professional- Shutterstock

  Families experiencing a crisis with their loved ones often reach out for help from other families that have been through a similar experience.  Guiding a family with a loved one with serious mental illness with active psychosis is scary, especially if the psychotic break is sudden.  At the Association for the Chronically Mentally Ill (ACMI), we feel compelled to inform families that they may be in danger. While most people with mental illness are victims of crime, untreated or undertreated, they can also pose a danger to themselves and others. Stories like that of Senator Creigh Deeds, who was attacked by his son after a short stay in an emergency room because there were no psychiatric facilities that could admit him at the time are not infrequent.  The facility released him to Sen Deeds’ care, and the next morning his son attacked him before killing himself. There have been many similar stories across the United States.  When reading stories as described below, it prompts one to think about how we got to this point. Below is an account of what Joseph Bowers was experiencing during his psychotic period; fortunately, his grandmother was not harmed. When will our behavioral health system realize that the lack of psychiatric beds and inadequate short term inpatient treatment does not help but contributes to this issue? We must advocate for appropriate treatment and prevent needless tragedies.

ACMI Board

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Guest Blog – Saved from Committing a Psychotic

Murder

Original Blog Schizophrenia | Mind You (wordpress.com)

December 18, 2020Schizophrenia 

By Joseph Bowers

There was no one in this world I loved more than grandma when in my right mind so why did I try to kill her? By the time I turned 17 in 1964, I had become totally absorbed by psychotic delusional fantasies. I was living with my grandmother and she and my grandfather, who had died about ten months earlier, had raised me from the age of two. Also living with us was my Uncle Fred who was not home much.

One evening shortly after my birthday, my brain became convinced that the devil had replaced my grandmother’s soul from her body with his own. He was doing this waiting for an opportunity to kill me. I don’t remember exactly who I believed I was: God or Jesus, a critical figure for good in the ongoing battle of good versus evil in any case.

Alarmed as I was, my brain saw this as a great opportunity. I could kill my grandmother’s body whereupon the devil’s soul would be forced to vacate. At that point, my spirit friends would capture him and imprison him eternally. Without his leadership, the forces of evil would crumble and the battle of good versus evil would be over once and for all with good triumphant. I probably had a plan for restoring my grandmother’s body and reuniting body and soul. We would all live in peace happily ever after.

Just after grandma went upstairs to bed that night, I took a single shot 16-gauge shotgun out of a closet, loaded it and started up the stairs toward her bedroom. As I reached the top of the stairs, looking in through her open bedroom door, I saw her kneeling by her bed praying.

Confused, I hurried on down the hallway out of her line of sight. What was the devil doing kneeling in prayer? Surely, he had somehow become aware of what I was up to and was trying to fool me into thinking this was just my dear grandmother after all.

Taking a deep breath. I went back down the hallway and entered her room. As she turned to me, I pressed the barrel of the shotgun against her chest and pulled the hammer back cocking the gun. At this point she reached out to me touching my arm and pleaded, “Joe don’t! You’ve never been mean to me!”

Time seemed to stand still as I wrestled with my dilemma. Do I pull the trigger or not?

I pointed the gun to the floor. With my thumb on the hammer, I pulled the trigger letting the hammer down gently harmlessly. Breaking the breach, I unloaded the gun, and we went downstairs to wait for Uncle Fred to come home.

Nearly sixty years later, I still wonder what saved my grandmother that night. Was It the uncertainty caused by finding her in prayer? Did her reaching out and beseeching me somewhat reestablish our relationship and make it harder to believe her to be the devil? Did I have one of those brief lucid moments that sometimes come in the midst of psychosis? I just don’t know, but I’m thankful whatever it was.

That night they took me to Middletown State Mental Hospital in lower New York State where I would stay for more than two months being treated for what they diagnosed as paranoid schizophrenia.

At the hospital I received the best science-based treatment available in 1964. My family never got a bill. The state of New York paid for it. I was able to leave the hospital after about two and a half months reasonably stable. As a teenage boy from rural upstate New York and a family of limited financial resources, I didn’t realize how lucky I was to get this kind of treatment.

There would be more than twenty years of struggling with recuring psychotic episodes. There would be more hospitalizations and a couple arrests.

In time I was put on a medication that proved very effective without serious side effects, I’ve developed a solid support system of professionals, family and friends and I have learned effective coping skills. Working with a professional, my wife and I learned signs of impending illness which would alert us to take preventative action. I haven’t had a serious episode in more than thirty years now and have overall lived a reasonably normal and successful life.

Never on any sort of disability insurance, I have held down many jobs. For two years I fought forest fires on a hotshot crew for the U.S.D.A. Forest Service, worked as a roughneck on oil rigs and retired from twenty-nine years helping produce low-cost electricity at a large power plant.  I’ve earned a B.S. degree from a major university and had a successful marriage. My wife and I have three grown children all healthy, doing well and contributing to society.

I am truly one of the lucky ones.

With the changes I’ve seen in mental health care in my lifetime, I can just imagine how things might go in this day and age. A teenage boy from the country and poorer parents developing serious mental illness would face a different scenario than what befell me in 1964.

If he got a hospital bed at all, he would almost certainly be released way too soon and get little of the needed support on the outside. It’s not hard to imagine a life of homelessness on the streets in and out of jails and prisons. This happens all too often.

The big paradox for me is that even as our ability to treat serious mental illness has increased a great deal in my lifetime, the likelihood that people will get the treatment that is available is much less.

Joseph Bowers now lives in Colorado

 

 

 

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

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

Charles Goldstein, MD

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

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

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

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

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

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

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

ACMI Board

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