Photo by Ian Schneider Unsplash

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

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

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

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

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

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

But we need YOUR help NOW!

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

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

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

UPDATE:

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

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

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

Please join us to learn about the “Mapping the Costs of Serious Mental Illness” which was a two-year study commissioned by ACMI to determine various costs associated with serious mental illness. There will be a presentation followed by a Q & A session.

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Photo by Louis Reed on Unsplash

     Studies into the dangerous long-term effects of repeated psychosis should underscore the need for early and continued treatment for persons with psychotic disorders. We do understand that long-acting injectable anti-psychotic medications (LAIs) are expensive; however, one episode of psychosis necessitating an inpatient stay will far exceed the cost of LAI treatment. And, yet, despite this knowledge, insurers insist on step therapy. Let us share our experience with our insurer’s denial for our son’s long-acting injectable medication after he had failed at oral medication for a decade and subsequently been stable on an LAI.

     Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are likely to be homeless, unemployed, or living in poverty. Life expectancy for patients with schizophrenia is 25 years below the average lifespan. Furthermore, patients with schizophrenia experience numerous comorbidities; weight gain, increased cardiovascular risk, and mood and cognition deterioration. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to reduced Quality of Life (QOL) and increased economic burden.

Here is an Op-Ed from the Arizona Republic on April 23rd on our experience:

https://www.azcentral.com/story/opinion/op-ed/2021/04/23/step-therapy-dangerous-patients-like-my-son-reform/7279231002/

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YOU did it!

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

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

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

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

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

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

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

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

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

Patient safety improvement:

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

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

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

Dear Representative _______,

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

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

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

Respectfully,

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

 

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

Thank you,

ACMI Board

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.

https://acmionline.com/downloads/

https://acmionline.com/webinars/

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.

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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. ..