Rockland Psychiatric Hospital
Rockland Psychiatric Hospital- photo by Stephen Speranza for The New York Times

An excellent comprehensive report on Medicaid’s Institute for Mental Diseases (IMD) exclusion law.

This article was published on February 22nd, 2021, here is a link to the full article on their site.

Here is the executive summary, taken from their full report (Eide & Gorman, 2021):


Executive Summary

Inpatient psychiatric care forms a crucial part of America’s mental health system. Though most mental health services are provided on an outpatient basis, treating some serious mental illnesses requires a hospital setting. Inpatient treatment may be provided in a general hospital unit or a specialized psychiatric hospital. Within the context of Medicaid, specialized psychiatric hospitals are known as “Institutions for Mental Diseases,” or IMDs.

Federal law generally prohibits IMDs from billing Medicaid for care given to adults between the ages of 21 and 64 at a facility with more than 16 beds. This “IMD Exclusion” has been in place, in some fashion, since Medicaid was enacted in 1965. The intent was to prevent states from transferring their mental health costs to the federal government and to encourage investments in community services. The IMD Exclusion achieved its desired effect by contributing heavily to what’s popularly called “deinstitutionalization,” the transformation of public mental health care from an inpatient-oriented to an outpatient-oriented system.

This report argues that the IMD Exclusion has outlived its usefulness and should be repealed. It discourages states from investing in inpatient care, hampering access to a necessary form of treatment for some seriously mentally ill individuals. As a result, these individuals end up repeatedly in the emergency departments of general hospitals, “boarded” for lack of access to available beds, and overrepresented among the homeless and incarcerated populations. More broadly, the exclusion discriminates, through fiscal policy, against the seriously mentally ill.

Concerns that repealing the IMD Exclusion would lead to a mass re-institutionalization of the mentally ill are overblown. The population of public psychiatric hospitals today stands at about 5% of what it was before deinstitutionalization. Individuals in need of mental health care have access to a much greater diversity of programs and public services than existed before the 1960s, when institutional care was often the sole option. Strong legal regulations also now exist that did not exist when Medicaid was first passed—most notably, the “integration mandate” of the Supreme Court’s Olmstead ruling, which requires mentally ill individuals to be provided services in the community when those services are appropriate, are not of objection to patients, and can be reasonably
accommodated.

Interest in repealing the IMD Exclusion has increased recently in response to a concern over bed shortages for the seriously mentally ill and persistent challenges with mental illness-related homelessness and incarceration. There have also been signs of bipartisan interest in a full and clear repeal. Under the Biden administration, mental health-care reform, beginning with the repeal of the IMD Exclusion, may present an opportunity for substantive bipartisan policy reform.

Eide, S., & Gorman, C. D. (2021). (rep.). Medicaid’s IMD Exclusion: The Case for Repeal (pp. 4–10). New York, NY.

This article was published on February 22nd, 2021, here is a link to the full article on their site:

Click to access medicaids-imd-exclusion-case-repeal-SE.pdf

Worth reading: Attorneys, and ACMI Board members, Josh Mozell and Holly Gieszl wrote an in-depth piece about Arizona’s mental illness treatment system in this award-winning magazine. They focus on the 55 bed limit for Maricopa County at the Arizona State Hospital (ASH).  They discuss the community treatment and the true interpretation of Olmstead. *Begins page 40. #mentalhealth #mentalillness #Arizona

On page 80 is an interview with the infamous Chic Arnold. Well done!

Arizona Attorney – September 2021 – Special Focus on Mental Health Law

Arizona Attorney Magazine
Arizona Attorney – September 2021 – Special Focus on Mental Health Law

ARIZONA ATTORNEY MAGAZINE is the award-winning monthly publication of the State Bar of Arizona – providing a window into Arizona’s legal community with a global viewpoint.

Most folks reading our blog know the long disturbing history of how we have gotten to such a sad place in the US in our treatment of people with serious mental illnesses. You may find it interesting, as I did, to learn that President Reagan made a major change (see below), which resulted in diminished community resources.

“That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.”

We need a federal plan that also involves the removal of the IMD exclusion. This mental health treatment exclusion is a parity violation. There is no such restriction on the length of stay or the number of medical beds in hospitals for medical conditions. Learn more about parity laws.

We need to focus on the people with SMI and not just general mental health!!

ACMI Board

Original article published by StatNews  on July 9th by Allen Frances

Original article

the Brain
Image by Adobe

President Biden’s ambitious infrastructure plan has a glaring omission: It makes no effort to redress the awful reality that the United States has the worst mental health infrastructure of any country in the developed world.

People with mental illness, their families, and society at large are suffering the tragic consequences of four decades of mental health defunding and privatization: 90% of psychiatric beds have been closed; the once-wonderful system of publicly funded community mental health centers has been gutted; crisis response teams are almost nonexistent; and the available pool of affordable housing meets only a fraction of what’s needed.

In the Middle Ages, people with severe mental illness were often chained in prisons, begged on the street, or languished in poor houses. In modern America, 350,000 people with mental illness are in jails or prisons (often for nuisance crimes that could easily have been avoided had treatment been available); 250,000 of them are homeless; and the average life span of those with severe mental illness is 20 years less than that of the general population. The rate of dying from Covid-19 was three time higher among people with schizophrenia than in the general community — the second biggest risk factor after age.

Law enforcement officers, sheriffs, and judges have become the most vocal critics of the brutal criminalization of mental illness and are now among the strongest advocates for improved community treatment and housing. Forcing scared and untrained police officers to be first responders for people with untreated mental illness puts them in untenable positions and is partly responsible for police brutality and shootings. People with untreated mental illness are 16 times more likely to die during a police encounter than other civilians.

And once in jail, people with mental health issues are difficult to manage, deteriorate further, spend disproportionate time in solitary confinement, and have prolonged stays (especially since they have no place to go and no treatment if released).

How did the U.S. get into this mess? Massive and rapid deinstitutionalization of people with mental health issues began in the late 1950s for several reasons: partly because effective antipsychotics had been discovered; partly as a humanitarian response to the horrors of the overcrowded “snake pit” state psychiatric hospitals; partly as a cost-cutting method (since mental health was often the biggest and most tempting item in state budgets).

The “new approach to mental illness” that President John F. Kennedy called for in a 1963 speech, which resulted in his signing into law the Community Mental Health Centers Act later that year, was a response to the great disruption caused by the rapid closure of the huge state hospitals. Community services were meant to provide a better life for people with mental illness at less cost to the states.

My first job working in a community mental health center in 1973 in New York City was thrilling. Patients who had languished for decades in state hospitals were able to enjoy much more normal lives with the benefits of medication and inclusion in the community. The U.S. became the world leader in community psychiatry and I was proud to be a psychiatrist.

That began to change shortly after Ronald Regan was elected president in 1980. He ended earmarking of federal funds for this system of community mental health centers and instead substituted block grants to the states that they could use at their discretion. Almost all the states acted badly, cutting taxes rather than using the federal funding as before for community mental health.

And the money saved by closing the expensive state psychiatric hospitals rarely followed patients into their communities to provide badly needed treatment and housing. Community mental services either closed or were privatized, and the newly private services routinely refused care to people with severe mental illness because they were usually uninsured and always very expensive to treat.

Eventually, deinstitutionalization turned into reinstitutionalization as prisons replaced hospitals as the biggest line item in state budgets. Under Reagan, the U.S. quickly went from having the best system of community psychiatric care in the world to the worst, and things have further deteriorated ever since.

It is not clear how much of Biden’s extensive physical and human infrastructure rebuilding plan will eventually be enacted into law. But it is crystal clear that rebuilding our country’s shamefully lacking mental health system is not part of the plan.

It is also clear why. Powerful lobbying forces in Washington are fiercely jostling to capture the money allocated to the infrastructure program. Whatever emerges will reflect how much political and economic muscle each industry can exert on the politicians doing the horse trading. In this battle of the titans, people with mental illness are voiceless and their advocacy groups lack political and economic muscle.

The care of people with severe mental illness is necessarily a public responsibility that has been neglected in our primarily for-profit private health care system. The United States has shirked this public responsibility more than any other developed nation on earth. The Biden plan is a sad lost opportunity to play catch-up on desperately needed mental health services and its exclusion of mental health means there is no hope in sight.

Mahatma Gandhi once said that a nation’s greatness is judged by how it treats its weakest members. By this standard, the United States is morally bankrupt and the very opposite of great.

Allen Frances is a psychiatrist, professor and chair emeritus of the Duke University Department of Psychiatry, and was chair of the DSM-IV Task Force from 1987 to 1994.

The results of the ASU research initiated by ACMI.

View the full report at:

https://morrisoninstitute.asu.edu/housing_is_health_care

Webinar 

This study examines how housing and in-home supports affect public spending on individuals with chronic mental illness in Maricopa County, Arizona.

It does so through a comparative analysis of average costs per person per year across three housing settings: permanent supportive housing, housing with unknown in-home support, and chronic homelessness.

Specifically, it analyzes costs for housing, health care, and criminal justice during the period of 2014-2019. It also features a small-sample (small-N) case study of a housing setting that provides individualized, 24/7 in-home support to individuals with chronic mental illness (CMI) who have high support needs, examining average costs per person before and after moving into that setting (2016-2019).

Finally, the study outlines recommendations from interviews with dozens of experts who work with and care for individuals with CMI in Maricopa County about reducing costs and improving care.

Read the complete report here.

Read a two-page handout based on the report here.

Watch the webinar describing the report’s highlights.

View the webinar slides.

Read coverage of the report in The Arizona Republic.

Watch the “Housing is Health Care” Video Series, also available below.

 

 

 

 

Photo by Geesling Photography

We have an underclass in Arizona  – our chronically mentally ill, most of whom suffer from schizophrenia.  Society treats this sliver of people with serious mental illness just as cruelly and inhumanely as the lepers of antiquity or the untouchables of India. Many of these persons have no shelter, no bed, no toilet, no shower or bathtub, no running water, no electricity, and no reliable access to food, clean water, or medical care unless they are in jail.

Our public mental health care system is organized for and provides exemplary care for the 90% of Seriously Mentally Ill (“SMI”) persons who have insight into their illness and are mostly compliant with treatment.  But, some SMI persons are chronic, i.e., they are so ill they believe the voices in their heads and their delusions are real, they suffer anosognosia (inability to recognize one’s clinically evident mental illness). They are mostly non-compliant with treatment.  So, they recycle, repeatedly, through treatment programs, emergency rooms, hospitals, the streets, and jails in a hellish existence. Their physical and mental health deteriorates as their families abandon them or become exhausted, struggling to get care for them, and are blocked at every turn.

This underclass results from myths about mental illness, which permeate much of our public mental health care system and block chronically mentally persons from desperately needed care.  As the father of a chronically mentally ill adult, I personally have been told each of the comments paraphrased in quotes below:

  1. Recovery myth: “All persons with SMI can recover and lead a normal life.” In reality, chronic mental illness is more like diabetes and can be managed but rarely, if ever, cured.
  2. Compliance myth: “All persons with SMI can ‘recover’ by complying with treatment in short-term residential programs, community living programs or independent living with ‘wrap-around’ services, combined, as needed, with assertive community treatment (‘ACT’) and occasional involuntary treatment (i.e., injections and short-term hospitalizations), regardless of the severity of their illness.” “He fails to recover because he chooses not to comply with our treatment protocols and rules, so he cannot continue in our treatment program.”  The most severely ill are denied treatment because of the severity of their illness.
  3. Acuity myth: “SMI does not impair her ability to make good decisions and is no excuse for her inappropriate behavior.” In reality, schizophrenia is a physiological impairment of the brain which does affect judgment and behavior.
  4. Fairness myth: “All adults with SMI should be allowed to make their own medical decisions, to refuse treatment, to choose homelessness and never should be subjected to long-term involuntary care, regardless of the severity of their illness.” “Removing such liberty is unfair discrimination against the mentally ill.”
  5. Substance use myth: “It’s just illicit drugs.” ”We cannot treat his mental illness until he overcomes his substance use problem.”  In reality, 75% of SMI persons who are chronically afflicted self-medicate with illicit substances for temporary relief from painful symptoms at some point in their life, which exacerbates their illness.

These myths coalesce into an unconscious, sometimes deliberate, and often-denied culture of blocking chronically-afflicted persons from care because “he won’t comply”; “he uses drugs”; or, “he’s an adult and makes his own choices.”  In reality, she thinks the voices and delusions are real, and hence she cannot participate consistently in the treatment offered to the other 90% of SMI persons who have insight.  She needs a caring system free of these myths, more flexible, more attuned to her individual needs, and more accountable to the public.  And, she might even need long-term involuntary treatment, opponents of which sincerely believe and use these myths to block expansion of such treatment, unwittingly keeping this underclass in our streets and jails.

Dick Dunseath, father of a chronically mentally ill adult son  /  Carefree, Arizona

Founding member of ACMI board

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.

Register Now

Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZYldOyrrjoqHdEvH6ccSIvuuvhqjVOG6_IJ

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

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.