True or False: Three out of four patients with schizophrenia report substance use.
A review of electronic medical records of patients with schizophrenia spectrum disorders in a community teaching hospital’s psychiatric unit found that more than three-quarters used substances such as tobacco and cannabis. Researchers presented their findings in a poster at the virtual 2021 American Psychiatric Association Annual Meeting.
Among patients with schizophrenia, 62.3% used tobacco, 41.5% used cannabis, 40.2% used alcohol, and 27.4% used cocaine. In patients who reported using tobacco, unadjusted odds ratios were 7.24 for comorbid alcohol use, 5.00 for cocaine use, 4.62 for synthetic cannabis use, and 2.80 for cannabis use, according to the study. Multivariate analysis results supported the findings.
With that information, one would hope that the behavioral health providers would do a better job at treating dual diagnosis individuals. Often families of loved ones that have serious mental illness and substance use disorders hear that the person needs to get sober before mental health treatment can be effective. However, they are also then told that the person is too ill to be in the substance use treatment because of their serious mental illness. Kind of a Catch 22 situation. Treatment needs to address both illnesses.
We have an underclass in Arizona – our chronically mentally ill, most of whom suffer from schizophrenia. Society treats this sliver of people with serious mental illness just as cruelly and inhumanely as the lepers of antiquity or the untouchables of India. Many of these persons have no shelter, no bed, no toilet, no shower or bathtub, no running water, no electricity, and no reliable access to food, clean water, or medical care unless they are in jail.
Our public mental health care system is organized for and provides exemplary care for the 90% of Seriously Mentally Ill (“SMI”) persons who have insight into their illness and are mostly compliant with treatment. But, some SMI persons are chronic, i.e., they are so ill they believe the voices in their heads and their delusions are real, they suffer anosognosia (inability to recognize one’s clinically evident mental illness). They are mostly non-compliant with treatment. So, they recycle, repeatedly, through treatment programs, emergency rooms, hospitals, the streets, and jails in a hellish existence. Their physical and mental health deteriorates as their families abandon them or become exhausted, struggling to get care for them, and are blocked at every turn.
This underclass results from myths about mental illness, which permeate much of our public mental health care system and block chronically mentally persons from desperately needed care. As the father of a chronically mentally ill adult, I personally have been told each of the comments paraphrased in quotes below:
Recovery myth: “All persons with SMI can recover and lead a normal life.” In reality, chronic mental illness is more like diabetes and can be managed but rarely, if ever, cured.
Compliance myth: “All persons with SMI can ‘recover’ by complying with treatment in short-term residential programs, community living programs or independent living with ‘wrap-around’ services, combined, as needed, with assertive community treatment (‘ACT’) and occasional involuntary treatment (i.e., injections and short-term hospitalizations), regardless of the severity of their illness.” “He fails to recover because he chooses not to comply with our treatment protocols and rules, so he cannot continue in our treatment program.” The most severely ill are denied treatment because of the severity of their illness.
Acuity myth: “SMI does not impair her ability to make good decisions and is no excuse for her inappropriate behavior.” In reality, schizophrenia is a physiological impairment of the brain which does affect judgment and behavior.
Fairness myth: “All adults with SMI should be allowed to make their own medical decisions, to refuse treatment, to choose homelessness and never should be subjected to long-term involuntary care, regardless of the severity of their illness.” “Removing such liberty is unfair discrimination against the mentally ill.”
Substance use myth: “It’s just illicit drugs.” ”We cannot treat his mental illness until he overcomes his substance use problem.” In reality, 75% of SMI persons who are chronically afflicted self-medicate with illicit substances for temporary relief from painful symptoms at some point in their life, which exacerbates their illness.
These myths coalesce into an unconscious, sometimes deliberate, and often-denied culture of blocking chronically-afflicted persons from care because “he won’t comply”; “he uses drugs”; or, “he’s an adult and makes his own choices.” In reality, she thinks the voices and delusions are real, and hence she cannot participate consistently in the treatment offered to the other 90% of SMI persons who have insight. She needs a caring system free of these myths, more flexible, more attuned to her individual needs, and more accountable to the public. And, she might even need long-term involuntary treatment, opponents of which sincerely believe and use these myths to block expansion of such treatment, unwittingly keeping this underclass in our streets and jails.
Dick Dunseath, father of a chronically mentally ill adult son / Carefree, Arizona
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.
The following bills that seek to enhance the well-being of individuals and families with chronic mental illness in Arizona continue to move forward. Here’s where they stand and how you can help:
SB1059 – Clarifies current law requires that a person with mental illness and substance use diagnosis must be evaluated and not summarily dismissed due to the presence of drugs. The intention is to make treatment consistent.
Status: Passed in the Senate. Passed out of House Committees, currently waiting to go to House floor for a vote. Email all House members.
SB1142 – A tax incentive bill for employers who hire people with serious mental illness. Sets the credit amount at $2 for each hour worked by an SMI employee during the calendar year, not to exceed $20,000, tax-paying business owner. Government agencies excluded.
Status: Passed in the Senate. To be heard in the House Appropriations Committee this Tuesday, 3/30, for a vote.
SB1716 – Currently, only 55 patients from Maricopa County can be at the Arizona State Hospital (ASH) — even when there are empty beds. ASH will no longer limit the number of patients who can be admitted based on the county where the patient lives. Admission should be based on clinical needs.
Reforms the existing ASH Governing Body (Governing Body) to operate without conflicts of interest: Most members will NO LONGER be employees of the Department of Health Services, which oversees ASH. Requires that the Chair of the Independent Oversight Committee (IOC) be invited to Board meetings and provided quarterly reports about human rights violations with patients. Improves transparency — requires Governing Body file annual reports with the Legislature that describe the treatment provides and what is working.
Patient safety improvement: ASH has an outmoded video surveillance system that puts patient safety at risk. We need a better surveillance system. The bill requires ASH to maintain a surveillance system with video and audio and appropriates $500,000 to do so. ASH administration has requested a new system last year and is currently in a Request for Proposal.
Status: Passed in the Senate. To be heard in the House Appropriations Committee this Tuesday, 3/30, for a vote.
SB1029 & SB1030 – Psychiatric security review board (PSRB) bill, SB1029, requires more information and reports for the Board to ensure that it treats patients fairly and protects the public. The Board now operates without enough information on patients when it makes decisions. The bill has a retired judge become the Chair, so the Board operates by fair rules.
Because the PSRB Board opposes any changes and claims that it operates perfectly, SB1030 ends the PSRB and sends the functions that the PSRB performs to the Superior Court in each county. This saves the state money and will ensure that patients get a fair hearing in front of a judge who follows the law.
Status: Passed in the Senate. Passed in the House Committees, waiting to go to the House floor for a vote.
ACMI would like to thank Senator Nancy Barto, the sponsor of these bills, for her tireless and heroic work on behalf of individuals and families living with chronic mental illness in Arizona! When you have an opportunity, please thank her as well.
We realize that everyone’s life is full; if you are unable to call or email but still want to help the chronically mentally ill, you can partner with us financially. ACMI is a group of dedicated volunteers; no one receives a salary. Your gift will go directly toward improving the well-being of people living with chronic mental illness.
Please contact your legislators by this Monday morning.
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 allowingtime for proper evaluation, stabilization, medication, and a proper post hospital plan. We needsupervised 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.
It is well known to physicians like me who have spent a lifetime in Emergency Medicine that many patients are super-utilizers of the healthcare system, which we refer to in the vernacular of the ER as “frequent fliers.”
Quite often, these individuals run up high costs to the healthcare system, driven to emergency department rooms for primary care due to an underlying undertreated or untreated, serious mental illness. I believe that one of the reasons for this failure of treatment is due to a lack of safe, appropriate, and affordable housing. Though there are many other reasons why individuals with serious mental illness fail in our current behavioral health system, a fundamental problem is a lack of safe and affordable housing.
Recent findings in the Milliman firm report, a provider of actuarial and related products and services, entitled “How do individuals with behavioral health conditions contribute to physical and total healthcare spending,” revealed that the authors examined in detail the total health care costs for super-utilizers. Its findings were that just a fraction of individuals with serious mental illness accounted for nearly half the overall health care costs of the entire population of the study group.
Remember that this is only healthcare costs, not other costs associated with undertreated or untreated mental illness, which may include interactions with community resources such as police, fire personnel, and the judicial system. Sadly, this population often ends up in jails and or prisons or homeless due to behaviors related to undertreated or untreated mental illness.
Please look at the recent article by the Treatment Advocacy Center, and its embedded link to the Milliman report for further details.
RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization
By Elizabeth Hancq
RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization
By Elizabeth Hancq
Individuals with severe mental illness are often caught in the revolving door of super-utilization, cycling through inpatient hospitals, emergency departments, jail or homeless shelters.
Super-utilization refers to the phenomenon where a relatively small number of people make relatively frequent use of high-cost services at enormous public expense. Anecdotes of the role of severe mental illness in super-utilization can be found in countless local media stories, such as ‘Super Dave’ in Tennessee who was arrested more than 250 times in his lifetime, or ‘Jane’ in New Jersey who generated $4.4 million dollars in hospital charges in a five-year period.
However, the enumerated costs of the role of severe mental illness in super-utilization are largely unknown. “Accounting for barely 3% of the adult population, individuals with diagnoses of schizophrenia and severe bipolar disorder are known to be overrepresented in the systems most affected by the failure of the US mental health system, principally when untreated. Yet despite the human and economic toll of this pattern, the role of SMI in high utilization is largely uncharted,” the Office of Research and Public Affairs wrote in the 2017 report on the topic, A Crisis in Search of Data.
A ground-breaking new report released last week by Milliman is an important step toward understanding the role of serious mental illness in high utilization of health and mental health care services. The report’s findings provide cost estimates to the total healthcare services received and compares spending patterns between high-cost groups, with a focus on mental health and substance use disorders.
The study authors utilized 2017 healthcare claims data from 21 million individuals with commercial insurance. They compared levels of spending for physical and mental health care by spending group, high- cost (top 10%) and non-high-cost (remaining 90%), across the prevalence of mental health and substance use disorders among this population.
The researchers found that 57% of the individuals in the high-cost group had a mental health or substance use disorder, accounting for less than 6% of the total population but 44% of the total healthcare costs. Although the total healthcare costs for the individuals in this group averaged $45,782 per year, half of these individuals had less than $95 of spending for mental health or substance use disorder treatment in a one-year period.
Accounting for fewer than 1% of the 21 million individuals in the study sample, individuals with severe mental illness accounted for 3.3% of the total healthcare costs with the highest percentage of mental health service costs for any of the groups studied. Individuals with severe mental illness “have 6.3 times higher annual total healthcare costs and 4.2 times higher medical/surgical costs,” according to the report.
The findings in the report have important implications for policy makers and insurers to consider regarding the health coverage and spending associated with high-cost individuals. The report further validates the role of severe mental illness in super-utilization and points to how the current fragmented healthcare system has contributed to a lack of equitable, accessible treatment for individuals with severe mental illness. In addition, the findings underscore the importance of integrated mental health and substance use disorder treatment to prevent the high impact of these disorders on healthcare spending and reduce the personal and societal consequences of lack of treatment for individuals in need.