Insane Consequences proposes smart, compassionate, affordable, and sweeping reforms designed to send the most seriously ill to the head of the line for services rather than to jails, shelters, prisons, and morgues. It lays out a road map to spend less on mental "health" and more on mental "illness"replace mission creep with mission control and return the mental health system to a focus on the most seriously ill. It is not money that is lacking; it's leadership.
This book is a must-read for anyone who works in the mental health industry or cares about the mentally ill, violence, homelessness, incarceration, or public policy.
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About the Author
DJ Jaffe is executive director of Mental Illness Policy Org., a nonpartisan think tank, which creates detailed policy analysis for legislators, the media, and advocates. He regularly appears on television and has written opinion pieces for the New York Times, Washington Post, Wall Street Journal, and articles for National Review and Huffington Post. He has served with numerous nonprofits including the Treatment Advocacy Center and National Alliance on Mental Illness. He has a seriously mentally ill relative and lives with his wife, Rose, and dog, Pickles, in Harlem.
Read an Excerpt
How the Mental Health Industry Fails the Mentally Ill
By DJ Jaffe
Prometheus BooksCopyright © 2017 Mental Illness Policy Org.
All rights reserved.
HUMAN CONSEQUENCES OF IGNORING THE SERIOUSLY MENTALLY ILL
"We have a Humpty Dumpty mental health system."
When the mental "illness" system disappeared and the mental "health" system replaced it, homelessness, hospitalization, crime, arrest, violence, incarceration, shootings of and by police, and expenditures for mental illness all went up. The only metrics going down are the number of psychiatric beds available to treat the seriously mentally ill and the number of nonprofits, government agencies, advocates, and politicians that care. We're in this mess because the mental health industry convinced the government to abandon treating the most seriously mentally ill in favor of serving the highest functioning. This focus on improving mental health over treating serious mental illness has Insane Consequences.
High-profile tragedies are so common that the National Association of State Mental Health Program Directors (NASMHPD) created a "toolkit" to deflect media criticism away from state mental health directors when they are appropriately "put on the hot seat" after someone with untreated serious mental illness goes on a rampage. Their "toolkit" includes fact sheets to convince the media that mental illness is not associated with violence, violence by the mentally ill cannot be predicted, and the public has nothing to fear. All this is false.
INCREASED VIOLENCE IN THE COMMUNITY
Mass murders by people with untreated serious mental illness are exceedingly rare, but seem increasingly common. James Holmes gained celebrity status when he shot and killed twelve people in an Aurora, Colorado, movie theater. He was previously identified by a school psychologist as being mentally ill and potentially dangerous, but he was not required to be in treatment. Jared Loughner shot Representative Gabrielle Giffords and killed six people in Arizona in January 2011. He, too, was known to be mentally ill and potentially dangerous but was not required to be in treatment. Mentally ill John Zawahri wasn't known to be in treatment when he killed five and wounded more in a mass shooting at Santa Monica College. The siblings of John Hinckley knew he was mentally ill and tried to have him hospitalized for mental illness, before he shot President Reagan, but were unsuccessful.
Mother Jones found 63 percent of mass shooters between 1982 and 2012 had mental illness. Getting mentally ill shooters into treatment might have saved the lives of others, and prevented them from being buried alive behind bars. According to psychiatrist E. Fuller Torrey, author of nine books on serious mental illness and scores of studies, up to 10 percent of all US homicides are likely due to untreated serious mental illness. A 2008 study found that more than twenty-six thousand Americans with a mental illness were incarcerated for murder.
Parents and family members, not the public, are the most likely victims of violence by people with untreated serious mental illness. Of the four thousand homicides in the United States in 2013, where someone killed his own family member, 29 percent were by someone with serious mental illness.
Palm Beach, FL: On January 9, 2013, twenty-three-year-old Alan Farajian fatally stabbed his mother, Gloria Farajian, because of an argument over a TV show. Farajian suffered from bipolar disorder and schizophrenia and had stopped taking medication for those illnesses.
Ocoee, FL: On February 18, 2013, twenty-one-year-old Meagan Jones fatally stabbed her mother, sixty-five-year-old Linda Jones. Linda told authorities that Meagan had bipolar disorder and was off her medication.
Cresson, TX: On January 9, 2013, thirty-year-old Jacob Dwight Farren attacked his mother, fifty-four-year-old Beverly Farren, with a hammer. She said her son was diagnosed with bipolar disorder and wouldn't take medication for that illness.
As shown in appendix B, overwhelming evidence from the United States and other countries shows a clear connection between untreated serious mental illness and violence. Dr. Thomas Insel, immediate past director of the National Institute on Mental Health (NIMH), cited the extensiveness of the evidence:
I'd like to say something which I think is unpopular with many people in the mental health community. But the data I believe are fairly unambiguous. ... An active psychotic illness is associated with irrational behavior and violence can be part of that. The numbers are stunning. ... There is a fifteen fold reduction in risk of homicide, with and without treatment.
After looking at all the research over multiple years, violence researcher John Monahan declared:
The data that have recently become available, fairly read, suggest the one conclusion I did not want to reach: whether the sample is people who are selected for treatment as inmates or patients in institutions or people randomly chosen from the open community, and no matter how many social or demographic factors are statistically taken into account, there appears to be a relationship between mental disorder and violent behavior.
Violence is not associated with poor mental health, mental illness, or serious mental illness. It is clearly associated with serious mental illness that is allowed to go untreated.
INCREASED VIOLENCE IN PSYCHIATRIC WORKPLACES
So many mentally ill are going without treatment that psychiatric workplaces are becoming increasingly dangerous. According to the American Psychiatric Nurses Association (APNA), 75–100 percent of the nursing staff on acute psychiatric units had been assaulted during their careers. It wasn't always like that. Historically, violent patients would remain hospitalized while orderlies controlled them and doctors medicated them; then the danger passed and the patient could be safely released. No longer. As a result of lawsuits brought by mental health industry lawyers, patients, even those involuntarily committed because they are dangerous, maintain the right to refuse treatment. On top of making medicating more difficult, SAMHSA and mental health industry advocates are working to ban the use of restraints and seclusion. When a patient lashes out, the hospital now has little choice but to call the police and have the individual jailed. Mental health advocates are turning patients into prisoners and making hospitals more dangerous for everyone.
As will be seen in chapter 9, treatment could reduce the violence, but advocates and the industry refuse to admit that a connection between untreated serious mental illness and violence exists.
In January 2015, the most extensive survey ever undertaken found 564,708 people were homeless on a given night in the United States. Depending on the age group in question, and how homelessness is defined, the consensus estimate as of 2014 was that, at minimum, 25 percent of the American homeless — 140,000 individuals — were seriously mentally ill at any given point in time. Forty-five percent of the homeless — 250,000 individuals — had any mental illness. More would be labeled homeless if these were annual counts rather than point-in-time counts.
It is not surprising so many seriously ill are homeless. Leaving serious mental illness untreated can cause bizarre behavior that makes living with families untenable and homelessness inevitable. Jennifer Hoff 's son became seriously mentally ill at the age of twelve. She spoke at a 2014 rally held to protest California's neglect of the seriously mentally ill:
My son was so sick he was kept in residential treatment from age twelve to eighteen for safety. He has "crazy boy" tattooed across his face. But when he turned eighteen, he was discharged to live homeless on the streets in front of the Civic Center in Santa Ana. When we tried to get him housing and help ... his case manager said I'd be a better mother if I supported his "choice of housing." I still have that text. I have them all. So we watched — and they watched. They stood by and watched him go off his medications. Today my son is incarcerated.
Being homeless is a terrible way to live. Many shelters won't accept unmedicated seriously mentally ill adults because their intense delusions and sometimes aggressive behavior make it impossible to maintain order. Even so-called "good" shelters often won't accept families with seriously ill children, by claiming they are full. During the day homeless untreated mentally ill cower down streets, scream at voices only they can hear, and forage Dumpsters for food. At night, they search for a street grate that might provide some heat. The seriously mentally ill commit quality-of-life crimes such as trespassing to find a place to sleep or stealing food to eat. Mentally ill who are homeless are more likely to be raped, assaulted, and injured.
INCREASED SUBSTANCE ABUSE
People with serious mental illness often use pot, alcohol, or harder drugs to quell the delusions infesting their heads, leading to higher arrest rates and greater crime. According to a 2006 study, 74 percent of state prisoners, 76 percent of local jail inmates, and 63 percent of state prisoners who had mental health problems used drugs in the month before their arrest. Of adults without mental illness, 6 percent have a substance use disorder. But among those with any mental illness, the percentage is three times higher (18 percent), and for those with serious mental illness, it is almost four times higher (23 percent).
Suicide is always horrible but thankfully rare. Forty-two thousand suicides are completed each year, representing .012 percent of the population. But a disproportionate number, 13 percent, or about five thousand suicides, are likely committed by people with serious mental illness. The lifetime risk to those with schizophrenia is 5 percent and to those with bipolar disorder is 10–15 percent. Suicide rates are up to fifteen times higher for people with serious mental illness in the ninety days following discharge from a psychiatric hospitalization than they are for the general population.
Mental health advocates claim up to 90 percent of suicides are mental illness related. That may be untrue. Whenever anyone takes his life after having lost a spouse or job, received a bad grade in school or a disturbing medical diagnosis, the industry puts the suicide in the mental illness column, even though losing a job, getting a bad grade, and receiving a new medical diagnosis are not mental illnesses. As documented in chapter 12, instead of treatment, the mental health industry uses suicide prevention funds for unproven "awareness" programs featuring their logos and targeted to those least likely to commit suicide. Suicide funds have become a cash cow for mental health nonprofit organizations.
People with untreated serious mental illness are more often victimized than the general public. In their psychotic and delusional state, they are often robbed and raped in shelters, randomly beaten in the street, stuck up by drug dealers, and forced to live a hellish existence. One study found "more than one quarter of persons with serious mental illness (over three million persons) had been victims of a violent crime in the past year, a rate more than 11 times higher than the general population. ... Depending on the type of violent crime (rape/sexual assault, robbery, assault, and their subcategories), victimization was 6 to 23 times greater among persons with serious mental illness than among the general population." Another study found "compared to community controls, patients with schizophrenia-spectrum disorders were significantly more likely to have a record of violent ... and sexually violent victimization." Latifah, the mother of one seriously ill young man, told me,
My son was living at a group home. But he went off his medication and started walking around pounding his bare chest like Tarzan. He would do it for hours so the group home "disappeared" him. We called the police who told us, "He has a right to leave." The only way we could get the police to take our report was to say he didn't have his medications, and ask how it would look if they didn't even take our report and something bad happened. A week later, we got a call saying he was in a hospital in Philadelphia. We drove down, walked into his room, and my stomach turned. Ali's nose was mangled. Teeth were missing. He had a gash in his cheek and bruises that hadn't healed yet. He says, "Hi mom" like nothing happened. He wouldn't tell us what did happen but we think some of the homeless people beat him up to steal his winter coat.
Studies show that some of the increased victimization of persons with mental illness is the result of living in homeless shelters. Other studies attribute the higher than average incidence of victimization of persons with mental illness to their increased use of substances. But while "comorbid substance misuse and criminality both heighten the chances of victimization, they cannot fully account for the increased rates." The higher incidence of victimization can result from the illness itself. The same treatments and policies that can restore sanity and reduce homelessness, incarceration, arrest, and suicide can also reduce victimization. But as will be seen in sections four and five, the mental health system stands in the way of implementing them.
THE DESTRUCTION OF FAMILIES
Leaving people with serious mental illness untreated takes a devastating and invisible toll on families. A delusional, hallucinating loved one who is constantly yelling at the voices in her head, causes all members of the family to walk on eggshells, forced to stand back for fear of creating a scene or worse. Parents and siblings who are unable to force ill relatives into treatment are instead forced to take out orders of protection. The needs of the ill prevent parents from addressing the needs of other children. Families have to cope with drugs and strangers brought into the house. Few can withstand the strain:
"My husband left me. Neither one of us can live with the tension in the house caused by our daughter. He can walk out. I won't abandon her." — Rose
"My son can't take me anymore. That's part of his angst — being 'dependent' on his mom. I don't blame him. I wish he didn't need me and could live independently, drive again. Hopefully someday." — Mary Palafox, after years of providing care to her mentally ill son.
"My daughter is extremely bright, earned an advanced degree and had a promising career in human resource management. About nine years ago, however, she spiraled out of control. She suffers from a psychotic illness but does not believe she is seriously ill and so cannot be in the vicinity of her 9-year-old son as a result of the disturbing behaviors she has exhibited, including kidnapping. As a result, she is now homeless." — Kathleen Branch
If the mental health industry is the villain, moms and dads are the heroes, with siblings and children of the ill not far behind. Moms do everything they can to keep their families together and prevent loved ones from becoming the next "psychotic killer" headline. But they are looked on as pariahs by the mental health industry. Too many doctors, social workers, and mental health administrators will spout platitudes about the importance of family involvement until the family disagrees with their decision to deny their loved ones needed care. Then all bets are off. "The family doesn't understand" or "We have to empower the patient," they are told.
Families are thwarted by hospitals that have shut their doors, community programs that declare their family members "high-needs patients," doctors who are forced by administrators to hide behind patient privacy laws and prevent parents from getting the information they need to help, and industry-supported laws that require their loved ones to become dangerous before they can be treated. Those who work in the system may be well-meaning, but they've acquiesced to bean counting, box-checking "quality improvement" plans that lower quality, prevent improvement, and cause mayhem for families. In one year, an estimated 1,149 persons were killed by a relative with serious mental illness. Rael Jean Isaac, coauthor of Madness in the Streets, put it succinctly: "The family is the new mental institution." Aging parents try to provide case management, housing, and treatment to psychotic and delusional loved ones without the information they need or the authority to enforce compliance. Renee, whose son suffers from schizophrenia, told me,
I try to get my son to see a doctor, but he doesn't believe he is ill, and thinks I'm the ill one. I try to convince him, but that only makes the tension escalate. One day he told me he wants to be a nuclear engineer, and yet he can't even understand his cousin is not Osama-bin Laden.
Excerpted from Insane Consequences by DJ Jaffe. Copyright © 2017 Mental Illness Policy Org.. Excerpted by permission of Prometheus Books.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Foreword E. Fuller Torrey, MD 11
Authors Notes 13
Preface: How I Got Involved 15
Introduction: Overview of Everything 19
Infamous Mentally Ill Adults Who Went Off Treatment 25
Section 1 The Insane Consequences
Chapter 1 Human Consequences of Ignoring the Seriously Mentally Ill 31
Chapter 2 Criminal Justice Consequences of Ignoring the Seriously Mentally Ill 43
Chapter 3 Financial Consequences 53
Section 2 Mental Health vs. Mental Illness: What's the Difference and Why Does it Matter?
Chapter 4 What Serious Mental Illness is Not 61
Chapter 5 What Serious Mental Illness Is and How That Should Drive Policy 65
Chapter 6 What Science Tells Us about Treatment That Should Be Reflected in Policy 77
Section 3 The Mental Health Industry
Chapter 7 Substance Abuse and Mental Health Services Administration (SAMHSA) 97
Chapter 8 The Mental Health Nonprofit Complex and Its Critics 111
Section 4 The Industry is in Denial
Chapter 9 The Industry Fights Efforts to Reduce Violence 133
Chapter 10 The Industry Fights Life-Saving Involuntary Interventions 141
Chapter 11 The Industry Fights Access to Hospitals, Medications, and Electroconvulsive Therapy 147
Section 5 Diverting Funds to What Doesn't Work
Chapter 12 The Industry Diverts Funds to Programs That Lack Evidence and Don't Help 157
Chapter 13 The Industry Diverts Funds to Irrelevant Stigma Programs 175
Section 6 Failing the Seriously Mentally Ill
Chapter 14 Federal Policies That Fail the Seriously Ill 183
Chapter 15 Court Decisions That Failed the Seriously Ill 205
Section 7 Where Do We Go?
Chapter 16 Solutions 221
Chapter 17 The Future 239
Appendix A Serious Mental Illness Defined 243
Appendix B Studies on Violence and Mental Illness 247
Appendix C Studies Correlating Anosognosia with Violence 253
Appendix D Studies on Assisted Outpatient Treatment (AOT) in New York and Elsewhere 257
Appendix E HIPAA Reforms 267