Some people need help to get help

March 1, 2008
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A personal reflection on the value of assisted outpatient treatment

Editor's note: Assisted outpatient treatment (AOT) stirs the passions of people in the mental healthcare field like few other issues. Behavioral Healthcare invited Kurt Entsminger to share his views on AOT because he not only was recently appointed executive director of the Treatment Advocacy Center, which supports AOT, but he also is a mental healthcare consumer.

We want to hear from you as well. Send your letters to dedwards@vendomegrp.com, or comment on Mr. Entsminger's article online at http://www.behavioral.net.

I understand firsthand the difference that effective treatment can make in allowing someone with a severe mental illness to function normally again. I have bipolar disorder, like approximately 2.3 million Americans (almost 1% of the U.S. population). When my mental illness was untreated, it affected me, my family, my job, and those around me.

Like many people with bipolar disorder, I was first diagnosed with depression. Eventually that diagnosis was changed to bipolar disorder. I was an attorney, a litigator, which requires a great deal of focus and energy. It was not unusual for me to go weeks at a time with minimal sleep when I was going through a manic phase, and then finish a trial and go into a deep depression for several weeks. My family will tell you that it wasn't much fun having me around.

My life as I know it today is possible because I received, and continue to receive, treatment. So it is no surprise that I believe strongly in the importance of ensuring that everyone with a severe mental illness has access to lifesaving treatment.

Yet only about half of the 4 million people afflicted with bipolar disorder or schizophrenia are receiving treatment on any given day. That means 2 million people with schizophrenia or bipolar disorder are untreated, an unfathomable number when you consider the treatable nature of these illnesses. According to the National Advisory Mental Health Council, the treatment success rate for bipolar disorder is a remarkable 80%, and the treatment success rate for schizophrenia is comparable to the treatment success rate for heart disease.

The results of failing to help so many who are so ill are catastrophic. Far too many people with schizophrenia or bipolar disorder are warehoused in our prisons or living on our streets, and many unnecessarily remain at risk for suicide or violence.

Incarceration. At least 10% of the 2.2 million inmates in the nation's jails and prisons—220,000 individuals—have serious psychiatric disorders, mostly schizophrenia and bipolar disorder. This is equivalent to the entire population of Akron, Richmond, or Tacoma.

Homelessness. At any given time, many more people with untreated severe psychiatric illnesses are living on America's streets than receiving care in hospitals. Between 150,000 and 200,000 individuals with schizophrenia or manic-depressive illness are homeless.

Suicide. At least 5,000 individuals who commit suicide each year are psychotic at the time of their suicide. Suicide is the number-one cause of premature death among people with bipolar disorder, with 15 to 17% taking their own lives. The rate in the general population is around 1%.

Violence. Incidents like the one at Virginia Tech draw the attention of media and legislators, and the science and data show that violence is a reality for a small group of those who remain untreated.

Stigma. Most mental health organizations prefer to ignore or refute the truth on violence out of some misplaced desire not to stigmatize everyone with a similar diagnosis. The problem with this approach is that the violent episodes continue and are themselves the cause of stigma. Until the violence is stopped by getting treatment to those who need it, the episodes and resulting stigma will remain.

These consequences of failing to treat people who have treatable illnesses are, in a word, maddening. This is especially the case when you consider that for a percentage of those with very severe mental illnesses, rational thought isn't an option. In other words, they have no way to escape consequences like these unless someone steps in to help them.

In my case, those who were closest to me recognized better than I did that I needed help. My hospitalization and subsequent and continuing treatment are the reason I'm well today—and that wouldn't have happened without the love, care, and insistence of my wife.

Some people need help to get help. Those who lack insight into their illness often require court-ordered treatment if they are to have any treatment at all. They cannot advocate for themselves because they do not recognize that they are in peril. Yet instead of rallying around these sickest people to try to get them the help they need, the mental health community has become the biggest blocker to making the tool of assisted outpatient treatment (AOT) more widely available.

AOT saves lives. Seminole County, Florida, ran a model program of AOT that resulted in a 72% decrease in jail days—a savings of more than $15,000 per patient. The patients also experienced an overall reduction of 43% in hospitalization days. The results from Kendra's Law in New York are similarly impressive: 77% fewer experienced psychiatric hospitalization; 83% fewer experienced arrest; and 87% fewer experienced incarceration.

The mental health community actually champions court-ordered treatment already. In large numbers, they have come out in support of the humanity of mental health courts, which can order someone into treatment once he has committed a crime. Yet there is reticence in the mental health community to publicly support AOT, which provides similar, if not more, due process protections and allows someone to get the help he needs before he deteriorates and lands in jail. That is completely illogical.

I believe it is time to restore common sense to a society that has literally sacrificed human sanity in the name of personal privacy and an outdated and unrealistic understanding of what constitutes true civil rights. I know firsthand what it is like to be hospitalized against your will. But I also know what it is like to be unable to make a rational choice.

There is no greater imprisonment than being psychotic. AOT provides a key to freeing people from psychosis, allowing them to function normally again. I don't think there is any greater civil liberty than that. Much good has been done in the name of civil rights, but this is the horrific twisting of the concept that I cannot abide: that court-ordering someone who is severely ill and lacks insight into needed mental health treatment is somehow harming him.

Kurt Entsminger, Esq, is Executive Director of the Treatment Advocacy Center, The Treatment Advocacy Center is a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illnesses. TAC takes no money from pharmaceutical companies.

For more information, visit http://www.treatmentadvocacycenter.org.

Suggested Reading

  1. Amador X. I Am Not Sick, I Don't Need Help! How to Help Someone With Mental Illness Accept Treatment. Peconic, N.Y.:Vida Press; 2007.
  2. Isaac RJ, Armat VC. Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill. Washington, D.C.:Treatment Advocacy Center; 2000.
  3. N.Y. State Office of Mental Health. Kendra's Law: Final Report on the Status of Assisted Outpatient Treatment.2005. http://www.omh.state.ny.us/omhweb/Kendra_web/finalreport/AOT Final2005.pdf.
  4. Torrey EF, Knable MB. Surviving Manic Depression: A Manual on Bipolar Disorder for Patients, Families, and Providers. New York:Basic Books; 2002.
  5. Torrey EF. Out of the Shadows: Confronting America's Mental Illness Crisis. New York:John Wiley and Sons; 1997.
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