[This is the second part of a two-part article about the system of surveillance and social control that has been established in this country with psychiatric involuntary commitment laws at its center, and about a possible campaign to end Kendra’s Law or Assisted Outpatient Treatment in New York State. Part I has already been posted.]
… But I would not be convicted by a jury of my peers,
Still crazy after all these years …
“Still Crazy After All These Years”
Paul Simon, 1975
New York’s involuntary outpatient commitment (IOC) law, known as Assisted Outpatient Treatment and popularly as Kendra’s Law, was instituted in 1999 after a ten-year long debate and a preliminary three-year long demonstration project conducted at Bellevue Hospital in New York City from 1995 to 1998.
In all likelihood, the debate was triggered by the infamous 1987 court case and ruling involving “Billy Boggs”, the pseudonym used for the woman at the center of the case, who drew considerable public attention to herself after living for nearly a year over a heating grate in New York City’s affluent Upper East Side. In response to complaints from the neighborhood’s residents, the City’s Health and Hospital Corporation (HHC) had Ms. Boggs hospitalized in a City psychiatric hospital; which triggered several rounds of litigation, ending in a decision rendered by the State’s Appeals Court.
As embodied in the U.S. Constitution, all levels of government have two types of power which enables them to make and enforce laws : police power, which empowers them to protect the individuals who live within their jurisdictions, and what is deemed parental power, formally parens patriae, which allows government to protect those individuals who can’t protect themselves. The former supports the “dangerousness to self and others” rationale used in most State mental health statutes to authorize involuntary in-patient hospitalizations – in New York, section 9.39 of its Mental Hygiene law; the latter underscores the “poor judgment” or “lack of insight” on the part of an individual which prevents that individual from adequately caring for him- or herself and will eventually result in that individual becoming dangerous to self or others – section 9.60 of the New York law, which embodies Kendra’s Law. Anosognosia is the putative clinical counterpart of that same concept, i.e., a person can’t know she/he is crazy if she/he is crazy. (And, conversely, if a person denies she/he is crazy then she/he actually is.)
Paul Stavis, a legal scholar, points out that HHC justified its hospitalization by alleging Ms. Boggs’s “dangerousness” to others, i.e., by using its police power. Its lawyers never contended, as they could have, that Ms. Boggs simply couldn’t care for herself, would inevitably deteriorate and endanger her own well-being. Accordingly, when Ms. Boggs refused further treatment on the grounds that she did not represent a threat to herself or to others, the Appeals Court agreed with her and obliged HHC to discharge her. This raised alarms throughout much of the psychiatric provider community which, led by E. Fuller Torrey, began to push to close what they viewed as a major loophole in the involuntary commitment laws. Emphasizing the potential for violence of persons diagnosed with serious mental illnesses, despite evidence to the contrary, and their alleged inability to care for themselves when untreated, i.e., unmedicated, the Torreyites lobbied State legislatures to pass outpatient commitment laws. To date, 44 states have passed such laws; it should be noted that all 50 states have involuntary inpatient commitment laws on their books.
The States began revising their involuntary inpatient commitment laws in the 1970’s, when deinstitutionalization began to peak. Presumed need for treatment no longer sufficed as a reason for a person to be involuntarily hospitalized when she/he could now be treated in the community. Rather, the new statutes emphasized dangerousness to self and others as justification for involuntary inpatient commitment. At the same time, however, the first States began to ratify involuntary outpatient commitment (IOC) laws. Viewed in tandem, the new commitment laws appeared to represent a direct denial of the freedom from involuntary psychiatric commitment or incarceration so recently awarded to liberated psychiatric inmates. They also constituted a betrayal to psychiatric survivors like Judi Chamberlin and members of the Mental Patients Liberation Front, an historical affronty that continues to resonate today. For these very reasons, IOC laws have achieved a political notoriety out of all proportion to the number of IOC orders issued over the years. Even in New York’s showcase program, Assisted Outpatient Treatment (AOT), little more than 10,000 IOC or AOT orders were issued during its first ten years; even now, little more than 1,000 of the approximately 100,000 persons served in New York’s public mental health system have current AOT court orders. Back in 1987, the Billy Boggs decision seemed to validate psychiatric survivors’ concerns and to reflect a commitment by the Courts to protect psychiatric inmates’ civil rights; but it also precipitated the Torreyites’ backlash.
The six states that have resisted ratifying IOC laws – Connecticut, Maryland, Massachusetts, Nevada, New Mexico and Tennessee — have done so largely to avoid infringing on psychiatric patients’ personal liberty and their civil rights. In short, they have foregone resorting to their parental powers and the belief that persons caught up in the mental health system are incapable of making judicious decisions regarding their own welfare. New York State exhibited similar concerns for years and a consequent ambivalence toward instituting a permanent IOC law. Before considering passage, New York decided to enhance its community-based mental health system by adopting the Community Reinvestment Law in 1993, initiating a process of adding community-based services – case management; treatment; housing — to its public mental health system as it closed anachronistic and superfluous state hospitals. The idea was to leverage the system, i.e., increase its attractiveness, and so induce its patients to commit to treatment and remain in the system of their own accord. As a consequence, New York’s remains the most amply funded public mental health system in the country.
The Bellevue Demonstration project began operations in 1995 and was authorized by the State legislature to continue through July, 1999. While it reported generally positive outcomes for its participants – decreased hospitalizations; decreased incidences of violence against self or others; decreased involvement with the criminal justice system; decreased homelessness; increased treatment compliance – its evaluative research component could not determine which intervening variable was more responsible for these results: the coercion implicit in the court orders mandating individualized treatment regimens, or the comprehensive treatment and housing resources made available to participants. Despite this inconclusiveness, the legislature proceeded to enact Kendra’s Law, persuaded in the main by a murderous act perpetrated by an apparently untreated and allegedly deranged man who pushed a young student, Kendra Webdale, to her death in front of a City subway train. This was indeed the strategy pursued by the Torreyites – to exploit an act of violence committed by an allegedly deranged and untreated person and hold it forth as an illustration of what all such persons were capable of if left untreated. (For a more complete discussion of this phenomenon, c.f. my posting on this website on October 8, “More on New York’s Kendra’s Law: Opponents Lining Up For Decisive Battle in 2015.”) Politicians, their personal allegiances to libertarian principles of personal freedom notwithstanding, still had to cover themselves in the face of the public clamor for stern remedies that these incidents invariably provoked. So Kendra’s Law was passed in 1999 and became effective a year later, but for only what have turned out to be five year increments through 2010, with the last such extension due to expire in 2015.
The first extension, in 2005, was approved with the proviso that an independent entity conduct an evaluative study to address the questions left unanswered by the Bellevue demo, as well as to investigate certain concerns that had arisen during AOT’s first five years. Researchers from Duke University were contracted, and , not surprisingly, they uncovered positive outcomes quite similar to the Bellevue demo. The Duke study team also confirmed the value of the resource-rich program in securing participants’ cooperation; but it did Bellevue one better by determining that the coercive value of the court order played a similarly decisive role. It did note and verify two anomalous aspects of the program – the disproportionate issuance of AOT orders in the general metropolitan New York area, i.e., the southern and more populated part of the State, as well as in Erie County, the location of Buffalo, the second largest city in the State, and the disproportionate issuance of AOT orders to African-American participants residing in New York City. To the incredulity of many, including this writer, the Duke team found no evidence of institutional racism in this singular phenomenon. (I discuss these issues at some length in an article posted on this website on June 29, “New York State’s Assisted Out-Patient Treatment Program: Racial Myths & Other Stereotypes.”)
Several months before the second and last extension to date, in 2010, Psychiatric Services published a “Special Section on Assisted Outpatient Treatment in New York,” comprising a series of evaluative articles that addressed those analyses made by the Duke study that appeared inconclusive or equivocal. Phelan and colleagues, in “Effectiveness and Outcomes of Assisted Outpatient Treatment in New York State” (February, 2010), examined the issue of coercion vs. service enhancement and determined the following: “ … because outpatient commitment included treatment and other enhancements, these [positive] findings should be interpreted in terms of the overall impact of outpatient commitment, not of legal coercion per se. As such, the results do not support the expansion of coercion in psychiatric treatment” (Italics mine). Unfortunately, facts and figures appeared to only marginally impact deliberations in the legislature and another five year extension for AOT was approved. The debate that will ensue in 2015, when the Torreyites are sure to push to make AOT a permanent statute, will be heated and, I suspect, more emotional than rational. Expect another round of crazy people portrayed in the tabloids as killing or attacking innocent New Yorkers. Accordingly, it will be paramount, as I wrote earlier, to replace damaging stereotypes of those who will be most adversely affected by a permanent law with portraits of all psychiatric survivors as commonplace yet steadfast individuals who have been victimized by yet managed to withstand life-threatening diseases and shortened lifespans occasioned by the very medications that had been promised to protect and restore their lives.
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The personal is political…
Carol Hanisch, 1969
In my estimation, the best approach to ending Kendra’s Law in New York State is the most direct – challenging the parens patriae or parental power underpinning of the law. This will require demonstrating to lawmakers and the general public that persons caught up in the public mental health system do not require government to tell them how best to safeguard their well-being. In truth, Judi Chamberlin and those who have come after her have been intent on doing just that for the past thirty-plus years. Chamberlin’s On Our Own chronicles her attempts to establish and promote survivor-led program alternatives to those under the auspices of the public mental health system. To this day, the National Empowerment Center (NEC) and organizations such as the New York Association for Psychiatric Rehabilitation Services (NYAPRS) have continued those efforts. Unfortunately, the Federal government, through SAMHSA, and New York State’s Office of Mental Health (NYSOMH), among others, have largely co-opted those efforts, funding and effectively incorporating into the public system most, if not all, peer/survivor-led programs. It’s not the money that’s the problem — many of these programs are doing good work and need to survive and pay their employees’ salaries. The problem is the obligation imposed by their funders that they adopt the bio-medical model and the psychoactive medications that go with them as integral to their programs. Often, now, you can’t tell the players without a scorecard, with peer specialists usually as intent as their professional counterparts in urging medication compliance on those they’re purporting to help.
What most folks know who are still caught up in the mental health system – best estimates number them at approximately 6 million nationwide – as do virtually all psychiatric survivors, is that psychoactive medications do them more harm than good, particularly if taken for an extended period of time.
The 16-state study conducted by the National Association of State Mental Health Program Directors (NASMHPD)(2006), the one most often cited, drew direct causal links between the prescription of atypical neuroleptic medications, dramatically shortened lifespans and a host of other medical problems, such as those listed below. Similar studies regarding SSRI’s and anti-epileptic/mood disorder medications produced similar outcomes:
• public mental health system clients experience higher rates of medical disease: those prescribed atypicals are 5x more likely than the general public to die of heart attacks; those prescribed SSRI’s are approximately twice as likely to die of heart attacks.
• those prescribed atypicals are 7x more likely to develop diabetes II; those prescribed SSRI’s are twice as likely; those prescribed anti-epileptics 2-3x as likely.
• These individuals lose an average 25 years of life expectancy, with persons considered to have serious mental illnesses suffering an annual death rate of 3.5%, as compared to a death rate for the general population of 1%. Specifically: of those prescribed atypicals, 20-33% will be dead within 10 years; of those prescribed SSRI’s, 20% will be dead within 10 years; of those prescribed lithium, 15% will be dead within 5-10 years.
(The information above, particularly as re. SSRI’s and anti-epileptics, is largely derived from Dr. Grace Jackson’s powerpoint presentation, “Brain Repair,” and accompanying references, presented at the annual ISEPP conference, November 2, 2012, http://isepp.wordpress.com/brain-repair/.)
To add to the foregoing, Dr. David Healy recently posted “The Madness of Psychiatry” at www.madinamerica.com, (November 8), in which he wrote that “a large number of studies … have shown that patients with psychosis are 2 to 3 times more likely to die in any one year than the rest of us.” Further, and shockingly, “… Patients with schizophrenia are ten times more likely to be dead at the end of the first year of treatment than they were 100 years ago … Death in the early years of schizophrenia … comes from suicide … The evidence points to the antipsychotics. In placebo controlled double blind trials these drugs show an excess of suicides and suicidal acts with drugs like Zyprexa having the highest suicide and suicidal act rate in clinical trial history … The problem almost certainly stems from drug induced dysphoria…”
Even more recently, on November 27, Dr. Hua Jin and colleagues posted on the Journal of Clinical Psychiatry website (www.psychiatrist.com) a study titled “Comparison of Longer-Term Safety and Effectiveness of 4 Atypical Antipsychotics in Patients Over Age 40 …” They write: “… Overall results suggested a high discontinuation rate [by study subjects] …, lack of significant improvement in psychopathology, and high cumulative incidence of metabolic syndrome (36.5% in one year) and of serious (23.7%) and nonserious (50.8%) adverse events for all atypical antipsychotics in the study.” They conclude that “… we found a lack of effectiveness and a high incidence of side effects with 4 commonly prescribed atypical antipsychotics across diagnostic groups in patients over age 40 … Caution in the use of these drugs is warranted in middle-aged and older patients.”
Older or younger, these drugs cause serious problems for those who take them. More and more studies are being undertaken to study them and their general toxicity and more and more psychiatrist prescribers know how dangerous they are. Their patients might not be conversant with the studies and their outcomes, but they know what helps and what doesn’t, to witness the “high discontinuation rate” cited in the above study. As I’ve written in previous posts, I always advised my case managers in the program I administered for seventeen years that at least 50% of all their clients would not be taking their medications at any given time.
It follows from the above that the focus of the challenge to the State’s parental power should be the involuntary or forced regimens of medications imposed on those individuals who receive AOT court orders. The coercion implicit in these orders effectively constitutes a denial of freedom that has life-threatening consequences for those who receive them. And how better to present graphically and symbolically this denial of a patient’s right to choose how she/he is to be helped and by whom than with a photo montage of all the individuals who have died in New York state consequent to being prescribed atypical neuroleptic medications over the past twenty years, or since the atypicals began to be marketed by Big Pharma. Perhaps one of the talented film makers who now form part of a re-born survivor movement, like Dan Mackler, could take the lead here and produce the montage and a DVD depicting its assemblage that could be given a Statewide and possibly national distribution. In sum, the key issue for the State and its legislators to address is whether they intend to continue to be parties to AOT recipients’ assisted suicides.
This approach would require and therefore permit a sharp critique of the bio-medical model and its limitations. It would also allow for a discussion of individual choice in treatment, particularly as regards medication. It is one thing to have medication forced on you … choice flies out the window. It is still another to be cajoled into taking psychoactive meds by apparently well-meaning providers. As I wrote in an earlier posting, “Kindness becomes seduction and free choice becomes an illusion.” No, I’m referring to choice informed by consequences: where an individual is fully schooled in what might happen if she/he did or did not take psychoactive meds; where an individual can choose to take or not take meds or decide to end, modify or even begin a medication regimen at any time during the course of her/his treatment; where there will be no punitive consequences for the individual, regardless of her/his choice. Admittedly, this sounds like so much kumbaya, because I have great difficulty envisioning any prescriber doing what I’m suggesting. Nonetheless, it is an issue that needs to be raised since most folks caught up in the public mental health system are expected to comply with a medication regimen, with or without an AOT order. Again, a discussion about choice necessarily leads to discussion of the biomedical model and the toxicity of psychoactive medications. In the last half dozen or so years when data about the latter began to attract widespread notice among providers and peer/survivors, I have yet to hear in any public forum in New York any discussion about either issue. It’s time one took place.
Finally, I would not make an issue about the still generously funded New York
public mental health system. Any public figure who decides to support the end of Kendra’s Law will need political cover for the storm of outrage that is sure to erupt from the Torreyites and their authoritarian allies. Horror stories real and imagined will be paraded before the public in an attempt to panic the uninformed and generate opposition from those who fear persons considered deranged and dangerous. Arguments will need to be made, such as they were this past summer when two NYC police officers were stabbed by persons labeled in the tabloid press as mental patients, that the public mental health system’s array of services will attract persons in need of treatment and ensure their compliance. Frankly, I would like nothing better than to have the public system pared down, but the struggle to end Kendra’s Law will not be an opportune time to push that objective. The truth is, a public mental health system rooted in a psychosocial understanding of individuals’ problems in living will be needed for the foreseeable future to provide guidance and support to those who need it. In fact, should Kendra’s Law end, the millions of dollars used to support its elaborate administrative infrastructure could be re-directed to introduce into New York proven, innovative treatment interventions such as Soteria House and the Finns’ Open Dialogue.
Some final words. At the risk of sounding grandiose, should the effort to end Kendra’s Law be successful, one would hope that it might inspire similar efforts to end IOC laws elsewhere. One would also hope that success, or even a well-organized campaign, would serve as a source of encouragement for child advocates in the schools and older Americans’ advocates in the country’s nursing homes. Succeed or fail, his struggle must be led by psychiatric survivors if it is to be credible and must be supported by those of their professional allies who endorse their leadership. Dan Hazen, Laura Delgado and Dr. Grace Jackson, among others: are you ready? Anyone else who might be interested in joining this struggle, please contact me via the madinamerica e-mail link. It should be an exciting time. Don’t forget, we are all prisoners of hope. And remember — don’t mourn, organize!
References:
Carney, J., :More on New York’s Kendra’s Law: Opponents Lining Up for Decisive Battle in 2015,” October 4, 2012, www.madinamerica.com
Clifton, C.W., Manderscheid, R.W., “Congruencies in Increased Mortality Rates, Years of Potential Life Lost and Causes of Death Among Public Mental Health Clients in Eight States,” Preventing Chronic Disease, Center for Disease Control, March 15, 2006, http://www.ncbi.nim.nih.gov/pmc
FindLaw for Legal Professionals, N.Y. Mental Hygiene Law, Section 9.39, Emergency Admisssions for Immediate Observation, Care and Treatment, and Section 9.60, Assisted Outpatient Treatment, http://codes.lp.findlaw.com/nycode
Hanisch, C., “The Personal is Political,” March, 1969, http://www.carolhanisch.org/CHwritings/PIP.html
Healy, D., “The Madness of Psychiatry,” November 8, 2012, www.madinamerica.com
Hua Jin, et al, “Comparison of Longer-Term Safety and Effectiveness of 4 Atypical Antipsychotics in Patients Over Age 40: A Trial Using Equipoise-Stratifies Randomization,” posted online November 27, 2012, www.psychiatrist.com
Jackson, G., “Brain Repair: A Lecture by Grace Jackson, M.D.,” powerpoint presentation and references, November 2, 2012, http://isepp.wordpress.com/brain-repair/
McSherry, B., “Time to Rethink Mental Health Laws for Treatment Without Consent,” January, 2012, http://psychrights.org/
Monahan, J., et al, “Mandated Community Treatment: Beyond Outpatient Commitment, Psychiatric Services, September, 2001, Vol. 52, #9, pp. 1198-2005,
www.macarthur.virginia.edu/article.pdf and www.ncbi.nimh.nih.gov/pubmed
Morrison, A.P., et al, “Antipsychotics: Is It Time to Introduce Patient Choice?”, British Journal Of Psychiatry, 2012, Vol. 201, pp. 83-4, http://bjp.rcpsych.org/
Phelan, J.C., et al, “Effectiveness and Outcomes of Assisted Outpatient Treatment in New York State,” Psychiatric Services, February, 2010, Vol. 61, #2, pp. 137-142, ps.psychiatryonline.org
Parks, J. et al, “Morbidity and Mortality in People with Serious Metal Illness,” Mational Association of State Mental Health Program Directors, October, 2006, www.nasmhpd.org
Simon, P., “Still Crazy After All These Years,” Paul Simon Music, 1975
Stavis, P.F., “Involuntary Hospitalization in the Modern Era: Is “Dangerousness” Ambiguous or Obsolete?”, 1989, reprinted at Treatment Advocacy Center, http://www.treatmentadvocacycenter.org/
Swartz, M.S., et al, “New York State Assisted Outpatient Treatment Program Evaluation,” Policy Research Associates, Duke University, June 30, 2009
Tellson, H., et al, “Report of the Bellevue Hospital Center Outpatient Commitment Pilot Program,” February 19, 1999, reprinted at Treatment Advocacy Center, http://www.treatmentadvocacycenter.org/
Treatment Advocacy Center, “Assisted Outpatient Treatment Laws,” 2011, http://www.treatmentadvocacycenter.org/
Treatment Advocacy Center, “State Standards for Assisted Treatment,” June, 2011, http://www.treatmentadvocacycenter.org/
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