Origins of the TreatmentAdvocacy Center

by E. Fuller Torrey, M.D., President

The Treatment Advocacy Center is aproduct of two circumstances. First, for 15years, I ran a clinic for homelessindividuals with severe psychiatricdisorders. I was saddened by the qualityof many of their lives (e.g., eating out ofgarbage cans, women being raped, etc.)and by how many of them had little or noawareness of their illness because of their

brain dysfunction. Many of them wouldnot accept medication or other treatmentbecause they did not believe they weresick.

The other circumstance was writingOut of the Shadows: ConfrontingAmerica's Mental Illness Crisis, duringwhich I became aware of studies showinga continuing increase in the number ofseverely mentally ill individuals in jailsand prisons. I had visited jails in 15 statesand was aware that the quality of life forseverely mentally ill prisoners is abysmal.I was also profoundly impressed by the

increase in episodes ofviolence associatedwith non-treatment;these episodes ofviolence are theprimary cause ofstigma against mentallyill persons, and itseemed to me that itwould be difficult, ifnot impossible, todecrease stigma untilwe first decreasedviolence.

Mr. and Ms.Stanley, who weregenerously supportingresearch on schizo-phrenia and bipolardisorder, shared myconcern and offered tohelp. After extensiveconsultations withother mental illnessprofessionals and law-yers, we decided thatthe initial focus of ourefforts would be toaddress state treatmentlaws that prevent thetreatment of severelymentally ill individualswho are deterioratingbefore they becamehomeless or incar-cerated. A secondary

objective would be to improve thetreatment system, including the abolitionof the IMD exclusion, so that psychiatricservices could deliver what patients need,not merely what federal Medicaid wouldcover.

The Center formally came intoexistence in the summer of 1998, whenwe opened our office in Arlington. Fromthe outset, we were aware that we wouldencounter substantial and well-organizedopposition. This has included civillibertarians and a small but vocal group ofex-patients who believe that nobody, nomatter how psychotic, should beinvoluntarily treated; anti-medicationprofessionals who acknowledge receivingsupport from anti-treatment forces; andthe Bazelon Center for Mental HealthLaw, which is largely responsible for theanti-treatment bias in state treatment laws.We also knew that our efforts would beopposed by many of the federally fundedProtection and Advocacy (P and A)programs, many of which continue toadvise patients on how to avoid treatment,and by the federal Center for MentalHealth Services, which has funded"consumer-survivor" conferences at

E. Fuller Torrey, M.D., PresidentBoard of Directors

Treatment Advocacy Center

OUR MISSION

THE TREATMENT ADVOCACY CENTER IS ANONPROFIT ORGANIZATION DEDICATED TO

ELIMINATING LEGAL AND CLINICAL BARRIERS TOTIMELY AND HUMANE TREATMENT FOR AMERICANS

WITH SEVERE BRAIN DISORDERS WHO ARE NOTRECEIVING APPROPRIATE MEDICAL CARE. FOCUSINGON SCHIZOPHRENIA AND MANIC-DEPRESSIVE ILLNESS

(BIPOLAR DISORDER), THE CENTER WORKS TOPREVENT THE DEVASTATING CONSEQUENCES OF NON-

TREATMENT: HOMELESSNESS, SUICIDE,VICTIMIZATION, WORSENING OF SYMPTOMS,

VIOLENCE, AND INCARCERATION.

AN ESTIMATED 1.4 MILLION INDIVIDUALS WITHSCHIZOPHRENIA AND MANIC-DEPRESSIVE ILLNESS

ARE NOT BEING TREATED FOR THEIR ILLNESS AT ANYGIVEN TIME. ASSISTED TREATMENT (SUCH AS

OUTPATIENT COMMITMENT, SUBSTITUTEDJUDGEMENT, OR GUARDIANSHIP) MUST BE PROVIDED

BEFORE INDIVIDUALS BECOME A DANGER TOTHEMSELVES OR OTHERS, PARTICULARLY FOR THOSE

WHO LACK AWARENESS OF THEIR ILLNESS—ACOMMON SIDE-EFFECT OF THESE DEVASTATING

DISORDERS.

CURRENT FEDERAL AND STATE POLICIES HINDERTREATMENT FOR PSYCHIATRICALLY ILL INDIVIDUALS.THE CENTER IS WORKING ON THE NATIONAL, STATE,

AND LOCAL LEVELS TO EDUCATE CIVIC, LEGAL,CRIMINAL JUSTICE, AND LEGISLATIVE COMMUNITIES

ON THE BENEFITS OF ASSISTED TREATMENT.

which patients are instructed how to stoptaking medication. Some of these groupshave already threatened litigation to blockthe use of new laws that would maketreatment more accessible to those whorefuse it.

Despite this opposition and theformidable barriers to reversing the non-treatment trend of more than two decades,we launched the Center's efforts to be avoice for those who cannot speak forthemselves because of their illness. Indoing so, we were encouraged by thepeople with whom we consulted,including some who had previously beenon the other side of the treatment issue.There was virtually unanimous agreementthat "the pendulum had swung too far

toward non-treatment." Therefore, theCenter is pushing the pendulum backtoward a more reasonable center.

Meet PresidentE. Fuller Torrey, M.D.

E. Fuller Torrey, M.D. is the leadingresearch psychiatrist specializing inschizophrenia. In addition to his role at theCenter, he is executive director of theStanley Foundation Research Programs,which support research on schizophreniaand manic-depressive illness. He is also aguest researcher with the Clinical BrainDisorder Branch of the National Instituteof Mental Health (NIMH).

He was on the clinical staff of St.Elizabeth's Hospital for nine years,specializing in the treatment of severepsychiatric disorders. After that, Torreydirected a major study of identical twinswith schizophrenia and manic-depressiveillness. His research has explored virusesas a possible cause of these disorders, andhe has carried out research in Ireland andPapua New Guinea.

Dr. Torrey earned his B.A. MagnaCum Laude at Princeton University. Hereceived his M.D. at McGill Universityand an M.A. in Anthropology at StanfordUniversity. He trained in psychiatry atStanford University School of Medicine.

He practiced general medicine inEthiopia as a Peace Corps physician, in theSouth Bronx in an O.E.O. Health Center,and in Alaska in the Indian Health Service.He was a special assistant to the Directorof the National Institute of Mental Healthfor five years.

Dr. Torrey has also written 15 booksand more than 200 lay and professionalpapers including: Out of the Shadows:Confronting America’s Mental IllnessCrisis; Care of the Seriously Mentally Ill:A Rating of State Programs; and SurvivingSchizophrenia: A Family Manual. Someof his books have been translated intoJapanese, Russian, Italian, and Polish.

In addition to books and papers, Dr.Torrey has written for many nationalnewspapers. He also has regularlyappeared on national television newsprograms and talk shows.

Dr. Torrey was one of ten recipients ofa National Caring Award, and the U.S.Public Health Service twice awarded himCommendation Medals. NAMI awarded

him the Special Families Award as well.

A Catalyst To Stop ForcedSuffering From the Conse-quences of Nontreatmentby Mary T.Zdanowicz, J.D.,ExecutiveDirector

The inauguralissue of theT r e a t m e n tA d v o c a c yC e n t e r ' snewsletter wasdedicated in memory of Kenneth ScottHardman. Scott was one of countlessvictims of an untreated mental illness,taking his own life after years of torment.Scott's plight brought his mother, LorraineGaulke to the Treatment Advocacy Centerand inspired her to become the editor ofCatalyst. Our collective hope is that thisnewsletter will serve as a catalyst forchange to eliminate barriers to treatmentfor individuals suffering from seriousmental illnesses, such as schizophreniaand manic-depressive illness.

How did we get to the point where somany individuals with serious mentalillness are suffering needlessly? To answerthat question, we must look back twenty orthirty years to legal and policy reformsthat make it virtually impossible today totreat an individual who refuses treatmentuntil they become dangerous.

Before returning to the past, it isimportant to recognize how much ourunderstanding of and ability to treat theseillnesses has advanced since that time.According to the National AdvisoryMental Health Council, the treatmentsuccess rate for schizophrenia iscomparable to the treatment success ratefor heart disease, and the treatmentsuccess rate for manic-depressive illness isa remarkable 80 percent. Yet, on any givenday, approximately 40 percent ofindividuals with schizophrenia and manic-depressive illness are not receivingtreatment. We now know that a majorcontributing factor to treatment non-compliance is lack of insight, a symptomin which the illness affects that part of thebrain that is used for self-monitoring andcauses the individual to lack awareness of

Catalyst

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Welcome Issue

Catalyst CATALYST IS PUBLISHED SIX TIMES A YEARBY THE TREATMENT ADVOCACY CENTER

THIS IS A SPECIAL EDITION—WELCOME ISSUECONTAINS PREVIOUSLY PUBLISHED ARTICLES, PICTURES,

AND LETTERS TO THE EDITOR

TREATMENT ADVOCACY CENTER3300 NORTH FAIRFAX DRIVE

SUITE 220ARLINGTON, VA 22201PHONE: 703-294-6001

FAX: 703-294-6010WEB SITE: WWW.PSYCHLAWS.ORGE-MAIL: INFO@PSYCHLAWS.ORG

BOARD OF DIRECTORSE. FULLER TORREY, M.D., PRESIDENT

JAMES COPPLE, SECRETARYGERALD TARUTIS, ESQ., TREASURER

JUDGE JAMES D. CAYCERAY COLEMAN

THOMAS N. FAUSTFRED FRESE, PH.D.

CARLA JACOBSD.J. JAFFE

KENNETH KRESS, J.D., PH.D.

EXECUTIVE DIRECTORMARY T. ZDANOWICZ, J.D.

EDITOR/DESKTOP PUBLISHERLORRAINE GAULKE

FUNDING SOURCESSTANLEY FOUNDATIONINDIVIDUAL DONORS

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Catalyst Welcome Issue

his or her illness. Studies have shown thatapproximately half of all patients withschizophrenia and mania have markedlyimpaired awareness of their illness asmeasured by tests of insight; thus, they aresimilar to some patients withcerebrovascular accidents (strokes) andAlzheimer's disease. Such individualsconsistently refuse to take medicationbecause they do not believe they are sick.

We also have ample evidence of thedevastating consequences of non-treatment. Up to 13% of individuals withschizophrenia and 15% of individuals withmanic-depressive illness commit suicide.Approximately 150,000 individuals withserious mental illness are homeless. Asmuch as 16% of the population of ournation's jails and prisons, more than280,000 individuals, suffer from theseillnesses. Individuals with severepsychiatric disorders are 2.7 times morelikely to be victims of violent crimes thanthe general population. Studies suggestthat the adverse effects of delayingtreatment include: increased treatmentresistance, worsening severity ofsymptoms; increased hospitalizations, anddelayed remission of symptoms. A leadingcause of stigma is the nearly 1,000homicides each year in the United Statesthat are committed by individuals who arenot being treated for these illnesses.

Individuals who suffer from lack ofinsight and refuse treatment often gountreated unless some form of assistedtreatment is provided. Assisted treatmentoccurs when a person with a severe mentalillness is treated over an expressedobjection. Assisted treatment is necessarywhen a person is: gravely disabled; indanger of substantial deterioration;incapable of making an informed decisionabout treatment (e.g. lacks insight into hisillness); and/or poses a danger to himselfor others.

There are many forms of assistedtreatment, such as involuntary civilcommitment, assisted outpatient treat-ment, guardianship or conservatorship.Assisted outpatient treatment has beendemonstrated in numerous studies to be aneffective means of ensuring medicationcompliance and reducing hospitalizationsfor individuals who suffer from severemental illnesses, such as schizophreniaand manic depressive illness, but refusetreatment. The study of the Bellevue

Hospital Pilot Outpatient CommitmentProgram showed that, although notstatistically significant, there was asignificant difference in the need forhospitalization between individuals withan assisted outpatient treatment order andthose who did not have an order. In fact,individuals with treatment orders spent57% less time in the hospital than thosewithout orders. A report prepared by theindividuals responsible for implementingthe Bellevue Program described some ofthe benefits of the orders to include thefollowing:

For some patients, the order allowsinitial engagement with service providers,and is rarely an issue after that time. Forother patients, the order serves as anongoing reminder that compliance withoutpatient treatment is necessary toprevent relapse and rehospitalization. Andoutpatient commitment orders appear toincrease feelings of accountability amongpatients about managing serioussymptoms of mental illness such ashallucinations, paranoia and fluctuationsin mood.

Thirty years ago, a course of eventstranspired that made the provision ofassisted treatment exceedingly difficult.During the civil rights revolution in thiscountry, a group of lawyers set out torepresent the rights of individuals withmental illness. The goal of these attorneys,who came to be known as the mentalhealth bar, was not to focus on thetreatment needs of such persons, but ratherto free people regardless of theconsequences. Bruce Ennis, the founder ofthe mental health bar stated, "My personalgoal is either to abolish involuntarycommitment or to set up so manyprocedural roadblocks and hurdles that itwill be difficult, if not impossible, for thestate to commit people against their will."

The mental health bar saw anopportunity to reduce commitments byconfining the basis for commitment todangerousness. This changed the wholefocus and perception of civil commitment;it redirected the purpose of involuntarycommitment from a therapeutic one to onebased on protecting society by removingthose individuals who are dangerous. Itwas, and still is portrayed by many aspunitive, rather than therapeutic. One ofthe first important federal cases, Lessard v.

TREATMENT ADVOCACYCENTER

HONORARY ADVISORYCOMMITTEE

The Committee is composed ofdistinguished individuals who aredevoted to improving the lives ofindividuals who suffer from severemental illnesses. Each individualhas made his or her owncontributions to furthering thatgoal. We thank them for their workand for supporting our mission.

HONORARY ADVISORYCOMMITTEE

S. JAN BRAKEL, J.D.VICE PRESIDENT

ISAAC RAY CENTER, INC.CHICAGO, ILLINOIS

JOHN DAVIS, M.D.UNIVERSITY OF ILLINOIS

AT CHICAGO

HONORABLE PETE V. DOMENICIUNITED STATES SENATE

NEW MEXICO

LAURIE FLYNNALEXANDRIA, VIRGINIA

JEFFREY GELLER, M.D.UNIVERSITY OF MASSACHUSETTS

HONORABLE MARCY KAPTURHOUSE OF REPRESENTATIVES

OHIO

RICHARD LAMB, M.D.UNIVERSITY OF SOUTHERN CALIFORNIA

HONORABLE JIM MCDERMOTTHOUSE OF REPRESENTATIVES

WASHINGTON

HONORABLE LYNN RIVERSHOUSE OF REPRESENTATIVES

MICHIGAN

HONORABLE TED STRICKLANDHOUSE OF REPRESENTATIVES

OHIO

(continued on page 14)

Kendra's Law--TheCulmination of a 10-YearBattle for AssistedOutpatient Treatment inNew Yorkby E. Fuller Torrey, M.D., President, &Mary T. Zdanowicz, J.D., ExecutiveDirector

Before Governor Pataki signed the billthat became Kendra's Law on August 9,1999, New York was one of only 10 stateswithout an assisted outpatient treatmentlaw. Following on the heels of a largelyunsuccessful 10-year effort by advocatesin New York to pass the law, the TreatmentAdvocacy Center played a decisive role inmaking court-ordered communitytreatment available throughout the state.The history of this effort may be helpful toothers who would like to pursue similarreforms in their own states.

Assisted outpatient treatment was firstproposed in New York in 1989 as a way tohelp individuals with brain disorders whosuffer because their illness prevents themfrom accepting treatment. In 1994 theNew York City chapter of NAMIconvinced the New York legislature of theneed for assisted outpatient treatment. Thelegislature established a watered-down,three-year pilot program, recognizing that"some mentally ill persons frequentlyreject the care and treatment offered themon a voluntary basis and decompensate tothe point of requiring repeated psychiatrichospitalizations."

The statutory authorization for theBellevue pilot program was scheduled toexpire June 30, 1999. The New YorkTreatment Advocacy Coalition (NYTAC)was formed in late 1998 to mobilizesupport for both extending the pilotprogram and to make assisted outpatienttreatment available statewide. DJ Jaffe,Treatment Advocacy Center Boardmember and long-time advocate forindividuals with neurobiologicaldisorders, is NYTAC's coordinator.Jonathan Stanley, Treatment AdvocacyCenter Assistant Director, serves as theNYTAC liaison. DJ, Jon, and NYTACmembers were tireless in their efforts.

As the new year approached, it was notclear that New York legislators had thepolitical will to extend assisted outpatient

treatment. All of thatchanged on January3, 1999, whenKendra Webdale, abeautiful, vivacious,32-year-old womanwas pushed to herdeath in front of aNew York subwaytrain by a man withu n t r e a t e dschizophrenia. Herfamily explainedthat, "Kendra wasthe kind of personwho would havetried to help the kindof person whopushed her."

I m m e d i a t e l yfollowing theincident, New York'snewly electedAttorney General,Eliot Spitzer,contacted theTreatment AdvocacyCenter. He wasseeking a means of helping bothindividuals with brain disorders and thecommunities where they live. TheTreatment Advocacy Centerrecommended that the Attorney Generalpursue passage of a comprehensiveassisted outpatient treatment law for NewYork. On January 28, 1999, the AttorneyGeneral announced his proposal forstatewide assisted outpatient treatment andacknowledged the assistance provided bythe Treatment Advocacy Center in craftingthe bill.

The Treatment Advocacy Center alsopartnered with Kendra Webdale's family,who, as a tribute to Kendra, were seekinga way to improve the quality of life forindividuals who suffer from severe mentalillnesses and their communities. Theyenthusiastically supported the bill andallowed it to be named "Kendra's Law."

As if Kendra's death was not enough todemonstrate the need for assistedtreatment, more tragedies soon followed.On April 6, 1999, Charles Stevens, a 37-year-old man with untreatedschizophrenia, wearing fatigues andwielding a sword, was shot eight times bypolice on a Long Island Railroad train.Remarkably, he lived.

On April 28, 1999, Edgar Rivera, a 36-year-old father of three young children,was pushed in front of a subway train by aman with untreated schizophrenia. Mr.Rivera lived, but lost part of his legs. Mr.Rivera, like the Webdales, showedcompassion for his assailant. At thehospital he said, "I have no legs, but atleast I have my mind. This guy doesn'thave that. I think I'm ahead."

The Treatment Advocacy Centerapproached the Rivera and Stevensfamilies and found that they, too,enthusiastically supported Kendra's Law.Kendra Webdale's family, Charles Stevens'family, and Edgar Rivera and his familyjoined forces with NYTAC and theTreatment Advocacy Center to advocatefor Kendra's Law. The Center for theCommunity Interest also played a vitalrole in the campaign.

From then on, momentum for passagestarted building.

The families set out on meetings withnewspaper editorial boards, reporters andlegislators. While support from theconservative media was expected, supportfrom New York's more liberal media wasnot. Major breakthroughs occurred whenthe New York Times and Newsday, two

Governor George Pataki (R-NY) with Treatment Advocacy CenterBoard member, DJ Jaffe, after press conference announcing

agreement to pass Kendra's Law on August 3, 1999

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Catalystliberal publications, joined conservativepublications like the New York Post andDaily News in support of Kendra's Law. Infact, New York's six largest newspapers allenthusiastically supported Kendra's Law.The numerous letters written by NYTACmembers no doubt contributed to thissuccess.

The Webdale family arrangedmeetings with Republican GovernorGeorge Pataki's counsel and invited theTreatment Advocacy Center to attend.Following the meetings, Governor Patakijoined the effort to pass Kendra's Law.Democratic Assembly Speaker SheldonSilver announced his support of Kendra'sLaw with Attorney General Spitzer in apress conference on May 19, 1999, andinvited the Stevens, the Webdales, and theTreatment Advocacy Center. The sameday, Governor Pataki introduced a slightlydifferent version of Kendra's Law.

The slight differences in the billsprovided an opportunity for opponents totry to divide and conquer. A furthercomplication was that the legislaturebecame engaged in a protracted battle overthe state budget. However, the TreatmentAdvocacy Center, NYTAC members, theWebdale, Stevens and Rivera families keptthe pressure on and continued to build itscoalition. In June the New York StateAssociation of Chiefs of Police passed aMemorandum in Support of Kendra's Law.

The efforts culminated on August 3,1999, when Treatment Advocacy Centerstaff, the Webdales, and Mr. Riveratraveled to Albany to hold a pressconference to beseech the Governor andthe legislature to enact Kendra's Law.Shortly before our press conference wasscheduled to begin, the Governorannounced that a political agreement topass Kendra's law had been reached. Onehour later, Governor Pataki and leaders ofthe State Senate and Assembly held theirown press conference announcing thatthey reached an agreement to passKendra's Law. The bill subsequentlypassed the legislature by an overwhelmingmajority (Senate 49-2/Assembly 142-4)and was signed into law on August 9,1999.

The efforts to pass Kendra's Law shedlight on the failures of the mental illnesstreatment system in New York. As a result,Kendra's legacy is even more thanbringing assisted outpatient treatment to

New York. On November 9, 1999, Governor

Pataki announced that he is halting thedecades-old failed deinstitutionalizationpolicy in New York. The Governorproposed infusing an additional $125million in the budget for community-based services, of which $52 million isearmarked for assertive communitytreatment, and $20 million will create2,000 new supervised housing units. Thisbrings the Governor's total commitmentfor increased budget allocations this yearto $420 million for community treatment,supervised housing, and implementationof Kendra's Law. The Governor is alsosuspending the push to eliminate 2,300 ofNew York's existing 6,000 inpatientpsychiatric hospital beds (down from96,664 beds in 1955).

It is sad that years of efforts byrelentless mental health advocates like DJJaffe to secure the benefits of assistedoutpatient treatment for citizens withsevere mental illness had previouslyyielded such meager results. It is alsodiscouraging that tragedies and concernsabout public safety became the catalysts tomake Kendra's Law a reality. However, itis a lesson about the importance ofadvocating outside the traditional mentalhealth arena and involving those with aninterest in public safety and the victims ofuntreated mental illness. The bill clearlywould not have passed had it not been forAttorney General Eliot Spitzer, theWebdales, the other families, the Centerfor the Community Interest, and theTreatment Advocacy Center.

In the end, Kendra's Law will benefitindividuals with severe mental illnessesbecause treatment will finally beaccessible to those who need it most.Achieving that goal is the only hope ofending the senseless tragedies that makeheadlines; the ones that are responsible forcreating stigma against individuals withbrain disorders. It is the first real prospectof a better quality of life for individualswho are most ill with these devastatingdiseases of the brain.

[Note: Visit www.psychlaws.org(State Activity/NY) for a copy ofKendra's Law and the TreatmentAdvocacy Center's summary, A Guideto Kendra's Law.]

Kendra's LawAt Work

As of June 1, 2001, 1119assisted outpatient treatmentorders—each of which bylaw must provide for eitherassertive community treat-ment teams or intensive casemanagement—had beenissued under Kendra's Law.Investigations not leading toorders had resulted inenhanced services for anadditional 813 people in needof treatment.

Based on preliminaryfindings for the first 141people in assisted outpatienttreatment (as of January2001), those in the Kendra'sLaw program haveexperienced a:

129% increase inmedication compliance;

194% increase in casemanagement use;

107% increase in housingservices use;

67% increase in medica-tion management services use;

50% increase in therapyuse;

26% decrease in harmfulbehavior; and

100% decrease in home-lessness.

Sources:New York State Office of Mental Healthweb site: www.omh.state.ny.us,Statewide AOT Report as of June 1,2001 (viewed June 19, 2001). New YorkState Office of Mental Health, ProgressReport on New York State's MentalHealth System (Jan. 2001), pp. 16-18.

Refusing to Settle forPigeon Research

Despite a promise "to continuephasing out questionable orirrelevant research," the NationalInstitute of Mental Health(NIMH) continues to fund asmany research grants for the studyof pigeons as it funds to study theclinical or treatment aspects ofmanic-depressive illness. We mustrefuse to settle for pigeon researchwhen so much rides on NIMHaccomplishing its mission to "reducethe burden of mental illness throughresearch."

On September 6, 2000, theTreatment Advocacy Center releasedMissions Impossible: The OngoingFailure of NIMH To SupportSufficient Research on Severe MentalDisorders.1 This report documents thatonly 22.1 percent of NIMH’s 1999research grants were related to the mostsevere disorders. Even more glaringly,only 8.3 percent of the institute’sfunding went to the clinical or treatmentaspects of these illnesses.

Missions Impossible compares thenumber of NIMH research grants forschizophrenia, manic-depressive ill-ness, severe depression, and othersevere mental disorders with thenumber of NIMH grants for the study ofpigeons, songbirds, fish, and crickets.The report exposes how NIMH has alsolost track of its primary mission throughits allocation of substantial researchresources to human and social problemsthat are the responsibility of othergovernment agencies.

A review of 1,349 new researchgrants funded by NIMH revealed that:

For schizophrenia, which affects 2.2million adult Americans, NIMHapproved 110 new research grants,including 35 related to clinical andtreatment aspects. At the same time,NIMH funded more than 110 othergrants on subjects that should have beenassigned to other divisions of theNational Institute of Health (NIH), suchas the National Cancer Institute.

For major depression, which affects9.9 million adult Americans, NIMHapproved 120 new research grants,including 57 related to clinical ortreatment aspects. At the same time,NIMH funded more than 120 othergrants that should have been assigned toother government agencies outside ofNIH, such as the Department ofEducation.

For manic-depressive illness, whichaffects 1.6 million adult Americans,NIMH approved 32 new research grants,including 7 related to clinical ortreatment aspects. At the same time,NIMH also funded 7 new researchgrants to study pigeons.

Despite promises by its leaders torededicate the Institute to itsfundamental mission, MissionsImpossible finds no increaseddistribution of NIMH resources tosevere mental disorders last year ascompared to 1997. It notes that, "Breastcancer, cognitive process of birds,alertness of railway engineers, readingproblems, students' transition to middleschool, adolescent romantic relation-ships, daytime sleepiness, how emotionis perceived in music—there arevirtually no boundaries to what NIMHis currently funding." The reportemphasizes that much of the behavioraland basic neuroscience research beingfunded by NIMH is worthwhile butshould logically be done by theNational Science Foundation and othergovernment agencies. NIMH is onlyable to allocate significant resources tosuch research by neglecting severemental disorders.

The report makes fiverecommendations for improvingthe NIMH research portfolio:

Rapidly and markedlyincrease NIMH researchspending on severe mentaldisorders.

Hold Congressional hearingsto clarify the primary missionand priorities of NIMH.

Merge NIMH with theNational Institute ofNeurological Disorders and

Stroke to create a National BrainResearch Institute.

Change the name of NIMH to theNational Institute of MentalIllnesses, as an interim measure.

Shift large amounts of basicbehavioral research from NIMH tothe National Science Foundation.

Missions Impossible is a call toaction for those with a vested interest inresearch into the nature, treatment andprevention of severe mental illness. TheAIDS movement would neveracquiesce to a similar failure to doAIDS research. Nor would the breastcancer community concede researchfunds that are so desperately needed.We also must refuse to relent in ourdemands for vital research. We mustkeep hope alive. Contact yourrepresentatives in Congress. Tell themnot to let NIMH go to the birds!

[To view the full report online, visit theCenter's web site at: www.psychlaws.org ormore specifically, www.psychlaws.org/nimhreport/index.htm. For copies of thereport, contact the Treatment AdvocacyCenter at 703-294-6001, or by email to:info@psychlaws.org.

1The report is authored by E. FullerTorrey, M.D., President, TreatmentAdvocacy Center; Irving I. Gottesman,Ph.D., Department of Psychology,University of Virginia; John M. Davis,M.D., Department of Psychiatry, Universityof Illinois; Michael B. Knable, D.O.,Stanley Foundation Research Programs; andMary T. Zdanowicz, J.D., ExecutiveDirector, Treatment Advocacy Center.]

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The Duke StudiesThe Duke Studies are the largest andmost respected of the controlledexaminations of assisted outpatienttreatment (AOT). Among thereleased findings of this one yearrandomized trial:

AOT Reduces Hospitalizations:Assisted outpatient treatment formore than 6 months, combinedwith routine outpatient services (3or more outpatient visits permonth), reduced hospitaladmissions by 57% and length ofhospital stays by 20 days.

AOT Reduces Arrests: For asubgroup with a history ofmultiple hospitalizations as wellas prior arrests and/or violentbehavior, the re-arrest rate ofthose in AOT for more than 6months was one-quarter (12 %versus 47%) that of those whowere not under treatment orders.

AOT Reduces Violence:Assisted outpatient treatment ofmore than 6 months combinedwith routine outpatient servicesreduced the incidence of violencein half (24% versus 48%).

Sources:Swartz, M.S., Swanson, J.W., Wagner,R.H., et al: Can involuntary outpatientcommitment reduce hospitalrecidivism? American Journal ofPsychiatry, 156:1968-1975 (1999).

Swanson, J.W., Borum, R., Swartz, M.S.,et al: Can involuntary outpatientcommitment reduce arrests amongpersons with severe mental illness?Criminal Justice and Behavior, Vol. 28,No.2: 156-189 (2001).

Swanson, J.W., Swartz, M.S., Borum, R.,et al: Involuntary outpatientcommitment and reduction of violentbehaviour in persons with severemental illness. British Journal ofPsychiatry,176: 224-231 (2000).

Model Law for AssistedTreatmentby Jonathan Stanley, J.D., AssistantDirector

Released in 2000, the TreatmentAdvocacy Center's Model Law forAssisted Treatment is a cautiouslyconsidered proposal to promote theprovision of care for those who need itbecause of the effects of severe mentalillness. At the same time, the Model Lawincludes numerous overlappingprotections to safeguard those undercourt-ordered treatment and to ensure thatonly those for whom it is appropriate areplaced or remain in assisted treatment.

The Model Law is more remarkablefor what it is not than for what it is. Itincorporates a host of substantive andprocedural mechanisms common tocurrent laws for securing treatment forthose overcome by mental illness.

A cursory examination may give theimpression that the Model Law maintainsthe status quo when it is actually acompilation of the most effectiveprovisions of existing state laws.Variations of virtually all of thisproposal's sections are the current lawsomewhere in the United States. Inessence, we have combined each of thebest available components into a statutorymodel better than any currently in effect.

Only in one area have we dared to becreative: the protection of the rights andwell being of those placed in assistedtreatment. There we put forth proceduresmore extensive and vigilant than thosenow in place anywhere in the nation.

Following is a description of some ofthe key aspects of the Model Law.

STANDARDSIn developing a system to place

individuals in psychiatric care, the mostcrucial question is, "When is such anintervention appropriate?" In addition tothe common treatment eligibility criteriabased on being a danger to self or others,the Model Law sets out two additionalstandards that can justify assistedtreatment.

1. Chronically disabled: Only a fewstates have criteria designed to helppeople stuck in the "revolving door" ofrepeated hospitalizations, symptomatic

behavior, and, for many, incarcerations."Chronically disabled" allowsconsideration of possible harm to a personwith symptomatic mental illness in lightof past psychiatric history (which wouldinclude previous non-compliance withtreatment), current likelihood of treatmentcompliance, and the risk of deteriorationwithout treatment.

2. Gravely disabled: A number ofstates have included "gravely disabled" asgrounds for treatment placement. Most ofthese laws define this condition as when aperson becomes so incapacitated bymental illness as to lose the ability toprovide for his or her basic needs, withthese normally delineated as food,clothing, shelter and, sometimes, medicalcare. The Model Law mimics the moreprogressive of the jurisdictions withgravely disabled criteria by explicitlyincluding someone who is likely to suffersignificant harm without treatment.

Incapable of making an informedmedical decision: While not anindependent ground for treatmentplacement, the "gravely disabled" and"chronically disabled" criteria each alsorequires that the person is either unawarethat he or she is ill or is otherwiseincapable of making rational decisionsconcerning proposed treatment. Non-dangerous individuals who are capable ofmaking informed medical decisionsshould not be placed in assisted treatment.

PROVISIONS PROMOTING CLINI-CAL AND JUDICIAL EFFICIENCY

Many provisions of existing assistedtreatment laws make little sense. Theydelay needed treatment, are inefficientfrom either a judicial or clinicalperspective, or are concepts from otherareas of law ill tailored to assistedtreatment proceedings. The Model Lawadopts procedures from various states thatpromote both clinical and judicialefficiency.

Combined Commitment andTreatment Proceedings: Although acommon practice, the disadvantages ofhaving separate hearings on whether aperson should be committed and on his orher capacity to refuse treatment are patent.Having an interval between rulings oncommitment and treatment produces theinherently cruel circumstance of medicalprofessionals having to confine a

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Catalystpsychotic or delusional patient withoutbeing able to provide treatment. Under theModel Law, the judicial determinationsabout treatment placement and the abilityto refuse treatment are made in the samehearing. There is no reason either logicallyor constitutionally, that both decisionsshould not be made concurrently.

Psychiatric Treatment Board: Mosttimes, the decisions of whether or not toplace a person in treatment and, if so, whattype of care is most appropriate are left toa judge with little experience with orunderstanding of mental illness. TheModel Law's decision-maker is ajudicially empowered panel made up of alawyer, a physician and a person who hasdemonstrated experience, eitherpersonally or through a close relative, withmental illness.

Treatment plans: Extensive servicesmay be included in an assisted treatment

order providing for treatment on anoutpatient basis. A treatment plan ismandatory for a person being dischargedfrom assisted treatment.

PROVISIONS PROTECTING CON-SUMER AND FAMILY RIGHTS

Where the Model Law doessubstantially depart from existing statelaws is in enhancing the rights guaranteedto people with mental illness placed inassisted treatment and the rights of theirfamilies.

Family rights: Under the Model Law,relatives may, under certaincircumstances, become actual parties tothe assisted treatment proceeding, with theright to have counsel, present evidence,cross-examine witnesses, and appeal.When bringing a petition, family membersare also eligible for the assistance ofdesignated counsel.

Consumer rights: The Model Lawhas an extensive number of protections forthose placed in assisted treatment.Subjects of assisted treatment petitionshave the rights delineated in most statelaws, i.e., designated counsel, presenta-tion of witnesses, to appeal, not havingplacement in treatment not otherwiseaffect one's legal status, etc. Additionally,the Model Law introduces two novelprocedures. Included is a formal grievanceprocedure whereby patients can bringcomplaints to the facility's medicaldirector and, if necessary, to thePsychiatric Treatment Board. Perhapseven more significantly, the Model Lawcalls for the examination of a personplaced on inpatient assisted treatment formedication side effects every thirty daysby a psychiatrist or physician other thanthe one treating him or her.

1. Mandatory outpatient treatment, properly implemented,can be useful as part of a program of intensive outpatientservices to improve compliance, reduce rehospitalization ratesand decrease violent behavior among a subset of the severelyand chronically mentally ill.

2. Mandatory outpatient treatment should be available tohelp prevent relapse or deterioration for patients who currentlymay not be dangerous to themselves or others but whoserelapse would predictably lead to sever deterioration and/ordangerousness.

3. Predictions about the likelihood of relapse,deterioration, and/or future dangerousness to self or othersshould be based on the occurrence of such episodes in therecent past.

4. Mandatory outpatient treatment should be available topatients who as a result of their mental illness are unlikely toseek or comply with needed treatment, but not just those wholack insight.

5. Studies show mandatory outpatient treatment is mosteffective when it includes intensive services, such as theassertive community treatment or intensive case managementmodels. States adopting mandatory outpatient treatmentstatutes must assure that adequate resources are available.

6. Studies show that long-term mandatory outpatienttreatment (i.e. at least 180 days) is most successful. Mandatoryoutpatient treatment statutes should authorize initialcommitment periods of 180 days and should permit extensionsbased on specified criteria demonstrated at regularlyscheduled hearings.

7. Thorough medical examination should be a requiredcomponent of mandatory outpatient treatment since manypatients also suffer from medical illness and substance abusedisorders.

8. Clinicians must be involved in the decision-makingprocess to assure that the proposed treatment plan is feasibleand appropriate. The judge should ensure that therecommended treatment is available through the proposedprovider before issuing an order.

9. Patients should be consulted about their treatmentpreferences and should be provided with a copy of themandated outpatient treatment plan.

10. Mandatory outpatient treatment statutes should containspecific procedures for patient noncompliance (i.e.empowering law enforcement officers to bring non-compliantpatients to a treatment facility for evaluation and specificprovisions for a court hearing if patient's noncompliance issubstantial and informal efforts will not likely motivatecompliance).

11. Psychotropic medication is an essential part oftreatment for virtually every mandatory outpatient treatmentpatient and the expectation that a patient take such medicationshould be clearly stated in the treatment plan. The APAresource document makes no recommendation about whethermandatory outpatient treatment statutes should either permitor preclude forced medication. If forced medication ispermitted, it should be allowed only if a court specificallyfinds that the patient lacks the capacity to make an informeddecision regarding his or her need for the medication.

American Psychiatric AssociationResource Document on Mandatory Outpatient Treatment

Summary of Conclusions and Recommendations

most important right of all.[Cindy Soto Is the Founder of Sierra's

Light Foundation, a Group Dedicated toMaking Preschools Safer forChildren.]

What Do ConsumersReally Think AboutAssisted OutpatientTreatment?by J. Nelson Kull, III

I would like to discuss two issues:political correctness and paternalism.These issues are on my mind as a result ofthe debate in Florida about outpatientcommitment or as it is now called,assisted outpatient treatment.

I began responding to questions aboutthis issue at least a year ago, maybe two.I spoke against it vehemently at a focusgroup of advocates and governmentofficials, including state legislativestaffers. I talked about all the usualreasons for opposing it. It was stated atthat meeting that it would criminalize thementally ill. It would interfere with trustbetween consumers and providers. Itwould clog up our system by givingpriority to court-ordered patients so thatthey would displace people coming intothe system from the traditional civilsystem. I went on to talk aboutconstitutional rights. I may have evenquoted one of the founding fathers:

"Those who would trade freedomfor security deserve neitherfreedom nor security."

—Benjamin Franklin

People present at some of thosediscussions accused me of using highrhetoric. Looking back at it, I may have.

I have now read in excess of 300pages on the topic. Here are some of myobservations: Many, if not most, stateshave some type of outpatientcommitment law. Yet the problemspredicted above do not seem to beapparent. Most people in most statesnever have cause to get involved inoutpatient commitment. They probablydo not even know what their state lawsays. I find it hard to understand how, ifthe above problems were true, why do wehear so little about them?

Mandate Treatment forMentally Ill By CINDY SOTO(reprinted from Los Angeles Times, January27, 2001 with permission of the author)

Last May, Steven Allen Abramsintentionally ran his 4,000-pound Cadillacinto a Costa Mesa preschool, killing twochildren and injuring five others. Three-year-old Brandon Wiener was trappedunderneath the vehicle. His mother, Pam,screamed as he was freed and rushed tothe hospital. About an hour later, he diedin his mother's arms.

Her small body broken and her skullcrushed, four-year-old Sierra Beth had noneed of a hospital. She was killedinstantly.

Sierra was my daughter. As I droveonto the scene, disbelief surrounded meeven before I was told my daughter wasdead. After, I went into shock. My life wasover. My beautiful, sweet, loving childwas gone, forever.

Abrams was mentally ill. Although heexacerbated his illness by years of drugabuse, he was nonetheless sick and in needof treatment.

As the insanity phase of his trialunfolded, I was shocked and appalled tohear of the countless times Abrams hadbeen in and out of treatment and in and outof a doctor's care, only to be released backinto the community unmonitored. Hisrefusal to comply with voluntarytreatment and to take medication, exceptwhen he was made to, shows that he wasnot capable of making rational treatmentdecisions. He also had a history ofviolence and instability, which suggestedthat he was capable of future violence.

Abrams was a time bomb waiting toexplode. He did.

In California, individuals are noteligible for involuntary treatment unlessthey present an imminent danger tothemselves or others. Such treatment,when it occurs, is usually short-term andin an inpatient setting. This leaves agaping hole in California's treatment ofthe mentally ill. There are voluntarycommunity programs and much-neededsteps being taken to strengthen thoseprograms.

But, these voluntary programs fail toaddress individuals such as Abrams, whohad access to care, but could not or would

not comply with treatment. In order tohelp someone like Abrams, Californianeeds a form of involuntary treatment thatincludes evaluating the history of anindividual and, where appropriate, legallymandating that the noncompliant personstay in treatment once out of the hospital.

This care would allow the individualto continue to recover as well as to safelylive and work in the community.

There are those, like the ACLU, whobelieve that mandated treatment infringeson the civil rights of the individual. WhileI understand their concern, I pose to themthis question: "Should the rights of anindividual who refuses to comply withtreatment, who has a severelydeteriorating condition, and who has ahistory of becoming violent when in sucha condition, supersede the rights of myfour-year-old daughter to live safely in hercommunity?" I'd answer, "No."

Many times mentally ill individualsharm themselves when their illnessrenders them incapable of making sounddecisions with regard to their own care. Itis not in their best interest to end uprepeatedly hospitalized or jailed. Civilrights become a hollow exercise underthese conditions. If people overwhelmedby severe mental illness, like Abrams,were instead placed in mandatedcommunity treatment, they could get wellenough to knowingly exercise and enjoytheir civil rights. Meanwhile, our right tolive in a safe and secure society would beprotected.

Abrams was unable or unwilling tocomply with treatment. For that, mydaughter, Sierra, and Brandon paid theprice. Mandatory treatment legislation isimportant because the right to life is the

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Catalyst Welcome Issue

Cindy Soto

Another observation: When I begantalking about this issue with my fellowPathways' members and other consumers,it became apparent that they eitherbelieved that the law already existed, insome seldom-used form, or that it should.

I was so surprised that I took someinformal polls. Pathways serves 50 to 60consumers a day. On one day when 22people were present, I explained the topicto the best of my ability and asked them tovote. Twelve people supported outpatientcommitment, seven opposed, with theremainder abstaining. One of theabstainers said he wanted to change to pro,but he is not included in that category.

The next day I polled 10 consumers atPeople, Inc., a peer support group. All 10voted for the pro position.

A couple of days later, I polled 43consumers at Lakeside Alternatives, ourlocal community provider. Twelve polledin favor, one opposed, and the rest chosenot to vote.

Some more observations. This is anissue that people are having muchdifficulty sorting out. A lot of anger isalready being expressed. It is sad whenpeople start questioning one another'smotives and integrity. This often comes inthe form of attacking how the other sidegot their results and their motives.

I will note that both sides have beenguilty of this. However, the traditionalconsumer advocates spend more of theirtime arguing against the other side'smethodology and less giving examples ofactual current events that result from theproposed policies. On the other hand, thesupporters of outpatient commitmentstress events in the news instead ofscientific studies.

What I find really interesting issomething that at first seemscounterintuitive (science talk for "not whatone expects," or different from whatcommon sense would have one expect).What I am talking about is the differencebetween what people I call the "consumerelites or the consumer leadership" and thepeople whom they are supposed to serveand represent. It has often surprised methat people like this who are alwaystalking about tolerance, diversity, andindividualism, are often the most heavilyinvested in political correctness.

Some of these people have actuallysaid to me that they will not allow the use

of language that is not "person first." Theyseem to believe that they have the right tocontrol speech as a method of controllingthought, and I assume reality. To me thebest definition of an ideologue is a personwho is determined to see reality in light ofhis/her ideology, instead of his/herideology in light of reality.

What is offensive is censorship inAmerican society, especially by peoplewho wax eloquently about human rightsand freedom of expression. These peopleclaim to be protectors of diversity and theright to be different. They would no doubtdescribe themselves differently, but likeall who support censorship as serving aspecial purpose. The first principle ofcensorship is that the ends justify themeans. Most wrongs begin with thispredicate.

Political correctness in its true andextreme form is a type of paternalism.That is, one American telling another whatthey can do or say for their, and hopefullyothers, good. Those who have the right tocensor are often self-appointed, orappointed by like-minded who tradelegitimacy for support.

I have attended national conferences inwhich I was disappointed by the lack ofreal diversity. There were people ofdifferent races, religions, national origin,and first languages present. However, toomany people talked like tape recorders.They all seemed to be saying the same

mantra. The professionals,families, government, anddrug companies were allwrong and the consumers arealways right, provided theyconform to politicalcorrectness. There were nodissident views. There wasvery little debate about reallyserious issues where peoplewould have legitimate andserious disagreements such asoutpatient commitment.

I personally like a gooddisagreement. Many of mybest friends introducedthemselves by screaming atme. Hopefully, some of youwill do the same. I find itsuspicious when everyonesounds like the same taperecorder. It is not healthy. Itreminds me of those old films

about communist party meetings whereeveryone always voted unanimously.

Obviously, I am using an extremeexample, but you get the idea. The forcesof political correctness can neverunderstand what the founding fathersintended. The founding fathers neverintended to protect the truth. They were fartoo clever for that. What they intendedwas to create a free market of ideas whereconflicting ideas could compete with freeaccess to the media and the public. Theultimate predicate of democracy is that theaverage citizen is not a fool, and that ifallowed to hear both or all sides of anargument will be able to discern the truthor the most truthful.

If you believe in freedom, you mustfirst believe in free thought and that meansno censorship. If you can be trusted withthe truth, then so can everyone else. Themarket place of ideas works better whenleft open and unregulated by the politicallycorrect or government. Finally, if youbelieve in your cause, then censorshipworks against you. You do not need itsprotection and it gets in the way ofprojecting your own message withindependent credibility.

[Mr. Kull is President, Pathways Drop-In Center, Inc., and a nationally-recognized consumer advocate. Heencourages people to respond andcomment on his article by e-mail atskull3@Earthlink.net.]

Dr. E. Fuller Torrey presenting a lecture for the Man-hattan Institute at the Harvard Club in New York City.

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Catalyst Welcome Issue

Your Voice—Will Make a Difference

[The following letters have been received asletters to the editor and published inCatalyst from September 1998 - June 2001.]

I received your Catalyst and finallyfelt confirmed in my beliefs abouttreatment for persons with severe mentalillness. I have felt like the lone consumeradvocate in my entire state. I testified on12 bills this legislative session, wasinterviewed by newspaper and localnews about a $60 million shortfall in ourmental health state agency—TexasDepartment of Mental Health and MentalRetardation—and its effects onconsumers. I have schizo-affectivedisease and am on 5 different meds andwouldn't have it any other way now that Ican function more independently.

I just got a job at our state NAMIaffiliate and I am so excited, for it is myfirst "real" job in 20 years. I also givespeeches (graduate classes at Universityof Texas, training mental health staff atthe state hospital, disabilityorganizations, conferences). I just gave aspeech two weeks ago at our state NAMIConvention and received a standingovation. Words cannot even describehow proud I felt about myself for the firsttime in my entire life.

I find it more than coincidental thatthe very day I read your newsletter, Ireceived an e-mail bashing yourorganization and claiming that PACTdoes not work and is forced treatment. IfI weren't committed and/or forced to gointo the hospital, I would be dead. Nodoubt in my mind.

I am glad to know you are out thereworking for the good of all involved withmental illness.

Diana Kern, Austin, Texas

Keep up the wonderful work. Iappreciate the Catalyst. As president of alocal NAMI affiliate, with my phonenumber circulating around the area, Ireceive calls every week from peopleseeking information and supportconcerning an ill family member. By farthe most frequent issue is trying to get apsychotic person to accept treatmentBEFORE harm is done. I now give them

information about TAC and urge them tosupport the organization, even though itcan't help them with their immediateproblem. Locally, we have some bigchallenges to getting treatment for peopleagainst their will.

Also, could you send me 20 copies ofthe Catalyst? Either issue is fine, but thefirst has so much basic information in it,that would be great for a starter. I want togive copies out at our next Board meetingof our local affiliate and do apresentation. Then, I want to have copiesavailable for people who call me.

Thank you, thank you, for yourwonderful work!

Alice Fitzcharles, Media, PA

Just a short note to convey myappreciation for the work you do. As youknow, I have been trying to piecetogether a working understanding of theissues surrounding mental illness. Duringthis ongoing process, I have come to relyon the Catalyst as one of the greatestsources of innovative ideas andcompassionate commentary on thesubject.

Please convey to all associated withthe publication the respects of aninterested third party, who, like so many,is trying to understand why we can't domore for those who are mentally ill andliving on the streets.

Robert L.E. Egger, DirectorDC Central Kitchen, Washington, DC

Has the second edition of the Catalystbeen released yet? My sick son read thewhole thing and asked me when the newone would be out. This is the first time in25 years of illness that he has beeninterested enough to read about hisillness.

A lack of commitment resulted in hislosing control and almost killing me twoyears ago. I believe that he has learnedthat his medicines can prevent somethinglike this happening again. It was too badfor all concerned.

I am trying to get out the word to asmany people as I can.

Thanks for all the help you [Mary]and those working with you are doing.Catalyst is exceptionally well written.

Edna Cramer, Riverside, California

[I cannot tell you how much it means tohear that your son enjoyed readingCatalyst. We will make sure that you andyour son get a copy of the second, and allfuture, issues.—Mary Zdanowicz, J.D.]

I just read the L.A. TimesCommentary by E. Fuller Torrey andMary T. Zdanowicz.

I'm a police officer on LAPD.Southern California is home to a highnumber of mentally ill who are homelessand to those who are adult children stillliving with and frightening their parents.

Every day officers in my divisionrespond to a call involving such asubject. It is discouraging to be able to donothing more than stand there with myhands in my pockets because currentlegislation doesn't allow much more.

I cannot put handcuffs on a personand take away his liberty withoutprobable cause to arrest or without clearguidance from California's Welfare andInstitution Code. If I do, I lose MYliberty, my house, etc..

When a parent insists I take his sonaway because he refuses to take hismedication and is acting out I can onlysuggest they consult their doctor—thatthe family is responsible.

Cuts in state funding the last fewyears have forced many cases away frommental health professionals into the lapsof police officers. Most of these officersare young, and have only a high schooleducation and cursory classroominstruction in how to handle the mentallyill.

I continue to hope that, with our"booming economy" some funding canbe found to give more help where it'sneeded. Thank you for your hard work!

Richard Andert, West Hills, CA

In your July/August 2000 Catalystyour first article on the Model Law sayshospital admissions fell after theadoption of need for treatment laws inTexas. I asked my psychiatrist about thisbecause I always worry about returningto homelessness like over 15 years ago inMichigan. My psychiatrist said thatTexas judges were more than reluctant touse current law to commit and forcetreatment on patients. No wonder

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Catalyst Welcome Issue

hospital admissions have fallen. I feltsafer back in Michigan because I knew ifI deteriorated that I would be re-hospitalized whether or not I wasdangerous to myself or others. Mypsychiatrist said Texas judges were evenreluctant to commit under the standardsof dangerousness. So what do we doabout judges who won't use the law? Ihave more job possibilities here in Texasand the climate is more conducive to myhealth that I hesitate to move back toMichigan. Fortunately, I have not beenhospitalized or severely symptomatic inover 8 years. Assisted treatment doeswork, it just requires more than a quickinvestment. Once homeless, I now workfull time as a research technician at theBaylor College of Dentistry. I see thepsychiatrist only every three months. Weneed a federal approach to mental healthrather than this state-by-state piecemealapproach to treatment.

Petra Moessner, Dallas, Texas

I cannot tell you how delighted I amto receive a copy of the Model Law forAssisted Treatment. If in place years agoit would have saved my daughter fromtwo years as a homeless mentally illperson in Dallas and five years homelessin Norman, Oklahoma, etc. She is now54 years old; lives in an apartment inNorman with her cat; is unable to care forherself without help, no meds, cannotwork; fully delusional, refuses treatment;does not believe she is ill.

The direction TAC is going is

appropriate to me. I did volunteer inOklahoma for NAMI-OAMI legislationfor eight years, so I really appreciatewhat you are doing. As I am now 83, Icannot do much, but I can pass theinformation along.

Mary Main, Dallas, TX

Thank you for sending me thebooklet, “Model Law for AssistedTreatment.”

My 23 year old daughter has beendiagnosed with schizoaffective disorderand lacks any insight into her illness.Over the last year and a half she has beenhospitalized 12 times. If your model forassisted treatment existed, it would havemade a tremendous difference in the typeof care my daughter received over thisperiod of time.

I am a member of the Board ofDirectors of NAMI Bucks County inPennsylvania, the secretary of a NAMIFamily Advocacy Group whose primarygoal is to establish PACT programs inour county, and a family member on theadvisory board of a new CommunityTreatment Team in Penndel,Pennsylvania. I would like to distribute"Model Law" to as many people aspossible. Please send me one or twodozen copies.

I am also enclosing a check that is adonation to your organization.

Thank you for all of the dedicationand hard work of TAC. I look forward toreceiving all of your emails and updates.

Jeanette M. Pulley, Newtown, PA

I just came across your [web] site in myongoing self-education about mental healthissues, and I wanted to make the followingcomments:

I've been involved in civic/governmentalactivism for over 20 years, working primarilyto help people understand the importance ofgetting involved and influencing the decision-making process of the governmental process.One of the many social phenomena I'veobserved is the extent to which people areresistant to be "public" about their opinionsand activities. I have been successful inovercoming that in many of the issues I'vepromoted, getting the public to attendmeetings in numbers sufficient to influencethe outcomes.

Recently, I've become involved in mentalhealth issues, particularly those surrounding[people with manic-depression]. Theproblems associated with sufferersacknowledging they have a problem, themseeking treatment, and their continued"compliance" are topics I hear and discussfrequently.

It isn't clear to me whether yourorganization has members with actualpersonal experience with these issues, orwhether your organization is simply alegislation advocacy group. Assuming it is thelatter, I would like to suggest that thelegislation you propose will do more harmthan good.

Most people, because of the socialstigmas surrounding mental illness, arefearful of seeking treatment, fearful ofacknowledging that they have a problem, andfearful of the repercussions a diagnosis ofmental illness will have on their jobs andfamily. Now you propose to add the fear ofinvoluntary treatment. Of involuntary"guardianship." And you openly state that this"involuntary treatment" should be imposed"...BEFORE individuals become a danger tothemselves or others."

With what you propose, WHY wouldANYONE who even suspects they have amental health problem even SEEK treatment,thus making themselves vulnerable to"involuntary treatment?"

Clear-thinking people with minorproblems will be scared away from seekingappropriate treatment, but imagine how yourapproach would be viewed by the fearful, thedeluded, the paranoid? Would the fear of yourproposal actually INCREASE violence, as

Left to right: Risdon Slate, Ph.D., Associate Professor of Criminology, FloridaSouthern College; Dr. E. Fuller Torrey, President, and Mary T. Zdanowicz, J.D.,Executive Director, Treatment Advocacy Center; presenting a workshop at theNational Sheriffs' Association Annual Conference in Kansas City, Missouri.

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Catalyst

untreated, extremely ill people areapproached by either innocent passers-by orcivil servants, who are viewed as enforcers ofyour policies?

Fearful and confused people needreassurance that they will be listened to, thattheir particular problems will be heard andacted on in a compassionate manner. Anysuccessful hostage negotiator will confirmthis. Forcing people into positions that arefixed and undesirable to them creates a "no-win" situation, and they often react with a"nothing-to-lose" approach.

I believe your intentions are wellmeaning, but appear to be a bit reactive torecent media stories. I have worked with themedia on stories for approximately 15 years(some of which aired globally), have writtenpress releases, and organized a number of"media events." I am fully aware the extent towhich the public and decision-makers can beswayed by dramatic reconstructions ofcurrent events. From my research into thisissue, it appears your proposal relies heavilyon the emotional and reactionary elements ofthe public's fear and misunderstanding ofthose suffering with mental illness.

It will be a relatively simple effort tointerview a number of people whose liveswere ruined by their MISDIAGNOSIS,people who lost everything, even the familiesof people who have died as a result of such"treatment." Dramatic presentations of"Reality" work both ways!

The mentally ill need to beENCOURAGED to seek treatment, notdriven from it by the fear your proposalgenerates.

Few would argue against forcing thosethat have demonstrated their violentbehaviors [into treatment], but existing lawsare ALREADY in place to address thatproblem.

Given my history of activism, and interestin this issue, I stand ready to prepare a publicpresentation to be distributed to both themedia and appropriate lawmakers. I would bevery interested in your thoughts.

Thanking you in advance, Tyler

[Note: The following response is from JonStanley, Assistant Director, TAC]

Dear Tyler: It was kind of you to developand share your thoughts.

Your concern about some peoplebecoming reluctant to utilize voluntary

services if treatment laws are reformed islegitimate. Our views, however, differ as tothe extent of that effect (if any) relative to thevalue of rational treatment laws.

Allow me to explain my assessment. One of the two main reforms we promote

is the need for treatment standard. The peoplewho would qualify for treatment under suchcriteria are already refusing care. There is nofear of alienating them from treatment. Theyalready have been by the symptoms of theirillnesses. Many thousands who do not gethelp now pursuant to the dangerousnessstandard end up homeless, in jail, or takingtheir own lives. I see great value in helpingthem.

We also promote the adoption and use ofassisted outpatient treatment, which reduceshospital days, promotes treatmentcompliance, decreases subsequentadmissions, and reduces violence. It wouldallow some people treatment in thecommunity rather than an inpatient facility. Isee value in doing all those.

Your claim that legal reform will detertreatment participation makes logical sense,but there is a dearth of research in this area.Some outpatient commitment studies,however, show that people under treatmentorders are more likely to maintain treatmentafter the order expires. I also know that thePolicy Research Associates study of the pilotoutpatient commitment program at Bellevuefound no significant difference in the level ofcoercion perceived by those who were incourt-ordered treatment and those who werenot.

The changes we seek are already in manystates. Forty-one have assisted outpatienttreatment. About half have some type of needfor treatment standard. We are in touch withhundreds of people all over the country. Wehave not heard of people shunning treatmentbecause of these progressive laws. Plus, manyof these have been around for decades. It issurprising that research has not emergeddemonstrating the connection betweentreatment law reform and treatmentavoidance.

I also know that my own experience is notunique. I refused treatment for almost threeyears after being diagnosed with bipolardisorder, all the while sinking into anincreasingly dramatic symptomatic spiral. Iwas eventually placed in treatment against my"will." And because I was—I got better. I am

now religiously faithful to my treatment. Anintervention has made me more likely to seektreatment.

All this information is not sufficient for adefinite conclusion, but it is enough to becertain that I do not know the effect oftreatment laws on voluntary selection oftreatment. Combine that with the vitalbenefits of treatment law reform, and youhave why I share your concern but not yourconclusion. I wish you luck in your advocacyefforts.

States continue to gaininterest in outpatientcommitmentby Rosanna Esposito, Attorney, Treatment Advocacy Center

The National Conference ofState Legislatures and HealthPolicy Tracking Service recentlyreleased their 2001 HealthPriorities Survey. The bookcompiles polling informationfrom state legislators, legislativestaff, governors' offices,executive agencies and otherstate health sources in order "toidentify their legislativepriorities."

The results show a dramaticincrease in the number of statesinterested in outpatient commit-ment. Last year just nine statesidentified the issue as alegislative priority (Catalyst, Vol.2 No. 1, January/ February 2000).In the 2001 survey, the following30 states responded thatoutpatient commitment is alegislative priority:

Alaska, Arizona, California,Connecticut, Florida, Hawaii,Illinois, Massachusetts, Michi-gan, Minnesota, Mississippi,Missouri, Montana, Nebraska,New Hampshire, New Jersey,New Mexico, New York, NorthCarolina, Ohio, Oklahoma,Oregon, Pennsylvania, RhodeIsland, Tennessee, Texas,Virginia, West Virginia, Wash-ington and Wisconsin.

Schmidt, 349 F. Supp. 1078 (1972),vacated, 414 U.S. 473 (1974), on remand,379 F. Supp. 1376 (E.D.Wis. 1974),vacated, 421 U.S. 957 on remand, 413 F.Supp. 1318 (E.D.Wis. 1976), challengedWisconsin's civil commitment statute andfocused primarily on the process of civilcommitment. The real import of theLessard decision was that it introduced theconcept of imminent danger in treatmentdecisions. But, as often happens, thisconcept was not interpreted as the courtoriginally intended. In Lessard, the courtheld that there must be a finding ofimminent danger to oneself or others"unless the state can prove that the personis unable to make a decision abouthospitalization because of the nature of hisillness." Unfortunately, the qualifyingstatement referring to lack of insight wasignored.

The practical effect of the Lessarddangerousness standard has beendevastating and can be directly related tothe phenomenon of criminalizingindividuals with mental illness. In the twoyears following the Lessard decision, thenumber of criminal observation cases inthree Wisconsin state institutions affectedby the decision nearly doubled, from 200cases before the decision to 367 cases afterthe court articulated the dangerousnessstandard.

The Supreme Court's 1975 decision inO'Connor v. Donaldson, 422 U.S.563(1974) is commonly cited as establishing astandard of dangerousness for civilcommitment. The Donaldson caseinvolved a non-dangerous mentally illperson who was confined to a psychiatrichospital without receiving treatment. TheSupreme Court held in that case that "aState cannot confine without more, a non-dangerous individual who is capable ofsurviving safely in freedom by himselfwith the help of willing and responsiblefamily members or friends." It is thephrase "without more" that is soimportant. The common interpretation isthat it should be read "without more thandangerousness." However, read in context,it is clear the Court meant "without morethan custodial care."

In fact, early in the decision, the Courtspecifically states that its opinion does notaddress "whether the State maycompulsorily confine a non-dangerous,

mentally ill individual for the purpose oftreatment. "We need not decide whether,when, or by what procedures, a mentallyill person may be confined by the State onany of the grounds which, undercontemporary statutes, are generallyadvanced to justify involuntaryconfinement of such a person—to preventinjury to the public, to ensure his ownsurvival or safety, or to alleviate or curehis illness." This is an incrediblyimportant distinction because the Courtdid not foreclose the use of commitmentstandards based on the need for treatment.

Despite the absence of a prohibitionagainst the use of need for treatmentstandards in the law, most state treatmentlaws are based on dangerousness alone.Several states have abandoned dangerous-ness as the sole standard upon whichinpatient treatment decisions are based.The states that have done so, haveincorporated the following factors intotheir standards in different combinations:

Probability of deterioratingsymptoms that will result indangerousness.

Incapacity to make an informedtreatment decision.

Likely to benefit from treatment.

History of a need for treatment.

Exhibiting symptoms thatpreviously resulted in the need fortreatment.

Needs treatment to preventdeterioration of symptoms.

Standards based on the need fortreatment allow for a medical interventionbefore an individual spirals to the depthsof their illness. Critics charge thatreforming the standard for treatment willserve as a dragnet, dramatically increasingthe number of individuals who arehospitalized and shifting resources awayfrom community treatment. Experienceproves that there is no basis for suchalarmist claims. In December 1996,Wisconsin adopted a standard based onthe need for treatment and none of thosedire consequences occurred. There wereonly 35 requests for commitment underthe new standard in the 22 monthsfollowing its adoption.

Despite all that we now know about

the benefits of treatment and devastatingconsequences of non-treatment, themental health bar is still actively engagedin an assault on rational treatment laws.The Vermont Protection and AdvocacyInc. filed a lawsuit this year, whichdelayed the implementation of a new lawthat would have made outpatientcommitment more effective in Vermont.In its Position Statement on InvoluntaryCommitment, the Bazelon Center forMental Health "opposes all involuntaryoutpatient commitment as an infringementof an individual's constitutional rights."

Despite their efforts, the climate isfinally ripe for reform. Several notablecases (Theodore Kaczynski, MichaelLaudor, Russell Weston, and AndrewGoldstein) have caused the media toexplore the nature of mental illness, theconsequences of non-treatment and ameans of preventing these tragedies. Cityleaders are looking for a solution to thedecades old problem of the homelessmentally ill. Jailers are beginning to askwhy the care of the mentally ill has beenshifted to their budgets. The families ofthose suffering from mental illness aredemanding that legislators untie theirhands and enable them to get care for theirloved ones before it is too late.

The Treatment Advocacy Center andthe Catalyst will be resources for thoseseeking to effectuate reform. Regretfully,it is too late for Scott, and too many otherslike him, forced to suffer the consequencesof non-treatment. The Center willcontinue to ask, as did Herschel Hardin, aformer member of the board of directorsof the British Columbia Civil LibertiesAssociation and father of a child withschizophrenia:

"How can so much degradationand death—so much inhumanity—be justified in the name of civilliberties? It cannot. The oppositionto involuntary committal andtreatment betrays a profoundmisunderstanding of the principal ofcivil liberties. Medication can freevictims from their illness—freethem from the Bastille of theirpsychoses—and restore theirdignity, their free will and themeaningful exercise of theirliberties."

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Catalyst Welcome Issue

(continued from page 3)

Idealism Gone AwryEXPLORING ORIGINS OF DYSFUNCTION

IN MENTAL HEALTH CARE

by John W. Milton, former State Senator,Co-chair, NAMI-MN LegislativeCommittee

Moved by Ken Kesey's book, OneFlew Over the Cuckoo's Nest, a groupof idealistic, energetic and naïveMinnesota state senators set out in themid-1970s to reform the system ofcaring for the mentally ill. Visits to theold state hospitals confirmed our worstfears: Kesey's book, and the moviebased on it, could just as easily havetaken place here in Minnesota,presumed to be one of the nation'sincubators of progress and reform.

As one of the prime movers in thatgroup, I believed that we werecreating a better alternative to those large,brick-and-stone warehouses where peoplewith brain disorders were managed bypsycho-surgery, electro-shock andnumbing meds like thorazine. Wherepatients—out of sight, out of mind—would live out their lives, and present nodanger to the families and communitieswhich had sent them away.

After all, it was the mid-1970s. Surely,if we could stop the Vietnam War,desegregate the schools, win voting rightsfor African Americans, fight for equalrights for women, improve safety forworkers, and protect the environment, wecould reform the mental health system.And surely, if it could be done anywhere,why not here in Minnesota?

The plan was deceptively simple.Close down the big warehouses. Take themoney saved from that to establishprograms in local communities, wherefamilies and friends would be close athand to support the mentally ill. Replacethe more invasive treatments with family-based therapy and improved medication.In time, we would not only save lives,we'd be saving the taxpayers' money. Itseemed too good to be true.

It was. To begin with, the bureaucracydragged its feet on shifting money andpersonnel to local programs. The stigma ofmental illness produced a backlash inmany communities, where the goodcitizens of Minnesota fought againsthaving "those people" living down thestreet. Payment for services fell more and

more under the control of three giantmanaged care plans, and these, rather thancare providers, decided how much carewas "medically necessary." Localgovernments were inclined to export theirproblems to the state, thus keeping a lid onlocal property taxes. And, state legislatorsof the 1980s and 1990s were mesmerizedby the tangible benefits of cuttingexpenditures and returning money to thetaxpayers. Whatever benefits might resultfrom reform were too intangible and long-term, not relevant to incumbent legislatorswho ran on the short-term benefits they'ddelivered to their constituents.

To make matters worse, when peoplewith brain disorders were liberated fromthe old state hospital system, they wereassumed to be competent to make choicesabout whether to continue treatment. Thefact that nearly half of them suffered fromanosognosia, a condition which renderedthem incapable of recognizing theirillness, was not as well understood as it istoday, and the extreme civil libertarianswere (and still are) unwilling to accept thisas a factor in patients' choice of receivingor rejecting treatment. So in a caring placelike Minnesota, where it is unthinkable tolet a friend or relative with diabetes choosenot to take insulin, where we prevent olderpeople with Alzheimer's from wanderingacross freeways in the dead of winter, wecontinue to insist on letting people withserious brain disorders choose whether ornot to be treated . . . until they deteriorateto the point where they become

"imminently dangerous" to themselves orothers. And then, in most cases, only ifthey are on the verge of, or in the act of,committing some heinous crime.

So, despite the fact that braindisorders strike roughly one in fourMinnesota families, efforts to reform thecommitment process are opposed by theMental Health Association of Minnesota,(inexplicably) the state hospitalassociation, and (predictably) theScientologists, who don't seem to believethat mental illness even exists. To date,this coalition has succeeded in killingevery legislative initiative for reform.

As a result, many of those who wereformerly committed to the old statehospital system are now incarcerated inthe state's maximum-security prisons.They have qualified to receive care bydecompensating and committing violence

to family, friends, or neighbors. Theirstories are captured by the media, living inour consciousness for a day or two, thenfading into the dark corners from whicherupted the violence. Perhaps we'vesimply created a different kind of"cuckoo's nest."

There are rays of hope in this darkscene. NAMI-MN is backing a billauthored by Representative MindyGreiling and Senator Don Betzold, whichwould permit earlier intervention, so thatpeople with brain disorders could avoiddecompensation without becoming"imminently dangerous." Another bill,authored by Senator Linda Berglin andRepresentative Fran Bradley, is aimed atfunding community-based programs at ahigher level, and making services moreavailable throughout the state. If both ofthese pass during the 2001 legislativesession, and if the managed carecompanies are required to pay mentalhealth benefits on the same basis as thoserelated to physiological health, Minnesotawill take a significant step forward, andtoward the vision which inspired those ofus intending to reform the system a quartercentury ago. Taking this step will requirecourage by legislators, and a betterappreciation for the long-term return onthis investment in our people.

It is not too much to hope for, butgiven political realities, it is perhaps toomuch to count on. Even in good old,progressive Minnesota.

John W. Miltonformer Minnesota State Senator

Co-chair, NAMI-MN Legislative Committee

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