A PSYCHIATRIC CRISIS RESOURCE KIT: respond to – psychiatric crisis. We are making the Kit available in three ways: Help and Hope for Family • In person to those attending our “CALM Approach to Advocacy” workshop at the 2011 NAMI Caregivers and Advocates Convention in Chicago • Online in our Get Help section Y at TreatmentAdvocacyCenter.org our loved one is in a psychiat- frightening, exhausting and frustrat- ric crisis. Maybe he has stopped ing it is for family members, friends • On our new menued CD-ROM eating, bathing or dressing. and others to intervene effectively available at no cost (while Maybe he is responding to internal when a loved one is in psychiatric supplies last) “voices” that are telling him to engage crisis. What rights do you have as a in deplorable acts. Perhaps you’ve parent, spouse or friend? What rights The centerpiece of the Psychi- begun to worry that he will hurt him- does your loved one have? How do atric Crisis Resource Kit is a user- self or someone else – or you. You’re you get treatment if she resists help friendly template that makes it easy afraid of what will happen if you leave or, for that matter, doesn’t even seem for advocates and mental health the house … or if you stay. If you do to know she’s ill? How does someone professionals to develop a localized something … or if you do nothing. get “committed” to a state hospital? emergency resource guide. With the You don’t know where to turn for help Does your state have a law that could because nobody around you has been require your loved one to get treat- through anything like this. ment right away, before she gets even The centerpiece of the The Treatment Advocacy sicker or maybe even dangerous? Center’s mission is to eliminate legal Most importantly, who can you call Psychiatric Crisis Resource and other barriers to treatment laws for help right now? Kit is a user-friendly and public policies that encourage To better equip families and early intervention and sustained advocates in circumstances like template that makes treatment. In pursuing this mission, these, the Treatment Advocacy Center it easy for advocates we see and hear almost daily how published a special “Family Advocate” issue of Catalyst in 2005. In the years and mental health since, the demands on families and professionals to develop friends of those with mental illness have only grown. State mental health a localized emergency budgets have plunged, fewer people resource guide. with severe mental illness are receiv- ing adequate treatment services, and 2.......Executive Director’s Corner more family members and friends are professionally designed template and 4................. Preparing for a Crisis being called upon to fill the gaps. access to a computer and printer, With these needs in mind, the anyone can quickly and economically 7...................................Profiles in Treatment Advocacy Center presents publish the most crucial informa- Treatment Advocacy this updated “Family Advocate” issue tion that family members and other 8...................... Around the States of Catalyst. With it, we also introduce caregivers in any community need in our Psychiatric Crisis Resource Kit, order to intervene when faced with a 10 ................. Voices in Treatment a collection of tools and information psychiatric crisis. The brochure layout 12 ...... HIPAA Privacy Restrictions for responding to – and helping others CONTINUED ON PAGE 3 14 ............................ SMRI Update 15...............Memorials & Tributes 1 www.TreatmentAdvocacyCenter.org We are emphatic about helping families get their SEVERE MENTAL ILLNESS: loved ones into treatment because we know treatment works. In this issue’s “Profile in Treatment Advocacy,” It’s a Policy Director Brian Stettin tells how his involvement as a young attorney in the conception and drafting of New Family Affair York’s assisted outpatient treatment (AOT) law – “Kendra’s Law” – changed his life and his career. Brian doesn’t men- tion the impact of his achievement, but I will: Kendra’s Law’s dramatic success in reducing arrest, incarceration, W elcome to our updated and expanded fam- homelessness, violence, victimization and other con- ily issue of Catalyst. The Treatment Advocacy sequences of untreated severe mental illness has been Center has from its inception maintained a widely studied and well-documented. close connection to families of people with severe mental One of Brian’s projects since joining us has been illness. The sister of our founder, Dr. E. Fuller Torrey, suf- persuading counties in Texas to make full use of that fered from schizophrenia. Innumerable family members state’s existing AOT law. Exhibit A has been the remark- who have lost loves ones to mental illness have become able results achieved through AOT in San Antonio. One of active supporters. Parents and other family members this issue’s “Voices in Treatment” vividly embodies that struggling daily to take care of loved ones have been criti- achievement (please see p. 10). cal to our effectiveness in fighting for better laws and bet- The case of San Antonio brings me to a crucial point. ter implementation of those laws already on the books. Our middle name is “advocacy,” and our advocacy takes With this 2011 edition of our “Family Advocate” issue, many forms. We promote the passage and implementation we introduce still another resource for overwhelmed fami- of more progressive civil commitment laws. We educate lies and advocates – the Psychiatric Crisis Resource Kit, the media and the public about barriers to treatment, featured in our cover story. A project of the Torrey Action the consequences of non-treatment, and the social and Fund, this collection of tools includes a new template that economic value of timely intervention through assisted makes it easy for groups and individuals to create local outpatient treatment. We provide tools to equip family resource guides for families dealing with psychiatric crisis. members to advocate for loved ones in crisis, as we have Because we know that civil commitment may with our Psych Crisis Kit and this issue of Catalyst. As we be necessary as a last resort in an acute crisis, the kit carry on all these vital endeavors, we welcome and thank includes our fully updated and expanded “State Standards you for being part of our family. for Assisted Treatment,” a guide to civil commitment Keep in touch, criteria for each state and the District of Columbia. Our “State Standards” has long been a unique resource. Now we have expanded it to include standards for psychiatric evaluation (sometimes called “emergency hold”) and Jim Pavle, Executive Director state-specific details on who can petition the court for civil commitment. TELL US ABOUT YOUR HERO for the 2011 Torrey Advocacy Nominations are now being accepted the courage and tenacity of those who Commendation Award, which rewards to treatment for severe mental illness. selflessly advocate to eliminate barriers mail, than September 1, 2011, and sent by Entries must be postmarked no later ATTN: TAC Award Nominee. y Center, email or fax to the Treatment Advocac right. Contact information is located in the box to the retion of The Torrey Advocacy Com mendation is awarded at the sole disc Catalyst is a publication of the Treatment Advocacy of directors. the Treatment Advocacy Center board Center to update friends and supporters about our programs, activities and other news and developments Previous Winners affecting the treatment of severe mental illness. ael Biasotti 2010 : Randall Hagar, Barbara and Mich ’ Assn. Treatment Advocacy Center is a private, nonprofit, a Wilcox, Joe Bruce, National Sheriffs 2009: The Webdale Family, Nick and Laur 501(c)(3) organization and does not accept funding Karen Gherardini from companies or entities involved in the sale, 2007: Jeanette Costello, Janice DeLoof, marketing or distribution of pharmaceutical products. b, Dr. Darold Tref fert 2006: Dr. Jeffrey Geller, Dr. Richard Lam ory, Alice Petree Website: TreatmentAdvocacyCenter.org 2005: Sheriff Donald Eslinger, Linda Greg Email: Info@TreatmentAdvocacyCenter.org 2004: Charles “Chuck” Sosebee Telephone: 703-294-6001 Facsimile: 703-294-6010 2 2002: Dr. Mor ton Birnbaum Crisis Kit Coming to Chicago CONTINUED FROM PAGE1 for NAMI 2011? incorporates helpful language and Don’t miss our CALM Approach to Advocacy headings along with space to insert local information about … your state’s Family members: How do you get the concrete, state-specific help you standards for inpatient civil commit- need to get through a mental health crisis with a loved one? ment … the availability (or not) of civil Advocates: How can you get involved in the legislative process and commitment to outpatient treatment make your state laws work for you and others who need them? (“assisted outpatient treatment”/AOT) … information about the local process Communicators: What is the best way to use old and new media to get for obtaining a psychiatric emergency your message heard quickly, easily and economically? evaluation… contact names and num- This year’s Treatment Advocacy Center workshop is entitled “The CALM bers for local mental health agencies, approach to Advocacy: Get through the Crisis, Advocate for Legislative courts and others often involved in Change, Make Media work for you.” In it, our panel will — addressing a psychiatric crisis … • Share our new Psychiatric Crisis Resource Kit. and more. • Present techniques for using both traditional In addition to the template, the and new media to influence, educate and Kit provides these practical tools: transform the mental health conversation. • “State Standards for Assisted • Show how to go from “our law that needs Treatment: Civil Commitment to be changed” to “our law gets it right.” Criteria for Inpatient or Outpatient Psychiatric Get through a mental health crisis armed with information. Make a Treatment” (2011) – a central difference and educate others. Influence legislators and get life-saving and comprehensive guide to laws passed. The panel will feature Policy Director Brian Stettin, state standards governing civil Legislative and Policy Counsels Kristina Ragosta and Aileen Kroll, commitment in all 50 states and Communications Director Doris Fuller. and the District of Columbia; The presentation will take place Friday, July 8 from 3:30-4:45 p.m. newly expanded to include information about who can petition for court-ordered intervention and criteria for an emergency psychiatric • “Eliminating Barriers: Tips for • A brief orientation video – evaluation Advocates on Busting Through” a greeting from Dr. E. Fuller – a two-page tip sheet on Torrey, founder of the • Step-by-step guidelines for overcoming specific obstacles Treatment Advocacy Center, caregivers to use in collecting to getting treatment from a and an overview of the and storing the information slow-moving or unresponsive Psychiatric Crisis Resource that emergency responders, health-care bureaucracy; Kit by Aileen Kroll, legislative hospital personnel and other includes an overview of HIPAA and policy counsel medical providers need in order The Psychiatric Crisis Resource to act quickly and appropriately • Crisis Glossary – definitions of key terms that often arise Kit is a Torrey Action Fund project de- in a psychiatric crisis veloped to benefit families, caregivers during or following a crisis, • Printable/downloadable single- e.g.,“conditional release,” and those who support them. page handouts containing “psychiatric advance directive” suggestions for handling specific emergency situations, e.g., when a loved one is in danger, assaultive or suicidal Come to our CALM workshop at the NAMI 2011 conference and receive your copy of our new Psychiatric Crisis Resource Kit CD-ROM at no cost! And, please, drop by and introduce yourself at our booth in the conference exhibit hall. 3 Preparing for Crisis The events that trigger the need for using mental health treatment laws are often harrowing and always stressful. When efforts to avert the crisis are unsuccessful, the emergency conditions typically require instant decisions and fast action. Following are tools and information from the Psychiatric Crisis Resource Kit that are designed to help families and other caregivers prepare for emergency conditions beforehand - when there is still the time and presence of mind to do research, gather materials and otherwise prepare for an acute episode. We suggest keeping the resources you gather in an electronic form that is accessible from a por- table communication device or in a three-ring binder, file box or other easily transported con- tainer. It is also advisable to use letter-sized, one-sided paper that can easily be faxed or emailed to law enforcement, medical providers and mental health agencies. Know your state standards for assisted treatment The types of public psychiatric services available, the procedures for accessing them and pertinent legal provisions vary widely from state to state. To effectively advocate for intervention in a crisis, it is essential to know the standards that govern intervention locally. “State Standards for Assisted Treatment” contains statutory language that governs civil commit- ment in each of the 50 states and the District of Columbia. Included are standards for court-ordered treatment and emergency evaluation. Find “State Standards” by clicking the link on any state page of our website. Learn about the forms of crisis intervention Three forms of psychiatric intervention may be available to address mental health crises in your state. Bear in mind that each of these are known by different names in different states. • Emergency psychiatric hold or evaluation – typically a relatively short intervention of fixed duration (e.g., 72 hours) during which the patient is evaluated to determine whether further intervention is necessary • Civil commitment — Inpatient – a process whereby a judge orders a person with symptoms of mental illness who meets the state’s legal criteria to be held beyond the emergency evaluation period in a hospital — Outpatient – a process whereby a judge orders a person with symptoms of mental illness who meets the state’s legal criteria to adhere to a mental health treatment plan while living in the community Emergency contacts list Having an up-to-date and complete list of key people, agencies and organizations to contact makes it faster and easier to get appropriate help if and when an emergency develops. • Your standby support person(s) – • Telephone hotline numbers for the stable and reliable third party different crises: mental illness, or parties willing to back you up suicide, domestic violence in an emergency • Local hospital/emergency room • Mobile crisis team • Non-911 police/paramedic • Psychiatric case manager numbers that are answered 24/7 • Program of Assertive Community (e.g., local precinct) Treatment (PACT or ACT) team • Crisis Intervention Team (CIT), • Local mental health center or county if local law enforcement has one mental health department • Local advocates who can advise or support you 4 • Sympathetic public official/elected • Employers or others who will official with whom you’ve established need to be notified immediately if a relationship your loved one is hospitalized • Homeless shelter(s) • Legal Aid Services, public • Friends of your loved one defender or private attorney familiar with mental health law Provide copies of this list to your standby support person and anyone who might be called upon to act in your absence. Make multiple copies of the list, store it in your portable electronic device, and never leave home without it. Keep a copy at home, at work, in your car, in the briefcase you carry on trips – anywhere you might be when a crisis arises. Revisit and revise your list regularly to make sure numbers and names are up to date. Compile a psychiatric and medical history A brief, easy-to-read summary of vital statistics, psychiatric history and medication records may help medical providers make informed choices during a crisis. Limit this page to key facts. • Full name and date of birth • Dates and locations of previous hospitalizations • Full address • Any medication(s) that has/have • Psychiatric diagnosis helped in the past (e.g., schizophrenia, schizoaffective disorder, bipolar disorder) • Any medication(s) that has/have not helped in the past • Age at diagnosis • History of symptomatic behaviors • Any other pertinent medical conditions (e.g., running up huge debt, getting (e.g., diabetes, allergies) into car accidents, threatening • Current symptoms family members, failing to care for basic needs) • Current condition (e.g., suicidal, homeless, missing, vulnerable, violent, • Date(s) and charge(s) of previous abusing substances, other) arrest(s)/incarceration(s) • Treating psychiatrist’s name • Current photograph and number • Key physical characteristics: height, • Local service provider’s name race, age, weight, hair color and provider (e.g., mental health • Full name, contact numbers and clinic, therapist) address for person to be contacted • Current medication(s) in an emergency Leave space to add a description of clothing last worn in case that information is needed. Collect forms and informational materials. Examples might include: • Your state’s standards for emergency • Handouts, brochures, other psychiatric evaluation and for materials supplied to you by civil commitment hospitals, law enforcement, mental health agencies, others • Petition forms for civil commitment – multiple blank copies. Complete any • Authorization for release of fixed information ahead of time. information, already signed by your loved one, if applicable • Advance directive, if applicable. 5 IN A CRISIS General Guidelines Your goal in a mental health emergency is to stabilize the situation and get the person professional help as quickly as possible. • Do not try to manage the situation alone – Sometimes just having another party present or on the phone with your loved one will defuse a situation. • Start at the top of your Emergency Contacts list and work your way down – If it is an evening or weekend and you cannot reach providers or agen- cies, call the most appropriate hot-line. • Speak to your loved one in a calm, quiet voice – If it seems he/she isn’t listening or can’t hear you, it is possible that auditory hallucinations (“voices”) may be interfering. Don’t shout; raising your voice won’t help and may escalate tensions. • Keep instructions and explanations simple and clear – Say, “We’re going to the car now,” not, “After we get in the car, we’ll drive to your doctor’s office so she can examine you.” • Respond to delusions by talking about the person’s feelings, not about the delusions – Say, “This must be frightening,” not “You shouldn’t be frightened – nobody’s going to hurt you.” • Don’t stare – Direct eye contact may be perceived as confrontational or threatening. • Don’t touch unless absolutely necessary – Touch may be perceived as a threat and trigger a violent reaction. • Don’t stand over the person – If the person is seated, seat yourself to avoid being perceived as trying to control or intimidate. • Don’t give multiple choices or ask multi-part questions – Choices will in- crease confusion. Say, “Would you like me to call your psychiatrist?” not “Would you rather I called your psychiatrist or your therapist?” • Don’t threaten or criticize – Acute mental illness is a medical emergency. Suggesting that the person has chosen to be in this condition won’t help and may escalate tension. • Don’t argue with others on the scene – Conduct all discussion of the situation with third parties quietly and out of the person’s hearing. • Don’t whisper, joke or laugh – This may increase agitation and/or trigger paranoia. Print a copy of this list to keep with your list of essential telephone numbers. 6 Brian Stettin is the Treatment Advocacy Center’s policy director. In this role, he helps to lead state-level legislative reform and implementation campaigns and nurtures alliances between the organization and groups that share our goals. WHAT BROUGHT YOU INTO THE WORLD OF MENTAL HEALTH ADVOCACY? Unlike so many of the people who have worked at the Treatment Advocacy Center over the years, I was not pulled into this through the struggles of a loved one with mental illness. For me, it began on January 4, 1999, my first day of work as a policy aide to the New York State Attorney Brian with his children Eva and Jeremy General, and the day after Kendra Webdale was pushed to her death from a New York City subway platform by a WHAT IS IT ABOUT THE QUEST FOR ENLIGHTENED MENTAL man with a long history of cycling in and out of treatment HEALTH CARE THAT SO RESONATES WITH YOU? for schizophrenia. There are hot-button issues in our society that will On the commute to my new job that morning, I read inevitably divide us, given our varying ideologies, upbring- the horrible early details of Kendra’s death in the New York ings, and orientations. We all know what they are, and tabloids, like everyone else. A few hours later – before I we’ve all been in situations where we quickly realize the even had an office – I was asked to prepare a memo to the pointlessness in debating them. Attorney General on what if any change in New York law But the question of whether to allow people with might have prevented such a senseless tragedy. I furiously severe mental illness and lack of insight to refuse medi- set about learning as much as I could about the New York cal treatment has never struck me as one of those issues. mental health system. Before the day was out I had been When I first got involved with Kendra’s Law, I was amazed introduced to the concept of “outpatient commitment,” to find any controversy around this at all. I still am! We and to a recently-minted organization called the Treat- are, after all, talking about diseases that totally overwhelm ment Advocacy Center. a person’s ability to make rational choices, and about a set Over the months that followed – with much help of consequences that couldn’t be more dire. And I guess from my new friends at the Treatment Advocacy Center – it’s the way I’m wired, but nothing animates me more than I crafted the Attorney General’s original proposal for the ringing of my “YOU’VE-GOTTA-BE-KIDDING!” bell. “assisted outpatient treatment,” met with the Webdale I’m not talking about the small, vocal group who family to explain the proposal to them and secure their believe psychiatry is a sinister fraud. With them, our blessing to call it “Kendra’s Law,” worked out some amend- differences really do seem of the hopeless variety. But ments with the governor and legislature, marshaled I’m interested in the people who should know better – support among families impacted by mental illness and those who actually make mental health policy and run other stakeholders, and tried to beat back the tide of mental health systems, and never think to question the misinformation and frightful predictions that opponents prevailing dogma that the recovery process must be had unleashed. “self-directed” at all costs. That summer, Kendra’s Law was signed. At the In my experience, the great majority are caring time, I thought, “OK, that went well, bring on the next people who share our ultimate goals. When we engage dragon to slay!” But the mental health issue had gotten them with common sense and our mountain of data, further under my skin than I initially realized. I spent 10 we get through to some, and good things happen. more years in New York State government working on a host of important matters, but nothing that ever meant AND HOW HAVE YOU ADJUSTED TO LIFE IN WASHINGTON? as much to me. When the opportunity arose to come to Love it! Great place to raise kids. But I must say, I’m Washington and help promote the Treatment Advocacy glad I didn’t attempt the move before it became possible Center’s agenda nationwide, I jumped, and I’ve never to watch Yankee games over the Internet. been happier in my work. 7 In the landmark Olmstead case of 1999, the U.S. Supreme Court ruled that the Americans with Disabilities Act (ADA) prohibits states from indefinitely hospitalizing people with mental disabilities who have been deemed capable of surviving safely in the community and requires reasonable efforts to accommodate the needs of such patients for outpatient care. The Treatment Advocacy Center has been at the forefront of the movement to connect people with severe mental illness to needed treatment, whether in a hospital or in the community. For some people, ensuring such connection requires government to do more than merely establish the services; those who lack insight into their illness also may need the benefit of assisted outpatient treatment (AOT) if they are to safely survive in the community and avoid the revolving doors of hospitals and jails. We are equally mindful that a person can’t be court- ordered into community-based treatment that doesn’t exist. Outpatients who need AOT and those who don’t all have a stake in the dedication of state mental health systems to meeting their duties under Olmstead. Justice Anthony Kennedy in his concurring opinion in Olmstead quoted at length from founder E. Fuller Torrey’s book, Out of the Shadows. “For a substantial minority … deinstitutionalization has been a psychiatric Titanic. Their lives are virtually devoid of ‘dignity’ or ‘integrity of body, mind, and spirit.’ ‘Self-determination’ often means merely that the person has a choice of soup kitchens. The ‘least restrictive setting’ frequently turns out to be a cardboard box, a jail cell, or a terror-filled existence plagued by both real and imaginary enemies.” Eleven years after Olmstead, this remains the case for far too many. We begin this edition of “Around the States” with dispatches from three of the states that are subjects of recent or ongoing Department of Justice actions for failure to comply with the ADA as interpreted in Olmstead. It is our sincere hope that these investigations culminate in meaningful change. North Carolina must turn to unregulated and often squalid adult care homes, where supported housing and supported employment programs to serve 9,000 In 2001, North warehousing is the norm. individuals with mental illness in Carolina legislators ap- The state Department of Health community settings. The agreement proved a plan to bring and Human Services was required will also increase community cri- the state’s mental health system into to answer 31 detailed questions and sis services to respond to and serve compliance with Olmstead by down- submit extensive documents to the individuals in a mental health crisis sizing state hospitals and creating a federal investigators. As we go to without admission to a state hospital, “Mental Health Trust Fund” to seed press, those submissions are still un- including crisis services centers, crisis new community treatment programs. der Department of Justice review. stabilization programs, mobile crisis Unfortunately, the two linked goals and crisis apartments.” were not pursued with equal zeal; the next year, the Trust Fund was raided Georgia The Treatment Advocacy Center is cautiously optimistic about this to plug a hole in the state budget and A 2009 Department outcome. The community services was never replenished. Nonetheless, of Justice investigation that Georgia has agreed to build are the hospital downsizing went for- found Georgia – the state wonderful when properly implement- ward. The predictable result was a se- from which the Olmstead case arose – ed but, in too many places, exist in vere statewide bed shortage that has continuing to warehouse people with name only. We urge the Department only grown worse with subsequent mental illness in violation of the ADA. of Justice to vigilantly monitor the rounds of budget cutting. The new allegations led to a federal state’s compliance. And, of course, In late 2010, the Department of lawsuit, which ended in a comprehen- we hope Georgia will seize this Justice announced a formal investiga- sive settlement agreement signed in opportunity to effectively implement tion into North Carolina’s struggling October 2010. its assisted outpatient treatment law mental health system and is currently A DOJ press release detailed the so that those who lack insight into reviewing the consequences of the settlement terms: “[O]ver the next five their illness may claim their rightful state’s “reform.” With so few state years, Georgia will increase its asser- share of the promised bounty. hospital beds available, individuals tive community treatment, intensive with severe mental illness in crisis case management, case management, 8 Delaware Arizona At least one panelist, University of Arizona psychiatry professor Dr. The Department of A community forum Joel Dvoskin, questioned whether ex- Justice has now complet- entitled “A delicate bal- panded use of involuntary treatment ed an investigation initi- ance: Creating a better, mechanisms should be part of the ated in 2007 into conditions and prac- post-Jan. 8 system to protect the reform equation. Dvoskin opined that tices at Delaware Psychiatric Center public and help the seriously mentally “[r]ight now, we should be focusing on (DPC), the state’s sole public psychiat- ill” was held on the University of Ari- having enough mental-health services ric hospital. In a November 2010 letter zona campus in Tucson in April. The so that people who want services can to Governor Jack Markell, the depart- Schorr Family Foundation, the Arizona get them.” ment detailed its findings that “the Daily Star and the Community Partner- With all due respect to Dr. State’s current mental health system ship of Southern Arizona (the regional Dvoskin, that strikes us as a false – fails to provide services to individu- provider of public mental health ser- and discriminatory – choice. The als with mental illness in the most vices) presented the event in the hope urgent need for adequate voluntary integrated setting appropriate to their that a renewed focus on improving services is manifest. But to prioritize needs … [which] has resulted in need- mental health care will help Tucso- on the basis of whether a patient has less prolonged institutionalization of nians heal from the mass shooting by sufficient insight to seek care, rather many individuals with disabilities in Jared Lee Loughner that left six dead than on the severity of illness, is DPC who could be served in the com- and 13 injured in January. arbitrary and inhumane. Indeed, we munity. It also has placed individuals Among the panelists assembled wonder how such a system would currently in the community at risk of for the forum was Dr. Thomas Insel, have helped Loughner, who appears unnecessary institutionalization.” director of the National Institute of not to have sought treatment even af- The letter reports that, at the Mental Health. The Daily Star reported ter his college conditioned his return time of one investigative visit, 85 that when “[s]ome speakers ques- to campus upon it. patients – more than half of the tioned the connection … between hospital’s total census – had been violence and mental illness …, Insel designated “clinically ready to leave said it should not be taboo to discuss [T]o prioritize on the the hospital.” It was found that such links.” basis of whether a patient “[t]he most significant barriers to “We need to recognize that un- their discharge reflect not their in- treated people with mental illness are has sufficient insight to dividual needs, but rather, the level at greater risk for violence, particular- seek care, rather than on of [state] resources and categorical ly those with paranoia and command restrictions on these funds.” As a re- hallucinations,” said Insel. “Denial the severity of illness, is sult, the average length of stay in the will never reduce stigma. What we arbitrary and inhumane. hospital’s non-forensic units – which need is to understand all of the facts.” the state itself has said should fall between three and six months – is ap- proximately three years. The Department of Justice fur- Iowa parents had lived with him on the family farm until March, when both ther documents serious injuries and On the morning of parents moved to a nursing home. deaths at DPC attributable to the hos- April 4, Keokuk County Shortly thereafter, Krier was taken to pital’s failure to identify and provide Deputy Sheriff Eric Stein, a local ER following an altercation and appropriate interventions and super- 38, was shot to death by Jeffrey Krier, held for six days at a psychiatric facil- vision and asserts that “utter failure 53, as Stein approached Krier’s home ity in Des Moines. But, according to to provide care amounts to deliberate to question him about recent vandal- the family, their petition to have him indifference and is an egregious viola- ism of a neighbor’s property. Three committed for longer was denied by tion of … constitutional rights.” hours later, with his house surround- the court, and Krier was released to The letter concludes with a not- ed by state police, Krier emerged his isolated property. The Des Moines so-subtle warning that if cooperative brandishing weapons and was him- Register has reported multiple allega- efforts to rectify the problems should self shot to death. tions of Krier threatening and menac- fail, a lawsuit is likely. Later that day, Krier’s heart- ing neighbors in the weeks between While Delaware has not issued a broken brother and sister released a his release and the shootings. public response, a spokesman for the statement to local media expressing The chronology leading up to state Division of Substance Abuse and their condolences to the Stein family the dreadful events of April 4 raises Mental Health reports that the agency and detailing their brother’s 30-year serious questions about the quality is “working diligently and coopera- struggle with bipolar disorder. Jeffrey of mental health care in southeastern tively” with the Department of Justice Krier had not worked in 15 years. His CONTINUED ON PAGE 14 to address the concerns. 9 VOICES IN TREATMENT Three Lives, Three Stories, Three Endings E ric Smith was so gifted as a For Eric, the turn came as a tinguished himself early and child pianist that local newspa- teenager in Texas. After a childhood often, his mother Cathy says. He pers reported his accomplish- reveling and excelling in music, he was accepted to Stanford, Princeton ments, the University of Texas at San lost interest in school, started us- and Cornell and became a Stanford Antonio asked him to play in a uni- ing drugs and grew combative in his freshman at the age of 17. At first, versity production of Die Fledermaus, close-knit family. Scared and worried, he excelled, but – in his junior year and he won a music competition as a his parents took Eric to a psychiatrist, – began acting in ways that alarmed seventh-grader. who diagnosed the boy often called a even his peers. One of them went Chris Weaver was so precocious musical prodigy with bipolar disorder. to Cathy to say he was so worried that academically that after a few months Eric didn’t accept the diagnosis. he’d asked his boss – a former thera- in first grade, school officials told “When I was told I was bipolar and pist – about Chris’s symptoms and his parents that he should move to needed to be on medications, I said ‘I was told Chris should see a mental don’t need to be on health professional. any medication.’ And For a time, Chris returned to they – the doctors the university, went to a psychiatrist and the counseling and stayed on medications, says his team – said, ‘Well, mother, but eventually he stopped you do.’ And they accepting treatment, and his life, were trying to spout like Eric’s, swiftly deteriorated. He statistics to me, and I dropped out of school to write a book said, ‘I’m fine without he believed would save the world medication. Medica- and took Cathy’s camper on a cross- tion is for people who country trip but kept getting lost. He are hallucinating, or developed delusions that the FBI and this or that.’ I was CIA were after him and made a plan coming up with all to disappear in Latin America. Even- these things I’d seen tually he was hospitalized and diag- The Smiths before Eric unraveled (L-R): Father Brad, Eric at age 11, on TV. Little did I nosed with paranoid schizophrenia. David at age 14 and mother Nancy. know that they would Six times in all, he was hospitalized be me later on in life.” and released, each time rebounding second grade immediately. As a high He eventually stopped using for a while before going off his meds school senior, he won a national writ- drugs, but the symptoms of bipolar and relapsing. ing competition and was accept- disorder continued, and his life con- Curt Bauer sailed through the ed by two Ivy League universities tinued to unravel. He dropped out of ages where Eric and Chris began to and Stanford. school and lost his job, moved into his Curt Bauer was so motivated car and lived in squalor. His parents that, after earning a bachelor’s degree – Nancy and Bradley Smith – were in philosophy, he earned a master’s baffled, heartbroken and often panic- degree in psychology and became stricken. After he threatened them, a certified respiratory therapist – they called the police. Eric was arrest- all while being a husband and ed, jailed and ultimately committed involved father. to a Texas state psychiatric hospital. And then came the onset of When it came time for his release, the severe mental illness. Smiths were terrified anew – certain Each life took a drastic turn, and their son wouldn’t stay on meds and each turn led to a different destination fearful of a relapse and all the new – one assisted by court-ordered outpa- consequences that would bring. tient treatment (AOT), one assisted by Chris Weaver’s story starts court-ordered inpatient treatment, one much like Eric’s. Chris’s talents were in rejection of treatment. in science and math, and he, too, dis- Chris Weaver 10 imminent danger. With improved ac- cess to AOT, Curt sees “a future where a lot of suffering can be averted, where a lot of families don’t have to be destroyed, a lot of children don’t have to see their parents go through the terrible side effects or the terrible damage a mental illness can cause.” For Cathy Weaver, the time for hope is past. Shortly after Christmas in 1999, Chris drove away from her home and took his own life. He was 28. After he died, family members found a plastic bag the size of a soccer ball filled with the prescriptions he had not taken. Curt Bauer Cathy today lives in Austin, is have symptoms of mental illness. He ignored his admonition and saved active in the local NAMI affiliate there completed not one but two degrees, his life. With this, because he had and advocates for local implementa- including a master’s, and married. become a danger to himself, Curt tion of Texas’s AOT law. Her advo- He loved spending time with his boys. met the criteria for court-ordered cacy is driven by her belief that Chris “I would go do things with them,” he hospitalization, which enabled Debbie would have survived his illness had recalls now. “We’d go shopping. I’d at last to get her husband the treat- the option of court-ordered outpatient go run the dogs with them. I’d make ment he needed, first in a rehabilita- treatment existed for him. “If there sure I didn’t miss any of their events.” tion center and – when his insurance had been an outpatient commitment A certified respiratory therapist, he ran out – in the state hospital in applied to him that kept him on his worked in ICUs and trauma units and Harrisburg, Pennsylvania. He remain- meds, he would be here working for provided neonatal care in hospitals. ed there for two years, until the state an engineering firm,” she says. “Does His work was “very interesting, very shut the facility down. this make me angry? It makes me stimulating and very rewarding,” Curt today is 56 and lives in a want to chew nails.” though meeting the financial needs group home in Harrisburg. His mar- Eric Smith is 28, the same age of a young family meant he often riage did not survive the strain of his Chris was when he died. He lives worked two jobs at once. illness. “When it’s all said and done, about 70 miles from Cathy Weaver, Eventually the pressures took I lost 24 years of a marriage, I’ve lost in San Antonio. After his release from a toll. “Things my wife Debbie and I the connection I had with my two the hospital, Eric was court-ordered used to do as a family, we no longer sons, I lost my job and pretty much into his county’s assisted outpatient did,” he says now. Debbie suggested everything that would ever say who treatment program. His mother Nancy he was depressed, but he rejected I was,” he says. Nonetheless, court- says, “This is the first time since Eric the idea. “I know the clinical signs of ordered hospitalization saved his was diagnosed that he has ever been depression and this just didn’t fit” is life, and he is steadily rebuilding. He compliant for any period of time. And how he saw the situation. To appease works for NAMI-Pennsylvania and it started with the program.” Eric, now his wife, Curt finally went to a psy- eloquently advocates for reform of his in college earning nearly straight A’s chologist but didn’t accept her diag- state’s overly restrictive assisted out- and planning a career, says simply, nosis. “I did the questionnaire and all patient treatment law with its narrow “It saved my life.” this, and we talked a little bit, but the requirement that a person present an impression I got from her, from the way she talked about depression, was that she was more depressed than I The dramatic, full story of these “voices in treatment” and the was. So when I came home, I said ‘I families that fought for them is now available online and in our new don’t think this is the problem.’” 30-minute documentary, “Stopping the Revolving Door - A Civil Curt was wrong. He stopped Approach to Treating Severe Mental Illness.” Poignant, inspiring and eating and taking showers. He stayed in bed 16 hours a day, crawling out instructive in equal measure, the video is appropriate for community just long enough to go to work and meetings, law enforcement training, legislative information and other come back. One night, he brought educational, or awareness and advocacy activities. To view the video home a bag of medications from the online, visit the Video Library on our website. To request a free DVD hospital, called his wife at work and (subject to availability), email Info@TreatmentAdvocacyCenter.org told her not to come home. She or telephone 703-294-6001. 11 Understanding and Navigating HIPAA Privacy Restrictions The Health Insurance Portability and Accountability Act of 1996 (HIPAA) created a national standard for the protection of certain types of health care information. The U.S. Department of Health and Human Services issued a “Privacy Rule” in 2002 to implement the requirements of HIPAA. The Privacy Rule limits the circumstances in which individually identifiable health information can be used and disclosed by covered entities (health care insurers, providers and clearinghouses). When a loved one has severe mental illness, family members and other caregivers need to understand what kind of information they can obtain regarding the diagnosis, treatment plan, medications, etc. HIPAA establishes minimum protections for the release of such protected health information (PHI). Generally speaking, when a state law and HIPAA conflict, HIPAA preempts the state law. However, state laws that prohibit or further restrict the disclosure of protected health information will prevail even if HIPAA would permit the disclosure. Many states have their own laws governing confidentiality – several of which are more stringent than federal law. When faced with a HIPAA hurdle, it’s important to find out what your state’s law says. IMPORTANT: Providers are not precluded under HIPAA from accepting information from families or others who are knowledgeable about the individual and his or her treatment needs. A good medical provider will want to know all the relevant information available. If your loved one’s provider refuses to listen to your information, contact a supervisor such as the hospital administrator, insist that you be heard, and/or submit written information. An annotated version of this chart with source references is available on the Treatment Advocacy Center website. Type of disclosure Rights How disclosure can help Restrictions To patient An individual has the right to review If family members can convince their There are a few exceptions to this rule. and obtain a copy of his/her protected relative to request a copy of his/her An individual does not automatically health information (PHI). Covered medical records and share the records have the right to review or obtain entities such as hospitals and with them, they will be informed of their psychotherapy notes, information physicians must provide PHI to the relative’s condition and treatment. compiled for legal proceedings or individual who is the subject of the medical records from correctional medical record. centers. A health care professional can deny an individual access to his/ her own records if the professional believes access could cause harm to the individual or another.Also, some state laws limit the rights of individuals with mental illness to act on their own behalves and to have free access to their protected health histories. To personal A personal representative is The personal representative may access If the treating physician suspects representative someone legally authorized to make the individual’s medical records, speak the personal representative of abusing health care decisions on behalf of with the individual’s doctors and make or neglecting a person with mental another individual.viii If you have a treatment decisions on behalf of the illness, the health care provider is not power of attorney or guardianship/ individual. State law controls who can required to share information with the conservatorship, you are considered a act as a personal representative to personal representative. Disclosure personal representative. Health care make health care decisions on behalf is also limited when a personal providers are required to treat personal of the individual. Guardianship or representative only has authority to representatives as they would the conservatorship require a court order. act on behalf of the person in limited patient, i.e., personal representatives Power of attorney requires the loved or specific health care decisions. are entitled to full access to the one’s authorization. Also, a health care provider may refuse individual’s medical records. to share information with a personal representative if the person with mental illness objects to the disclosure, and the disclosure is permitted but not required under the Privacy Rule. Conversely, entities must make disclosures to personal representatives that are required under the Privacy Rule, even if the individual objects. 12 Type of disclosure Rights How disclosure can help Restrictions To families A covered entity – generally a health Families of persons with mental illness In a psychiatric crisis, this is not often and others care provider - must obtain written can access specific information about a practical choice because it requires with “formal permission (“formal authorization”) a relative if the relative is willing to give that a loved one – who may not even authorization” from the person with mental illness authorization. believe he/she is ill – be willing to give for any use or disclosure of protected authorization. Even so, it is always health information that is not for worth trying to obtain. If a provider treatment, payment or health care withholds information from you operations, or otherwise authorized because there’s no release, insist by the Privacy Rule. This written that he/she at least ask your loved permission constitutes the authorization one if he/she would be willing to sign for disclosure. The individual making an authorization. the authorization must be told that he/she can revoke it at any time. To families and A covered entity can provide family As long as the individual is present and This disclosure must be made according others where an members with information if the entity does not object, a provider may disclose to the professional judgment of the individual has an obtains informal permission from the information to the family. covered entity – in most cases, the “opportunity to person with the severe mental illness treating physician. An individual’s doctor agree or object” by either asking the person outright may feel it is inappropriate to disclose or by circumstances that clearly give information to the family in front of the person the opportunity to agree or the patient. Disclosures of this type object to the disclosure. are permitted, but not required. Under the concept of “minimum necessary,” providers must limit unnecessary or inappropriate access to an individual’s protected health information. But this is not an absolute standard; providers can make their own assessment of what part of the protected health information is reasonably necessary for a particular purpose. To families and When an individual is incapacitated, in The Privacy Rule allows the disclosure Because health care providers are others in “best an emergency situation or not present, of some protected health information not required by HIPAA to share a interest of the providers may use their professional where, “the opportunity to object patient’s information, “best interest” individual” judgment to make disclosures to uses or disclosures … cannot disclosure is limited by the professional determined to be in the “best interest of practicably be provided because judgment of the health care provider. the individual.” of the individual’s incapacity or an In short, family members cannot emergency treatment circumstance.” A depend on getting information provider may determine that, in certain in this way. circumstances, severe mental illness qualifies as an emergency and that it is in the best interest of the individual for family members to be given information. To individuals The Privacy Rule permits use and The disclosure of health information Because these disclosures are who may prevent disclosure of protected health under the public interest exception could not required, they are made at the or lessen a information – without an individual’s help to prevent harm to individuals – discretion of health care providers. “serious threat to authorization or permission – for 12 including families and loved ones. Again, family members cannot count health or safety” national priority purposes. One of on obtaining health information about those is the prevention of a serious a loved one through this exception. threat to health or safety. According to Health & Human Services, “[providers] may disclose PHI that they believe is necessary to prevent or lessen a serious and imminent threat to a person or the public, when such disclosure is made to someone they believe can prevent or lessen the threat (including the target of the threat).” 13 Around the States whether existing laws have been appropriately utilized. CONTINUED FROM PAGE 9 [A]s Iowa mental health officials look for lessons…, Iowa. The state’s civil commitment standards are not unduly stringent so New York they might begin by it remains unclear why Krier’s com- New York’s highest mitment was denied. But regardless of court has issued a rul- considering whether whether Krier’s hospital release was ing that appears to add unwarranted, tragedy might also have an additional hurdle to existing laws have been been averted if Iowa’s assisted outpa- the process of securing appropriately utilized. tient treatment law had been imple- court-ordered outpatient treatment mented to its full potential. No system for severe mental illness under the can prevent all mental illness-related state’s assisted outpatient treatment about its implications and potential violence. But as Iowa mental health (AOT) law, known as “Kendra’s Law. remedies, if warranted. To receive officials look for lessons in the sense- The Treatment Advocacy Center is news and developments in the mean- less deaths of Eric Stein and Jeffrey currently analyzing the opinion and time, please visit our website and use Krier, they might begin by considering will report in a future issue of Catalyst the Sign Up button on any page. Stanley Medical Research Institute Update By E. Fuller Torrey, M.D. For the past decade, the Stanley Medical Research Institute (SMRI) has supported trials of repurposed drugs as ancillary treatment for schizophrenia and bipolar disorder. Repurposed drugs are those already approved to treat non-psychiatric conditions, including drugs available over the counter and in health food stores. SMRI has supported approximately 200 such trials and currently has 50 active trials. Out of such trials, several drugs have emerged that, when used in conjunction with the person’s regular medication, show some promise for improving the symptoms of schizophrenia and/or bipolar disorder. In order to make these results more widely known, we have summarized the clinical trials data on 10 such drugs and have submitted the summary for publication. These drugs are: • allopurinol: Used to treat gout. May be useful • minocycline: This is a tetracycline antibiotic that for selected cases of schizophrenia and is has shown promise in improving the negative being tested for the treatment of mania. symptoms of schizophrenia, especially in recent- • aspirin: Appears to be useful for some patients, onset cases. especially those with increased serum level of • mirtazapine: This is an antidepressant, now inflammatory markers. available as a generic. Has also shown promise • celecoxib: Used for arthritis and inflammatory for the treatment of the negative symptoms of conditions. Promising results for recent-onset schizophrenia. schizophrenia, but major side effects (heart, • omega-3 fatty acids (fish oil): Some evidence GI tract) suggest it should be used only when of efficacy for both schizophrenia and bipolar other drugs have failed. disorder, especially if the omega-3 contains at • estrogen and raloxifene: Used to ameliorate least 50 percent EPA. postmenopausal symptoms. Has shown • pramipexole: Used to treat Parkinson’s disease. promise for improving symptoms of Appears to be helpful for bipolar depression. schizophrenia in women. • pregnenolone: A naturally occurring neurosteroid • folate: This is a B vitamin that may be useful in sold in health food stores. May be useful for a schizophrenia, especially for individuals with a subset of patients with schizophrenia and for low folate level. bipolar depression. Dr. Torrey serves as executive director of SMRI, where he oversees groundbreaking research on the causes of and treatment for schizophrenia and bipolar disorder. 14 January 1 – April 30, 2011 The Treatment Advocacy Center extends its appreciation and thanks to all who have supported our mission with donations in memory of a loved one or a friend, including to the many who give anonymously. William & Christine Albinson, St. Louis, MO In honor of Charlotte Albinson NAMI-Moore County, Pinehurst, NC In honor of NAMI - Moore County Carolyn & Paul Baker, Atlanta, GA In memory of Brooks Dorn Joseph & Tammy Napoli, Middletown, NJ In honor of Robert Napoli Gale Barshop,Alexandria, VA In memory of my sister, Lynn Arden Nancy Navin, East Falmouth, MA In honor of Arnold Hanawalt Melvin & Gillian Clough, Murrells Inlet, SC In honor of Michael Clough Maura O’Connell, New York, NY In memory of Sheila O’Connell Carolyn Colliver, Lexington, KY In memory of Scott L. Helt Fred & Carol Olson, Langley, WA In honor of Margot Robert Coffman, New York, NY In memory of Ken Steele Charles Pisano, Enola, PA In memory of Jean Pisano Betty Corsaro, Morongo Valley, CA In honor of my son, Robert Corsaro Ginny Rather, Atlanta, GA In memory of Brooks Cameron Dorn Wink Davis, Jr. Ralph L. 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Fuller Torrey Hilary Silver, Stockton, CA In honor of Aram Silver Marguerite & Bill Hodges, Petersburg, IL In honor of Amanda Arnold Sandra Smallwood-Beltran, Miami, FL In honor of consumers and caregivers Stacy Kinnison, Alexandria, VA In honor of Eric Fargo, my son Joan Tanchek, Pasadena, CA In memory of Tom Shatford Allison Koenig, Atlanta, GA In memory of Brooks Dorn Ernest & Kathy Tharpe, Atlanta, GA In memory of Brooks Cameron Dorn Anne Lange, Norfolk, NE In honor of the Taylor family and in memory of Thor Taylor Mary Ellen Tormey, Sewickley, PA In memory of Tucson, Arizona, victims Amanda LaPera, Laguna Hills, CA In honor of my loving father Jeanne Walter, Sumner, WA In memory of Jan Geary Roy & Leanore Lembke, Havre, MT In honor of Paul Campanella Jr. John Wright, La Jolla, CA In memory of Christina Green and Laura Wilcox Neal & Naomi Lonky, Yorba Linda, CA In honor of Jeff Hoblin WTI-Molinaro Charitable Foundation Brian Marcum, Tulsa, OK In honor of Mary Kay Marcum Waterloo, IA In memory of Henry Molinaro Mary Morrow-Bax, Alexandria, VA In memory of Ray and in honor of Dan Stephen Zeliff, Atlanta, GA In memory of Brooks Cameron Dorn Elisabeth Murawski, Alexandria, VA In memory of Christina Green “Stopping Do you know a small esource Kit and foundation with The Psy chiatric Crisis R Treating a mental health focus Civil Approach to that might be the Rev olving Door - A about how interested in suppor tin our documentary g our mission? Severe Mental Illness,” were ent saves lives, Please telephone Exec assisted outpatient treatm the Torrey utive Director by donations to Jim Pavle at 703-294- made possible entirely r of 6001 to share campaign in hono your thoughts, or send Action Fund, an annual you to us an email rrey, M.D. Thank our fo under E. Fuller To suppor t through the Contact Us function ects possible. To all who made these proj ease visit on our website. Fund project, pl the ne xt Torrey Action website. Donate on our 15 Treatment Advocacy Center 200 N. Glebe Road, Suite 730 Arlington, VA 22203 www.TreatmentAdvocacyCenter.org Get Help Online Staying Up to Date – As No matter where you are or what time of Easy as 1-2-3 day or night, you will find links, tools and 1. By email – Receive periodic emails about tips for responding to psychiatric crises major news and updates. Click on Sign Up on the Treatment Advocacy Center website. on our website to provide your email address, Every element of our new Psychiatric or telephone us at 703-294-6001. Crisis Resource Kit can be found under 2. On Facebook – Join the Treatment Advocacy the Get Help tab, along with other informa- Center community, share views and news tion to help you — with other supporters, read our daily commentaries on trends and issues. • Know the laws in your state Find us on Facebook.com. • Be prepared for an emergency 3. On Twitter – Read headline news as • Find out about the options it’s breaking, learn about advocacy opportunities as they arise, get links to • Respond in a crisis research, reports and other useful materials. 16 Find us at twitter.com/treatmentadvctr.