National Empowerment Center
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Letter to the Editor at the New York Times re Article About ECT - “Kitty Dukakis, a Beneficiary of Electroshock Therapy, Emerges as Its Evangelist”
To the editor:
I’m disappointed that The New York Times downplayed the risks of this controversial procedure.
This article tells the story of a suicide attempt survivor and the need for more spaces where people can get emotional and peer support. Click here for the article.
You can learn more about the Living Room model at www.josselyn.org/living-room.
Lived Experience Research Network (LERN): Bridging research & advocacy by people with lived experience to advance social change.
LERN is a new initiative to promote service user/survivor leadership and inclusion in behavioral health and disabilities research, clinical practice, and program evaluation. LERN advocates for increased accessibility in research and evaluation settings, social justice, and policy change. We aim to strengthen ties between stakeholders: community members, advocates, policy-makers, and researchers. Click for more info...
New study shows that people diagnosed with mental health issues more likely to be the victim of homicide than those with no diagnosis
Behavioral Healthcare published an online piece by Jessica Arenella, an NYC based clinical psychologist, about her experiences with HVN training and patient work. Instead of denying the "delusions" and "hallucinations" experienced by her patients, a clinical psychologist describes the transformative and healing power gained by accepting these voices as real. [ Click to read the full text of the Behavioral Healthcare articlel ]
Daniel B. Fisher and Courtenay Harding Elected to the Board of Directors of the Foundation for Excellence in Mental Health Care
The mission of the Foundation for Excellence in Mental Health Care is to promote better mental health outcomes by identifying, developing, and sharing knowledge with the public about mental health care that best helps people recover and live well in society. The Foundation promotes improvements in mental health care by sponsoring research and the development of programs designed to help people thrive--physically, mentally, socially and spiritually. Click here to read the press release about Daniel B. Fisher (PDF, 381KB, 2 pages) and click here to read the press release about Courtenay Harding (PDF, 488KB, 2 pages). Or visit the Foundation at www.mentalhealthexcellence.org.
Inspiring recovery story of Anthony Sgarlato. "When he was in his 40s, he started volunteering as a peer counselor at Baltic Street A.E.H., a nonprofit group in Brooklyn that provides services to clients with mental illness. It was a perfect match: He helped men and women whose battles he knew well to get benefits or to find housing. He embraced the role of advocate, traveling several times to Albany to lobby lawmakers for greater benefits for mentally ill people. Mr. Sgarlato worked his way up, and now is the director of self-help and advocacy at the center." [Click here to read the full text of the N.Y. Times article]
Posted at the Mad in America website on May 4, 2012 by Bruce Levine, Ph.D.
Preface: Failing in my efforts to get this article published for the general public, apparently only here can I talk about a “cool subculture of anti-authoritarians” and how the Harrow study shows medication resisters have greater recovery.
Anti-Authoritarians and Schizophrenia: Do Rebels Who Defy Treatment Do Better?
While many Americans are troubled by psychiatry’s over medicating of children, and they doubt the legitimacy of some psychiatric illnesses such as “oppositional defiant disorder,” few question psychiatry with respect to schizophrenia, an often frightening phenomenon characterized by hallucinations, delusions, incoherent speech, and bizarre behaviors. But a major long-term study on schizophrenia challenges psychiatry’s authority here as well, and it just may get Americans to pay attention to a group of anti-authoritarians diagnosed with schizophrenia who have recovered without medication or doctors—and have become activists. Click to view full article
An In-depth Profile of the Hearing Voices Movement - http://thephoenix.com/Boston/life/128668-voices-carry
Voices of the Heart is a nonprofit that focuses on providing support through counseling, conversation and social interaction to encourage people to get help before they reach crisis, or to help them avoid hospitalization when they are in crisis. Among its services is a "peer respite program" in Hudson Falls, essentially a two-bedroom apartment where people in crisis can stay and receive support. Click here to read more.
ScienceDaily (July 19, 2011) — Patients who use anti-depressants are much more likely to suffer relapses of major depression than those who use no medication at all, concludes a McMaster researcher. Click here to read the full text of the article.
From the Winston-Salem Journal | Published: January 23, 2012
The continuing reform of North Carolina's failed mental-health care system got a boost this week with the appointment of local advocate Laurie Coker of Winston-Salem to a state legislative subcommittee that will oversee a new strategy for managing the delivery of behavioral-health care services.
Coker, who is director of the N.C. Consumer Advocacy, Networking and Support Organization, was appointed to the 24-member subcommittee that will focus on governance of local management entities, which oversee behavioral-health providers and services, the Journal's Richard Craver reported.
"Laurie is a very active advocate," Rep. Nelson Dollar, R-Wake, chairman of the subcommittee, told the Journal. "She has brought a lot of good ideas, insight and perspective to these issues."
Coker described her appointment as "a door finally being opened in the General Assembly that lends legitimacy to our advocacy. The fact a consumer advocate, and a consumer, is being included is good for the whole process."
The subcommittee's role is to monitor the 11 local management entities, known as LMEs, including CenterPoint Human Services in Winston-Salem, as they become regional managed-care organizations. These new organizations will administer the Medicaid waiver program, which will combine Medicaid and state funds for management at the community level for the first time. CenterPoint serves Davie, Forsyth, Rockingham and Stokes counties. The Medicaid waiver program, which begins in January 2013, is supposed to reduce costs and make mental-health care more reliable and consistent following years of poor or inadequate services. CenterPoint will grow significantly to handle its new responsibilities.
That's where Laurie Coker will be invaluable. She is a passionate, outspoken advocate for consumers of behavioral-health care services. As a former psychiatric nurse, she is a well-versed and tireless spokesperson for higher quality mental-health care treatment. And as a regular attendee at meetings of the legislature's Joint Health and Human Services oversight committee, she "brings unique experience and perspective to this effort," Rep. Dollar said.
We at the Journal also know Laurie Coker as a longtime persistent voice on behalf of those who struggle with mental illness, and their families. She has been critical of CenterPoint management and responsiveness to local needs. As a Managed Care Organization, CenterPoint will operate with fewer restrictions on how they manage providers of mental-health treatment, development disability and substance-abuse services. Oversight will be critical.
Laurie Coker's appointment to the subcommittee gives us hope for the eventual success of mental-health care reform in North Carolina.
Drug industry corruption, scientifically unreliable diagnoses and pseudoscientific research have compromised the values of the psychiatric profession.
Why do some of us become dissident mental health professionals? The majority of psychiatrists, psychologists and other mental health professionals "go along to get along" and maintain a status quo that includes drug company corruption, pseudoscientific research and a "standard of care" that is routinely damaging and occasionally kills young children. If that sounds hyperbolic, then you probably have not heard of Rebecca Riley, and how the highest levels of psychiatry described her treatment as "appropriate and within responsible professional standards."
When Rebecca Riley was 28 months old, based primarily on the complaints of her mother that she was "hyper" and had difficulty sleeping, psychiatrist Kayoko Kifuji, at the Tufts-New England Medical Center in Boston, Massachusetts, diagnosed Rebecca with attention deficit hyperactivity disorder (ADHD). Kifuji prescribed clonidine, a hypertensive drug with significant sedating properties, a drug Kifuji also prescribed to Rebecca's older sister and brother. The goal of the Riley parents—obvious to many in their community and later to juries—was to attain psychiatric diagnoses for their children that would qualify them for disability payments and to sedate their children making them easy to manage. By the time Rebecca was three years old, again based mainly on parental complaints, Kifuji had given Rebecca an additional diagnosis of bipolar disorder and prescribed two additional heavily sedating drugs, the antipsychotic Seroquel and the anticonvulsant Depakote. At the age of four, Rebecca was dead. [Read more...]
Here is an excerpt from the USA Today OpEd written by Joseph Rogers, executive director of the National Mental Health Consumers’ Self-Help Clearinghouse:
Studies have shown that what works is not force but access to effective services. We don't need to change the laws to make it easier to lock people up; existing laws provide for that when warranted. Instead, we need to create and fund effective community-based mental health services and supports that would make it attractive for people to come in and receive care, and that would support them in their recovery. We also must end the discrimination that discourages people from seeking help. [Click here to access the USA Today OpEd] [Click here for a version with complete references]
Daniel Hazen and Oryx Cohen Featured on Major Provider Website
Recently Daniel Hazen and Oryx Cohen co-presented on the worldwide Hearing Voices Network at an event in New York City. The Editor-in Chief of Behavioral Healthcare, Dennis Grantham, was in the audience and wrote a fantastic article about what he learned. It is now the lead story of their publication, and you can check it out at: www.behavioral.net
Peer-support approach challenges long-held views of mental illness
GLENS FALLS, N.Y.
Click here to read this New York Times cover story on the recovery of Dr. Marsha B. Linehan, pioneer in the field of Dialectical Behavioral Therapy and counseling people in severe emotional distress.
Boston Globe, January 13, 2011
It’s pretty clear by now that nobody is going to do anything about the insane depths to which political discourse has plummeted in this country.
Or about the nation’s gun laws, for which insanity is too weak a word.
Sad to say, there’s little hope on either score because our worst broadcast offenders and a legion of gun rights absolutists have played the politicization card, accusing anybody who doesn’t agree with them of using a national tragedy to score partisan points. And they’re getting away with it.
So, that’s that.
But one kind of insanity is still on the table in the wake of Jared Loughner’s Tucson rampage: The literal kind.
I’ll take it, because we really need to talk about how we deal with mental illness in this country.
One of the few things on which everybody agrees at this point is that Loughner had come undone. Officials at his community college saw it, directing him to get help if he wanted to stay enrolled. Apparently, he didn’t.
There was a time when people like Loughner, showing signs of deep psychosis, were far more likely to be institutionalized, even against their will.
Should we go back to those days? No way, says Dr. Daniel Fisher, 67, and he should know. The psychiatrist is president of the National Empowerment Center, a Lawrence advocacy group for people recovering from mental illness. He was institutionalized himself in his 20s. [By Yvonne Abraham, Globe Columnist / January 13, 2011 (Click for more)]
The message that “mental illness is just a disease” isn’t reducing stigma. It’s actually making the stigma worse... Instead of emphasizing how different people with mental disorders are, especially when the scientific field has many open questions, messages should acknowledge that everyone struggles with ups and downs. [Click here to read the full article]
Four years ago, Tomicia R. needed help. In addition to being overcome by grief after the death of a son during childbirth, she was blacking out. Accompanied by her mother, she went to the local hospital's emergency room in New York's Hudson River Valley. A medical evaluation could find no reason for the blackouts, and she was directed to the psych ER for further evaluation. Meanwhile her mother was sent home while she waited to see a social worker. It turned into a six-hour wait, short by some ER standards, and all the while Tomicia, 32, remembers feeling invisible. [To read the full article, click here]
Dan Fisher was a guest on the VoiceAmerica Variety Channel with host Clint Maun, CSP. The topic of the radio show was: How to Manage Your Own Health Care. Managed care is designed to reduce unnecessary healthcare costs through a variety of incentives, review programs and selective provider contracting. Whereas managed care plans may benefit many consumers, there are serious concerns that cost controls may be denying medically necessary services to some categories of patients or providing low quality care. Our guest, Dr. Daniel Fisher, is an advocate of empowering individuals to “self-manage their own care.” Dr. Fisher believes that consumers can participate in the implementation of their healthcare decisions and outcomes. He’s here to provide insight as to what steps we can take to assure we receive the timely quality care we need. [To listen, click here]
Currently, Americans who have major mental illnesses die an average of twenty-five 25 years earlier than the general population (NASMHPD, 2006 and other sources). They experience the largest health disparity in the United States. Sixty percent of premature deaths are due to medical conditions such as cardiovascular, pulmonary and infectious diseases which are frequently caused or worsened by controllable lifestyle factors (physical activity, smoking, access to adequate healthcare and prevention services, diet and nutrition, and substance abuse as well as others). In responses to these alarming statistics, the Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services which supports the annual Alternatives Conference to provides a forum for peers from all over the nation to meet, to exchange information and ideas, and therefore choose to offer effective proactive strategies through a health and wellness screening service. The screening was conducted on October 20-30, 2009 and was planned, coordinated and managed by peer provider staff from the Institute for Wellness and Recovery Initiatives at Collaborative Support Programs of New Jersey. The event was staffed by peers with nursing and health care backgrounds. [Click here to read the full report] (PDF, 56KB, 6 pages)
The additional research on treatment options will not be able to meet its stated aim of improving mental health care treatment outcomes, however, unless it includes a range of options, maintain some mental health experts. For psychiatrist Daniel Fisher, M.D., Ph.D., those options should include patient-centered care and the use of “patient peers” in treatment. [Click here to read the article]
A radical US advocate for psychiatric patients' rights brings to the UK his first-hand message that a diagnosis of mental illness is not a life sentence "Dan Fisher, a prominent psychiatrist who is advising the Obama administration on mental health issues, has been on a personal mission for two decades to change the way wider society understands and reacts to mental illness. An advocate of the "recovery model" – which posits that a diagnosis of mental illness is not for life, and that people can recover completely – Fisher is an outspoken and controversial figure in the US, campaigning vigorously for the rights of people diagnosed with a mental illness." [Click to read the full article]
The discrimination which patients suffer at the hands of the media is of a double-edged kind. Whenever a tragedy such as what happened in Newtown, Connecticut occurs, the networks and news outlets fall all over each other portraying, "mental illness," as the culprit behind the tragedy. One would think, (would we not,) that this alone is a sufficiently grievous affront to the dignity of patients? But, no, there's something else going on too, which you never hear about: the result when some patient who writes, submits a certain account they've written to any major publication for publishing. If this patient has written a piece publicizing the existence and history of the mental patients' Movement and reveals that they, themselves, are a patient who's participated in this historical event, their manuscript goes nowhere except into the contents of the publisher's File 13. In other words, the piece never sees the light of day.
The answer to this quandary can be found in the makeup of all social and political Establishments. Longstanding organizations such as the Mental Health Association and the Alliance for the Mentally Ill, constitute the mental health Establishment, and are known for their demonization of the patients' Movement, with its emphasis on rebellion against mainstream psychiatric treatment.
Now let's take a look at the media, more often than not a sucker for any Establishment. The press has been only too happy to do the bidding of the mental health Establishment, in this Establishment's quest to smother the will of so-called, "rebellious," patients. Undoubtedly, Mental Health Association and A.M.I. members are tickled to death with the media's blackout of public awareness of existence of the psychiatric inmates' Movement. For their part, media representatives are probably also concerned about not publicizing any perceived reason for people who genuinely need help, to not get it.
One thing which I think is certain is that disgruntled patients, aggrieved at the theft of their substantive lives by the circumstance of having mental problems, as well as by the system designated to, "treat," this sad predicament, are never going to cease protesting and obstructing, as they should not. Stigma exists for a convenient reason, and that is that it is the means by which any control freak who fancies themselves a mental health professional, can interfere in a patient's life legally. The media's horrendous treatment of patients is an example of the extent to which stigma permeates every facet of every patient's life. There's never going to be peace at the table until patients are free of this stigma, and of the kneejerk temptation everyone has to control a patient's life.
It has been pointed out to me that the media's prerogative to be exclusionary, is Constitutionally protected. Accordingly, neither litigation nor legislation can be used to remedy the censorship I am decrying here. But we all know that the U.S. Constitution also guarantees the right of any citizens who may be aggrieved, to make their grievances known. Therefore, I am proposing that we mount a campaign to pressure the media to cease slandering us and censoring us at the very same time, of its own free will.
Are you a patient who writes? I have put together a 30-page documentation of censorship of patients by the print media. These are patients who attempt to publicize the existence of the psychiatric inmates' Movement and are censored each time, regardless of how refreshing, profound, and libertarian this Movement is.
Are you interested in seeing a copy of this compilation? I've paired numerous articles I've written over a period of years, with their matching rejection notices, and I will gladly send you a copy if you'd like. I will incur the costs of photocopying and mailing to you. Simply contact me at:
AUSTIN, Texas Renowned mental health experts and consumer advocates Dr. Daniel Fisher and LaVerne Miller, Esq., have been appointed to the National Advisory Council of the Hogg Foundation for Mental Health.
The 10-member council advises foundation staff on strategic direction and potential funding initiatives. Council members have Texas-based or national expertise in mental health, consumer advocacy, philanthropy and other fields related to the foundation's mission of promoting the mental health of all Texans.
"We are honored and privileged that these prominent, influential and informed leaders have agreed to serve as advisers to the foundation," said Executive Director Dr. Octavio N. Martinez Jr. "Their knowledge and wisdom will help shape the foundation's initiatives and help to promote consumer, youth and family engagement in Texas."
Fisher is a board-certified practicing psychiatrist and executive director of the National Empowerment Center. He has recovered from schizophrenia, dispelling the myth that people do not recover from mental illness. His recovery and work in the field were recognized by his selection as a member of the White House Commission on Mental Health.
He co-developed the Empowerment Model of Recovery and the PACE/Recovery program to shift the system to a recovery orientation. He conducts workshops, gives keynote addresses, teaches classes, and organizes conferences for consumers/survivors, families and mental health providers to promote recovery of people labeled with mental illness by incorporating the principles of empowerment. He helped organize the National Coalition of Mental Health Consumer/Survivor Organizations, a national network of mental health consumers, and through that role has consulted with the Obama administration.
Fisher is a recipient of the Clifford Beers National Mental Health Association Award and the Bazelon Center for Mental Health Law's Advocacy Award. He received his M.D. from George Washington University and completed his residency at Harvard Medical School. He also has a Ph.D. in biochemistry from the University of Wisconsin and an AB from Princeton University.
Miller is an attorney and consultant whose career has centered on mental health and social justice. Following years of severe depression, Miller realized that finding meaningful work and peer support were critical for her own recovery as well as for many other consumers.
She works with Policy Research Associates and the federal Center for Mental Health Services to increase consumer, youth and family engagement and involvement in state initiatives and activities supported by federal mental health transformation grants. From 1996 to 2008 she was director of Howie T. Harp Peer Advocacy Center in Harlem, which trains consumers with histories of homelessness, mental illness and incarceration and promotes recruitment, hiring, retention, integration and advancement of consumers in the workforce.
Miller previously was an assistant district attorney in Manhattan, a community organizer and housing advocate in Queens, and co-chair of the New York City Federation for Mental Health, Chemical Dependency, Mental Retardation and Developmentally Disabled. She is a graduate of the University of Pennsylvania and Northeastern Law School.
The Hogg Foundation was founded in 1940 by the children of former Texas Governor James Hogg to promote improved mental health for the people of Texas. The foundation's grants and programs support mental health consumer services, research, policy analysis and public education projects in Texas. The foundation is part of the Division of Diversity and Community Engagement at The University of Texas at Austin. [View as Article...]
Open letter to Oprah Winfrey in response to her program about “The 7-Year-Old Schizophrenic”
From: Paul Baker - Coordinator of INTERVOICE, Spain - 10/19/2009
We do so in the hope we can provide a more hopeful and positive alternative to the generally pessimistic picture offered by the members of the mental health community featured in the program, and in the accompanying article on your website.
What upset us most and moved us to write the letter, is that, as a result of the program, parents of children who have similar experiences to Jani will be left with the impression that they are powerless and will not be able to do anything constructive to help their children to come to terms with their experience of hearing voices.
For it is simply not true that nothing can be done.
We say this because we have been researching and working with adults and children like Jani and their parents for the last twenty years, and in doing so have reached very different conclusions from the ones reported on your program.
We write this letter primarily for parents and care givers, in the hope that it will enable them to develop a new and more empowering way of thinking about their children's experiences, and that it will help them to find ways to help those children with their emotional development and with recovering from being overwhelmed by hearing voices.
Unfortunately, there is very little practical advice available about children who hear voices which addresses the needs of parents or other members of the family. This is a shame because they are the most important form of support to such children. So, we want you to know that there are some simple commonsense things that parents can do to help children who hear voices - even children in seemingly hopeless situations, like Jani. [Read full letter with signatures from 136 people in 16 countries]
Many cultures find the American insistence on constant cheerfulness and pasted-on smiles disturbing and unnatural. Occasional, situational sadness is not pathology -- it is part and parcel of the human condition, and may offer an impetus to explore a new, more fulfilling path. [Read more at: www.huffingtonpost.com/andrew-weil-md/are-you-depressed-or-just_b_307734.html]
In their chauffeur-driven limousines the celebrity guests headed back to their mansions after the premiere of new Oscar favourite The Soloist.
But as they drove off towards the Hollywood hills the real star of the $150m movie set off in a different direction - back to a homeless shelter on the edge of one of Los Angeles' most dangerous ghettos. [Click to view story]
People with psychiatric illness get better care from other people with a psychiatric history than from traditional doctors and psychologists in a traditional medical setting, according to Daniel B. Fisher. [Click to read full article]
Congratulations on “Psychiatric peer review touted” (Telegram & Gazette, July 20), the comprehensive article on proposed peer-run crisis alternatives for people experiencing emotional distress, which would help reduce the strain on emergency departments and inpatient hospitals. David Matteodo, a lobbyist for private psychiatric hospitals, is quoted as saying alternatives to psychiatric hospitals should be regulated. [Read more...]
Why some mentally ill patients are rejecting their medication and making the case for 'mad pride.'
We don't want to be normal," Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn't take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still. [Click to view full NEWSWEEK article published May 2, 2009]
A talk with Judi Chamberlin
Facing death, a plea for the dignity of psychiatric patients
Interview by Carey Goldberg:
"NOTHING ABOUT US WITHOUT US." That is the motto of a grass-roots
movement that has carried various names over the last generation, but has always
revolved around a single principle: self-determination for people diagnosed with
mental illness. Call them psychiatric patients or consumers or survivors, they
are fighting together to gain more control over their treatment, and more say in
the mental health system overall. And they have won some striking successes in
recent years, gaining more input into official policy and creating new jobs for
people who, 12-step-style, have recovered from the worst of their illness and
now want to help others in crisis.
Every second Saturday, MindFreedom International executive director David Oaks hosts MindFreedom Free Live Web Radio on BlogTalk Radio with topics that include: Mad Pride, alternatives to traditional mental health care, and campaigns for human rights in psychiatry. On his March 14, 2009 show, he interviewed two special guests:
DAN FISHER, MD psychiatric survivor and psychiatrist, was one of two key advisors to Barack Obama's presidential campaign about mental health issues. Dan will talk about his goals for the mental health system under the Obama administration, and about his recent international organizing in Australia/New Zealand.
JUDI CHAMBERLIN is an historic leader in the movement led by mental health consumers and psychiatric survivors. Judi has publicly announced that because of severe health problems she is now in hospice with a life expectancy that is not very long. Judi will try to answer your questions on air, but if her health prohibits this we will play a specially-recorded message from Judi to you.
DAVID W. OAKS has worked for more than three decades as a human rights activist in the field of mental health. He directs the nonprofit MindFreedom International.
Dan, Judi and David all met in the "mad movement" in the 1970's in Massachusetts. On the show, they also exchanged a few stories about our roots.
Ruby was the lead plaintiff in Rogers v. Okin, a 1979 case brought before the Massachusetts courts. The landmark ruling established key rights for the mentally ill in Massachusetts who until then could not refuse medical treatment once they were committed to a State facility.
Judi Chamberlin, co-founder of the Ruby Rogers Mental Health and Advocacy Center in Somerville, MA speaks of Ruby Rogers:
Ruby Rogers; helped win key rights for mentally ill
By Bryan Marquard - Globe Staff / February 20, 2009
In Turners Falls, nearly 100 miles west of where she spent decades confined
in Boston psychiatric facilities, Ruby Rogers died quietly in a nursing home, a
relatively anonymous end for a woman whose name is routinely invoked during
Massachusetts court hearings involving the mentally ill.
Jonathan Delman Receives Robert Wood Johnson Foundation Prize for Local Innovation in Improving Health and Health Care
The Robert Wood Johnson Foundation recently announced the 2008 recipients of the Community Health Leaders (CHL) Awards. The CHL Award honors unrecognized individuals who overcome daunting odds to improve the health and quality of life for underserved men, women and children in communities across the United States.
Jonathan Delman, Executive Director, Consumer Quality Initiatives, Roxbury, Massachusetts and nine others were selected because they "dedicated themselves to tackling some of the most intractable problems affecting the health of their communities". They join a distinguished list of 150 previous award recipients.
"Jonathan Delman has struggled with mental illness his entire adult life. Despite facing everyday stigmas surrounding his mental illness, Delman has chosen to help others like himself to improve their experiences. He founded Consumer Quality Initiatives, which partners with consumers and academics to conduct high-quality research on people’s experiences with mental health services. He then provides the results to policy makers and service providers to help them improve services. His work has changed the way the Massachusetts Department of Mental Health cares for residents with mental health issues."
Click to view video]
The voices were distracting her. O'Rourke, counseling services coordinator at the Kennedy Center, was one of many center employees who participated in "Hearing Voices," a workshop designed to show the center's staff what life is like for someone with auditory hallucinations. [Click for more on Hearing Voices]
By Daniel Fisher, M.D., Ph.D. - May 23, 2008
I spent three very busy, exciting days in Melbourne, Australia, in connection with a conference on recovery. From May 7 through May 9, 2008, I was immersed in the world of the Australian consumer movement as it is gaining its voice of recovery.
The conference was sponsored by a psychosocial provider organization, Vicserv. The energy and creative contributions to the conference came from us -- the consumers. This phenomenon was recognized by a provider who was overheard telling another provider she was glad there were so many consumers attending, but did not come to hear them speak up so often. These providers were used to consumers being seen but not heard. Out of the 800 attendees, perhaps 100 were self-disclosed consumers. In addition there were scores of others who only felt comfortable to disclose privately to myself or other consumer speakers. They were fearful that a public disclosure would have a negative impact on their career. One such consumer/provider suggested a national day of disclosure to reduce the stigma associated with the label.
My involvement began the day leading up to the conference. I wrote a piece for the Vicserv publication, Paradigm, about the importance of the consumer voice in systems transformation. [More on Dan Fisher's trip to Melbourne]
My reflections on Alternatives 2007, by Dan Fisher
“We are the light, we are the change,” summarized my feelings about this excellent Alternatives. These are the words that our institute ended with. As those of us on the panel spoke the words, “we are the light, we are the change,” we reached out to the audience and one by one they reached back and held our hands. They picked up the chant. They in turn reached out and held the hands of their neighbors, who in turn picked up the chant. Large smiles spread across our faces. Then a Latina consumer led us in the same chant in Spanish. “Somos la luz, somos el cambio.” As we all entered into the Spanish version, the electricity between us intensified. Soon you could see by our expressions we were all feeling a new sense of joy. I could feel words bringing all my senses together, my feelings were welling up, my heart was brimming over, my thoughts were free to flow, and my skin felt the warm glow of spirits meeting spirits. We all ended by hugging and holding the feelings. I truly feel that the spirit of those words reflected the feeling of Alternatives 2007.
The institute “Getting a place at the table and gaining a voice” was presented by Joe Rogers, Sharon Kuehn, Lauren Spiro and myself. We also had two international consumer leaders who joined us by internet: Jenny Speed, Deputy Director of the Australian Mental Health Consumer Network, and Anne Beales, Management committee member of the National Survivor User Network (of England). The institute started with each of us sharing our story of how we came into the movement and the work we do. [More on Alternatives 2007]
By Dan Fisher - December 10, 2007
A very effective consumer advocate, Anne Beales, whom I met in Canada in August, 2007 has been awarded the important MBE by Queen Elizabeth. Anne has coordinated the formation of a national network of mental health consumers across England similar to the National Coalition of Mental Health Consumer/Survivors we are forming here. Anne is working with me and leaders from other countries to form an International Coalition of Mental Health Consumer/Survivors.
The following is a news release of the event:
Brighton [UK] -based campaigner Anne Beales has been awarded an MBE for services to mental health. A long-standing campaigner for mental health, Anne has fought tirelessly over many years to improve access to mental health services and the rights of those with mental health needs. (Click for more on Anne Beales)
A history of mental-health treatment, told through lost souls, at the New York Public Library. A New York Times Article, December 7, 2007. The Lives They Left Behind - Suitcases from a State Hospital Attic, View online exhibit from the Community Consortium.
By Carey Goldberg, Boston Globe Staff | June 8, 2007
TAUNTON -- Years ago, Jess Zaller came to the Pathways mental health program as a day patient. In and out of institutions, he had fought mental illness since childhood. His life felt like a nightmare of chaos and despair.
Zaller, 45, was back in a Pathways therapy group last week, but this time as a leader, listening carefully as members laid bare the pain of their fears and compulsions. When he delicately pointed the way, it was often in the first person, using his own hard lessons learned:
"Our lives are at stake," he told members. "It takes a lot of courage to walk a path of recovery, and each one of us develops our own path."
Massachusetts is beginning to develop a corps of people like Zaller who have been through the depths of schizophrenia, bipolar disorder, or depression, and recovered enough that they can help others with mental illness.
Such comradely aid has long been exchanged informally, or scattershot at mental health venues. But now the state has launched a new job category -- certified peer specialist -- meant to formalize these relationships and gradually, they hope, get peer counseling reimbursed routinely by insurers and Medicaid.
"There's something about receiving support from someone who's gone through exactly what you're going through now that people find invaluable," said Michael O'Neill, the state's assistant commissioner for mental health services.
A few handfuls of Massachusetts residents, including Zaller, have completed the eight -day training session and exams to be certified as peer specialists. On Monday, they are to be recognized at a State House ceremony.
The new field must work through many possible problems, from the potential for relapse among specialists to the potential for resistance from more traditional mental health staffers. But O'Neill expects the state's corps to grow to hundreds.
Massachusetts is redesigning its mental health system to be more user-friendly, he said, and "peer support is a fundamental element of that redesigned system." In the coming months, Massachusetts will be setting up six regional centers where peer specialists will work with clients and support each other in their fledgling vocation, O'Neill said .
The concept has taken off in 30 states. In half a dozen, Medicaid, the public insurance program for the poor and chronically ill, pays for the services, said Paolo del Vecchio, associate director for consumer affairs at the federal government's Center for Mental Health Services.
"Over the past five years, we've really seen the development of a new mental health profession emerging," he said.
The growth of the peer specialist profession comes against the backdrop of a sweeping national shift toward greater optimism that those in dire condition may improve or recover, and toward giving people with mental illness more control over the help they get. People with mental illness are not passive patients, the thinking goes; they can help themselves and as they get better, they can help others .
In their work, peer specialists are expected to share their stories of recovery when relevant to their clients. They may have learned skills worth sharing, or simply inspire hope by being much better than they once were.
The work goes beyond a typical speaker at a 12-step meeting.
It can include helping a patient in a psychiatric hospital make the shift back to living at home, or supporting an emergency room patient in crisis. A specialist might remind a team of clinicians that their patient is in a kind of hell, or take a lonely client out for pizza.
Early research, which is just beginning to accumulate, suggests that peer specialists may be particularly useful with patients who would normally resist help from the mental health system, said Larry Davidson, a Yale professor who conducts studies on peer specialists.
People with mental illness sometimes feel disliked by the professional staff who treat them, he said; it appears that with peers, "they feel less disliked and more understood."
Studies show that "people in recovery can provide services at least as well as people who don't have that experience," Davidson said. Hard data are being collected now on whether they offer "value added," he said.
Anecdotal reports of successful work by peer specialists abound. In Georgia, which has 340, they have proven particularly useful in helping discharged state hospital patients build new lives at home, said Gwen Skinner, the state's top mental health official.
Though the new field is growing, resistance remains, Davidson and others said. They worry that staff and clinicians without mental illness could feel threatened by the influx of newcomers whose experience with illness is considered an asset. Traditional staff could also worry about being replaced by peer specialists. Certified peer specialists are supposed to earn a typical mental health staff salary of $12 an hour to $15 an hour on an entry level, said Deborah Delman executive director of M-Power, the Massachusetts mental health advocacy group that runs the peer training courses. But some peer workers who are not certified may earn less, she said.
After they are certified, Massachusetts peer specialists will continue to be overseen by The Transformation Center, a statewide training organization that is supposed to ensure they maintain ethical standards and continue their education.
The peer specialists also pose staffing issues. What if, for example, a peer specialist works with patients at a state hospital, then has a relapse and is rehospitalized there, then resumes the job? Boundaries and definitions may get fuzzy; confidentiality may become a concern.
Also, Davidson said, if supervisors view their patients as problems, then adding peer specialists to their staff is asking for more problems. The challenge, he said, is for them to shift to thinking about all people with mental illness as "having assets and strengths to help solve problems."
Judging by responses in Zaller's small therapy group in Taunton, some people with mental illness immediately see the benefits of being helped by a peer.
"He's not looking at us through a book," said one group member, Diane Silvia. "He can relate to us, and we can relate to him."
Carey Goldberg can be reached at email@example.com - © Copyright 2007 Globe Newspaper Company.
Experts like to debate the effectiveness of new drugs, but they overlook a key element of recovery. February 6, 2006 issue of Newsweek, by Jay Neugeboren
Michael Hartman Appointed Commissioner of Mental Health, & Beth Tanzman Named Deputy Commissioner of Mental Health
Waterbury, Vt. – Agency of Human Services (AHS) Secretary Cynthia D. LaWare today announced several new appointments in the Agency. Michael Hartman was appointed Commissioner of the new Department of Mental Health (DMH), Beth Tanzman was named Deputy Commissioner of Mental Health and Brendan Hogan will serve as the new Deputy Commissioner of the Department of Disabilities, Aging and Independent Living (DAIL).
"These new appointments will help make Vermont stronger than ever in the service of individuals with mental illness, individuals with disabilities and our aging population," said Secretary LaWare. "In his role as Deputy Commissioner, Michael Hartman has impressed policy makers, service providers and consumers alike with his wealth of experience and thoughtful, decisive leadership style. I know he will make an outstanding Commissioner of Mental Health. And Michael will be ably assisted by Beth Tanzman, a proven leader whose professional credentials, determination and patience has almost single-handedly kept the Vermont State Hospital Futures Project moving forward. Brendan Hogan's in-depth knowledge of Medicaid and Medicare and his experience at the Office of Vermont Health Access (OVHA) will be a tremendous asset to DAIL and the individuals they serve."
Hartman was appointed Deputy Commissioner for Mental Health, in December, 2006, when Mental Health was under the Vermont Department of Health. Prior to that appointment, he served since June 2000 as Director of Community Rehabilitation and Treatment/Intensive Care Services at Washington County Mental Health Services, Inc. in Montpelier. He was also the Executive Program Director of Collaborative Solutions Corporation. CSC is the new service provider that established Second Spring, an 11 bed Community Recovery Residential facility in Williamstown, Vermont, which opened this spring. Since 1998, he has been an Adjunct Faculty member of the Southern New Hampshire University Program in Community Mental Health, Burlington site. Hartman has over 25-years of experience in the mental health and social work arena in Vermont. Hartman received his BA from Goddard College in 1982 and his Masters in Social Work from the University of Vermont in 1998. He is a resident of Montpelier.
Beth Tanzman has worked and consulted in public mental health systems for 18 years. Since November, 2005 she has directed the Vermont Mental Health Futures Project, a strategic planning process for the continued transformation of Vermont's public mental health system towards a consumer-directed, trauma-informed, and recovery-oriented system of mental health care. In this leadership role, Tanzman works collaboratively with all stakeholders in Vermont's mental health system to replace the existing 54-bed inpatient capacity of the Vermont State Hospital (VSH) with a new array of inpatient, rehabilitation, and residential services for adults. Prior to this, she served as director of Vermont's Adult Community Mental Health Services where she was a key leader in Vermont's mental health system change efforts. Before working for the State of Vermont, Tanzman was a consultant and researcher with the Center for Community Change through Housing and Support. Tanzman served as Chair of the National Association of State Mental Health Program Directors (NASMHPD) Adult Services Division (2000-2002) and is active in the national Evidence-Based Practices research and implementation. Tanzman received her BA from the University of Vermont in 1984 and her Masters in Social Work from State University of New York, Albany in 1988. She resides in Burlington.
"Grading the Evidence for Consumer-Driven Services." The UIC National Research and Training Center is offering this workshop as part of its National Web-Based Education Program. The speakers, Drs. Judith Cook, Jean Campbell, and Lisa Razzano discuss the evidence base for consumer-operated, delivered, and centered services, where people control the kinds of help they get, from whom, and in what settings. They present the evidence grading pyramid, along with the specific levels of evidence for models such as recovery self-management, drop-in centers, advance directives, and self-directed care. A special focus of this web cast is on the results of the national multi-site research study of consumer-operated service programs or COSP, directed by people in recovery and funded by CMHS. To view the web cast and download transcripts and slides, visit the Center's website at: www.psych.uic.edu/uicnrtc/webcast1.htm. The Center is supported by NIDRR and CMHS.
Congressman Steny H. Hoyer (D-MD) was awarded the George Bush Medal for the Empowerment of People with Disabilities on July 25th, 2005, at the National Council on Disability's 15th Anniversary Observance of the Americans with Disabilities Act (ADA). Former President George H.W. Bush presented him with the award at an evening gala at the Kennedy Center for the Performing Arts in Washington, DC. In recognition of her years of cross disability advocacy, NEC's Judi Chamberlin was an invited guest. On the actual anniversary date, July 26th, NCD sponsored a seminar consisting of a number of workshops addressing various aspects of the ADA, at which a number of government officials spoke, including A. Kathryn Power, Director of the Center for Mental Health Services.
State Mental Health Commissioners Say Seclusion and Restraint are Safety Interventions, Not Treatment Interventions
On July 13, 1999 the membership of the National Association of State Mental Health Program Directors (NASMHPD) approved a position paper on seclusion and restraint. The first two and a half paragraphs of the position paper read as follows:
NASMHPD Position Statement on Seclusion and Restraint"The members of the National Association of State Mental Health Program Directors (NASMHPD) believe that seclusion and restraint, including "chemical restraints," are safety interventions of last resort and are not treatment interventions. Seclusion and restraint should never be used for the purposes of discipline, coercion, or staff convenience, or as a replacement for adequate levels of staff or active treatment.
The use of seclusion and restraint creates significant risks for people with psychiatric disabilities. These risks include serious injury or death, retraumatization of people who have a history of trauma, and loss of dignity and other psychological harm. In light of these potential serious consequences, seclusion and restraint should be used only when there exists an imminent risk of danger to the individual or others and no other safe and effective intervention is possible. P> It is NASMHPD's goal to prevent, reduce and ultimately eliminate the use of seclusion and restraint..."
To request a copy of this position paper contact the National Association of State Mental Health Directors' at 703-739-9333 or write them at 66 Canal Center Plaza, suite 302, Alexandria VA 22317 or you can contact them via their website at http://www.nasmhpd.org
State Medical Directors' Council Says Seclusion and Restraint are Security Procedures and are NOT Medical Treatments
During February 18 -19 1999 a meeting was held in Atlanta Georgia. Participants included two state mental health commissioners/directors, five state medical directors, two representatives from state offices of consumer affairs, and representatives from other NASMHPD divisions, affiliates and staff. A report on reducing the use of seclusion and restraint was generated and a final draft was approved by the Medical Directors Council and published in July 1999. The paper is called, "Reducing the Use of Seclusion and Restraint: Findings, Strategies and Recommendations." To request a copy of this position paper contact the National Association of State Mental Health Directors' at 703-739-9333 or write them at 66 Canal Center Plaza, suite 302, Alexandria VA 22317 or you can contact them via their website at http://www.nasmhpd.org
Under the section of the report titled "Problem Statement: Definition of the Issues and Consensus Reached by Participants," the following was written on pages 3 and 4:
"Definition of the Issues
The issues raised by the use of seclusion and restraint in the mental health system go far beyond a narrow focus on the techniques involved in the use of these interventions. The overutilization of seclusion and restraint can be seen as a symptom of a larger problem in the culture of the clinical environment. An effective approach to this issue will, therefore, need to include consideration of clinical and cultural issues."
"Misapplication of the techniques of seclusion and restraint creates safety problems for both the individual and the staff involved. The rate of work-related injuries is higher in mental health than in the construction industry, and more staff injuries occur during the implementation of seclusion and restraint than occur from unexpected assaults. Thus this report will take a broad, inclusive approach to the issue of the use of seclusion and restraint, attempting to convey some of the complexities involved. The report begins with a discussion of prevention and early intervention, and then identifies standards for safe and effective implementation."
"In a fundamental way, this issue is about how mental health systems treat the people they serve. If the goals of the public mental health system are to treat people with dignity, respect and mutuality, to protect people's rights, to provide the best quality care possible, and to assist people in their recovery, any use of seclusion and restraint must be rigorously scrutinized. Many people enter the mental health system for help in coping with the aftermath of traumatic experiences. Others enter the system in hope of learning how to control symptoms that have left them feeling helpless, hopeless, and deeply fearful. Still others enter the system involuntarily. In these cases, the need for treatment has been expressed by the committing authority, not by the recipient. Any intervention that recreates aspects of previous traumatic experiences or that uses power to punish is harmful to the individuals involved. In addition, using power to control people's behavior or to resolve arguments can lead to escalation of conflict and can ultimately result in serious injury or even death."
"Consensus Reached by ParticipantsGiven that seclusion and restraint are virtually always experienced by the individuals involved as traumatic, put both staff and patients at risk, and can seriously jeopardize the treatment milieu, are there ever instances when these interventions are justified? It was a consensus of those present that seclusion and restraint are justified only if they are being used for the clearly defined purpose of maintaining safety and if all other, less intrusive interventions have failed. Clearly, these factors will vary according to setting, with acute care and emergency room settings presenting a different challenge from long-term care settings. For example, substance abuse is more likely to be a complicating factor in emergency room settings than in long-term care facilities. Similarly, the justification for the use of seclusion and restraint may vary over time even within the same setting, depending on what other alternatives have been tried and on other factors affecting the basic safety of the unit."
"Regardless of the context, is critical that seclusion or restraint be used only as a "last resort measure" to maintain safety. Substantial care must be taken to define the situations in which safety concerns are strong enough to justify the use of seclusion and restraint. Seclusion should be used only in situations of imminent risk to self or others or serious disruption to the treatment milieu, restraint only in situations of imminent risk. Neither technique should ever be included as part of an individual's treatment plan, or as part of the day-to-day management of a unit. Finally, these interventions should under no circumstances be used as a threat, either implicitly of explicitly, nor should they ever be used as punishment."
"Seclusion and restraint should be considered a security measure, not a form of medical treatment. However, given the medical risk of serious injury or even death posed to recipients, the use of seclusion and restraint should be medically supervised."
"In addition to seclusion and restraint, it is imperative that other forms of control be closely monitored to ensure that one potentially abusive practice is not substituted for another. In particular, the use of emergency psychotropic medications should be closely monitored. When used properly, psychotropic medications can be helpful in treating agitation due to mental illness, allowing a complete clinical and medical assessment to be done. However, drugs should not be used solely to immobilize or sedate people as a mechanism for control. Over-medication and polypharmacy are of particular concern with children. Similarly, the use of law enforcement and stringent behavioral programs, while appropriate under some circumstances, should always be monitored to prevent misuse."
Should Forced Medication be a Treatment Option in Patients with Schizophrenia? [more]
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