NEWS, COMMENTARY, AND ARTS BY PSYCHIATRIC SURVIVORS, MENTAL HEALTH PEERS, AND OUR FAMILIES
VOL. XXXIII NO. 2
FROM THE HILLS OF VERMONT
A Rally for Rights
Dozens of survivors turned out in July for the annual Mad Pride march and rally in Montpelier. For full coverage, see pages 16-17.
(Counterpoint Photo: Anne Donahue)
State OKs, Then Delays, on ECT WATERBURY – The Department of Mental Health approved a draft policy in March from Springfield Hospital for a new electroconvulsive therapy service. The policy includes steps for seeking authority to perform ECT involuntarily on a person who is competent to make decisions but has refused the treatment. The policy also allows for consent to ECT by the person’s next of kin for a person who is not competent, and for ECT to be used with children under age 18 – something not previously permitted in Vermont. Department staff verified in late August that the hospital’s draft policies had been accepted and DMH was only awaiting a final version, but Commissioner Melissa Bailey later said the department was now reviewing concerns raised in questions from Counterpoint.
“At this point we spoke with Springfield Hospital and they are not planning on performing ECT until we have everything resolved,” Bailey wrote in an August 31 email. She did not know about the new ECT program until July 2, internal DMH emails indicate. Bailey said that DMH legal and program staff would be meeting with Al Gobeille, secretary of the Agency of Human Services, during the first week of September to discuss the issues that had been raised. Counterpoint went to press that same week, and no report of a meeting outcome was made available in time for this article. Neither Springfield Hospital Chief Executive Officer Timothy Ford nor the hospital’s medical director for psychiatry, Theodore Miller, MD, responded to requests by Counterpoint for comments.
ECT is widely referred to as a highly controversial treatment for psychiatric illness, primarily because of debate over the extent of memory loss that can occur as a result of the treatments. According to DMH materials, the treatment involves sending an electrical current through the brain to cause a seizure. Because of the electrical current used, it is frequently referred to as electroshock therapy, or simply shock. Although ECT is most commonly known as a treatment for severe depression, DMH, citing “strong consensus in the field,” identifies it as appropriate for use for mania and schizophrenia also. A law passed in 2000 directs DMH to provide oversight of ECT in Vermont, including establishing uniform informed consent (Continued on page 8)
Is Peer Support at Risk as It Grows? Some Fear Mutuality Being Lost When Incorporated in Mental Health System By ANNE DONAHUE Counterpoint Can peer support offered within the mental health system still allow for the mutuality of relationships that is the core of peer support? Or can it only happen within peer-run agencies? Is certification for peer support specialists a step forward that will expand access and improve professional acceptance? Or does even being paid for providing peer support destroy the level playing field of a relationship between peers? As these questions are being raised across the
Mad Pride Takes to Streets In Montpelier
state and the country as peer support becomes more broadly recognized for its benefits, some psychiatric survivors are concerned it is becoming a part of a system that they see as a tool of oppression. “Peer support is under attack,” and certification “would be a death knell,” David Callahan, a longtime member of Another Way, a peer-run dropin center in Montpelier, told Counterpoint. The executive director of Another Way, Elaine Toohey, said she has her reservations about limitations that are placed on peer support workers who are functioning within a system that is “just by its nature, coercive,” but believes that having peer support within the state’s
community mental health centers is “absolutely moving in the right direction.” For Malaika Puffer, who is employed in peer support at the Windham and Windsor Counties agency – Health Care and Rehabilitation Services – agencies like hers have a “genuine buy-in” to the meaning of peer support. She said that peer support is largely available only to people who are looking outside the system for support, while she and her co-workers are bringing people who are already in the system into contact with those choices when they would not have that access otherwise. Amy Wales, a Vermont Psychiatric Survivors staff person who is embedded as a peer support (Continued on page 4)
2 Peer Leadership and Advocacy
Meeting Dates and Membership Information for Boards, Committees and Conferences State Committees Peer Organizations VERMONT PSYCHIATRIC SURVIVORS BOARD
A membership organization providing peer support, outreach, advocacy and education. Must be able to attend meetings monthly. Experience with boards preferred, but not necessary. For information call 802-775-6834 or email firstname.lastname@example.org.
COUNTERPOINT EDITORIAL BOARD
The advisory board for the Vermont Psychiatric Survivors newspaper. Assists with policy and editing. Contact email@example.com.
—Currently Recruiting New Members—
ALYSSUM Peer crisis respite. To serve on board, contact Gloria at 802-767-6000 or firstname.lastname@example.org.
DISABILITY RIGHTS VERMONT PAIMI COUNCIL
Protection and advocacy for individuals with mental illness. Call 1-800-834-7890 x 101.
Hospital Advisory VERMONT PSYCHIATRIC CARE HOSPITAL
Advisory Steering Committee at the new hospital in Berlin, last Monday of month, 1:30 - 3:30 p.m.
Consumer Advisory Council, fourth Tuesdays, 12 - 1:30 p.m., contact Gwynn Yandow, Director of Patient Advocacy and Consumer Affairs at 802-258-6118 for meeting location.
Advises the Commissioner of Mental Health on the adult mental health system. The committee is the official body for review of and recommendations for redesignation of community mental health programs (designated agencies) and monitors other aspects of the system. Members are persons with lived mental health experience, family members, and professionals. Meets monthly on 2nd Monday at the Department of Mental Health, 280 State Drive NOB 2 North, Waterbury, noon-3 p.m. To apply for membership, contact Marla Simpson, M.A.(email@example.com) for further information.
LOCAL PROGRAM STANDING COMMITTEES
Advisory groups required for every community mental health center. Contact your local agency for information about meetings and membership.
Advocacy Organizations DISABILITY RIGHTS VERMONT
Advocacy in dealing with abuse, neglect or other rights violations by a hospital, care home or community mental health agency. 141 Main St, Suite 7, Montpelier VT 05602; 800-834-7890.
MENTAL HEALTH LAW PROJECT
Representation for rights when facing commitment to a psychiatric hospital. 802-241-3222.
VERMONT CENTER FOR INDEPENDENT LIVING
RUTLAND REGIONAL MEDICAL CENTER
Community Advisory Committee, fourth Mondays, noon, conference room A.
UNIVERSITY OF VERMONT MEDICAL CENTER
Program Quality Committee, third Tuesdays, 9-10 a.m., McClure bldg, Rm 601A.
Peer services and advocacy for persons with disabilities. 800-639-1522.
VERMONT FAMILY NETWORK
Support for families with child or youth with mental health challenges. 800-800-4005; 802-876-5315.
ADULT PROTECTIVE SERVICES
Reporting of abuse, neglect or exploitation of vulnerable adults, 800-564-1612; also to report violations at hospitals/nursing homes.
VERMONT CLIENT ASSISTANCE PROGRAM
NARPA ANNUAL RIGHTS CONFERENCE
The 2018 National Association for Rights Protection and Advocacy (NARPA) annual rights conference, is scheduled for Sept. 26-29 in Baltimore, MD. The theme is “Rights Still Under Siege!” Information is available at firstname.lastname@example.org or at 256-650-6311.
iNAPS 12th ANNUAL CONFERENCE
ADULT PROGRAM STANDING COMMITTEE
The International Association of Peer Supporters (iNAPS) 12th annual international peer support conference is scheduled for Dec. 3-5 in Orlando, FL. The theme is “Reinforcing our Roots: Designing Our Future.” Information is available at isps-us.org/index. php
Rights when dealing with service organizations such as Vocational Rehabilitation. Box 1367, Burlington VT 05402; 800-747-5022.
The Service Building, 128 Merchants Row Suite 606, Rutland, VT 05701 Phone: (802) 775-6834 email: counterpoint@ vermontpsychiatricsurvivors.org MISSION STATEMENT:
Counterpoint is a voice for news, commentary and the arts by psychiatric survivors, ex-patients, and consumers of mental health services, and our families and friends. Copyright 2018, All Rights Reserved FOUNDING EDITOR Robert Crosby Loomis (1943-1994) EDITORIAL BOARD Joanne Desany, Calvin Moen, Sara Neller, Eleanor Newton
The Editorial Board reviews editorial policy and all materials in each issue of Counterpoint. Review does not necessarily imply support or agreement with any positions or opinions.
PUBLISHER Vermont Psychiatric Survivors, Inc.
The publisher has supervisory authority over all aspects of Counterpoint editing and publishing.
EDITOR Anne B. Donahue
News articles without a byline were written by the editor.
Opinions expressed by columnists and writers reflect the opinion of their authors and should not be taken as the position of Counterpoint. Counterpoint is funded by the freedom-loving people of Vermont through their Department of Mental Health. DMH does not interfere with editorial content and its financial support does not imply support, agreement or endorsement of any of the positions or opinions in this newspaper. Counterpoint is published by Vermont Psychiatric Survivors three times a year, distributed free of charge throughout Vermont, and also available by mail subscription. Vermont Psychiatric Survivors is an independent, statewide mutual support and civil rights advocacy organization run by and for psychiatric survivors. The mission of Vermont Psychiatric Survivors is to provide advocacy and mutual support that seeks to end psychiatric coercion, oppression and discrimination. Counterpoint does not use pseudonyms in its reporting without stating that a pseudonym is being used and without an explanation for why the person’s identity is not being disclosed. Counterpoint does not use anonymous sources under any circumstances.
HEALTH CARE ADVOCATE
Have News To Share?
VERMONT FEDERATION OF FAMILIES FOR CHILDREN’S MENTAL HEALTH
Send it to Counterpoint! Your peer newspaper
To report problems with any health insurance or Medicaid/ Medicare issues in Vermont. 800-917-7787 or 802-241-1102.
Statewide support for families of children, youth or young adults in transition who are experiencing or at risk of experiencing emotional, behavioral or mental health challenges. 800-639-6071, 802-876-7021.
How to Reach the Department of Mental Health: mentalhealth.vermont.gov
The Service Building, 128 Merchants Row Suite 606, Rutland, VT 05701 Email: counterpoint@ vermontpsychiatricsurvivors.org
For DMH meetings go to web site and choose “more” at the bottom of the “Upcoming Events” column. ADDRESS: 280 State Drive NOB 2 North, Waterbury, VT 05671-2010
FALL (September delivery; submission deadline July 13) WINTER (December delivery; submission deadline October 9) SUMMER (June delivery; submission deadline April 9)
Don’t Miss Out on a Counterpoint! Mail delivery straight to your home — be the first to get it, never miss an issue. c Enclosed is $10 for 3 issues (1 year). c I can’t afford it right now, but please sign me up (VT only). c Please use this extra donation to help in your work. (Our thanks!) Checks or money orders should be made payable to “Vermont Psychiatric Survivors.” Send to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701
Access Counterpoint online at www.vermontpsychiatricsurvivors.org
_______________________________________________ NAME: _______________________________________________ ADDRESS: _______________________________________________ CITY • STATE • ZIP
FALL 2018 2018 SUMMER
ROUND UP In Commentary
In the News ECT in Springfield
Heat Death from Psych Drug
Guilty, Without Trial
The Department of Mental Health approved Springfield Hospital’s draft policies that include steps for seeking authority to perform electroconvulsive therapy involuntarily on a person who is competent to make decisions but has refused the treatment. DMH is now reconsidering. Article starts on page 1.
A man who died from heat stroke in July was on antipsychotic drugs that increased his risk, but the direct care staff at Kirby House in Waterbury had not been given information about those risk factors in order to guide his care plan, state investigators said. Article on page 8.
Counterpoint’s editorial bjects to a statement by Vermont’s prosecutors that people who have been charged with a crime, but never convicted because they were found incompetant, should be treated in the same way as convicted criminals. Editorial on page 18.
Hidden Forces Are Real
The annual Mad Pride march and rally was held in Montpelier, and a special two page section celebrates the event with a news report, a commentary about the experiences of an organizer, poetry by some of those attending and pictures from both the march and the rally. Coverage on pages 1, 16-17.
A contributer shares his experience with an unseen and unexplained force – which made him fear he would be deemed to have a mental illness – until he learned the true cause of his “harshest winter.” Commentary on page 19.
Possible Changes in ONH Law A committee with an assignment from the legislature to evaluate whether there should be changes in the laws on involuntary outpatient commitment – ONHs – has met twice. Committee members have not yet begun drafting any recommendations. Article on page 18.
Peer Respite Encouraged
Special News Focus: Changes in Peer Support Roles Is Peer Support at Risk? Some members of the survivor community fear that as peer support becomes more professional, it will cease to exist as orginally intended. Others say that having peer support staff in community agencies makes it more accessible to all who can benefit from it. Article starts on page 1.
Hospital Takes On Peer Staff Rutland Regional Medical Center is breaking new ground in Vermont by creating peer specialist positions on its inpatient unit. The two new staff members share their perspectives on the new roles. Article starts on page 6.
Feds Reject ER Supports After an 11-year-old darted out of an emergency room, surveyors for the Center for Medicare and Medicaid Services told Northeastern Vermont Regional Hospital in St. Johnsbury that it violated federal rules to have non-hospital staff – in this case, peer supporters from Northeast Kingdom Human Services – as observers for high risk psychiatric patients. Article on page 7.
Special Commentary Focus: The Alternatives Conference
Both those who responded to the summer Counterpoint reader poll, and the conclusions of Movement Unity Questioned A discussion group at the annual Alternatives a new study, support the use of peer respite as a means to reduce the need for inpatient psychiat- conference debates whether the psychiatric survivor movement is breaking away from its roots ric beds. Article on page 9. fighting oppression. Article on page 20.
New Psych Inpatient Beds
The University of Vermont Health Network Editorial Cartoon A commentary about how some in attendance says it is inviting a broad group of stakeholders to a meeting in September to begin a public in- were treated at a conference that was supposed put process on plans for a new psychiatric inpa- to be safe for mad people is expressed in an editient wing to be built on the campus of the Cen- torial cartoon on pages 20-21. tral Vermont Medical Center. Article on page 11.
Quechee Gorge Barrier Four deaths in seven months have added urgency to plans to build a temporary barrier on the bridge over the Quechee gorge. Article on page 11.
Service Animals An advocate for the rights of users of service animals is the focus of a new short video that is to be used to educate businesses about their responsibilities under the law. Melanie Jannery is featured with her service dog, Winston. Article on page 10.
Two Conferences in One
A Vermont Psychiatric Survivor staff member who attended Alternatives reflects on the meaning when a conference exposes perspectives that are so different, it is as if two conferences were being held in the same space at the same time. Commentary on page 23.
Oppression Via Benefits The way survival benefits become a form of psychiatric oppression is discussed in a commentary that is based on a presentation given by Vermont Psychiatric Survivors staff at the conference. Commentary on page 22.
Annual Meeting Open to All Members and Friends
Saturday, October 13 ~ 10 a.m. - 2 p.m.
Our Lady of the Holy Angels Community Room, Randolph, VT The meeting will feature a panel of psychiatric survivors speaking about how their lived experience has influenced their work, an address by the Executive Director, a business meeting, and remembrances of survivors or friends who have passed away in the last year. A luncheon will be served by the Another Way caterers.
Not a member? Contact us at email@example.com, or call 802-775-6834. Membership entitles you to vote in upcoming elections.
SUMMER FALL 2018
PEER SUPPORT AT RISK? • Continued from page 1 staff at Second Spring in Williamstown, said she finds herself “cringing at certain tasks which I am required to perform” for documentation of client activities, and the way it “immediately sets me apart from the person I am working with and changes the dynamic of our relationship.” Wales thinks certification may become more necessary in the effort to get funding for services but can lead to an “imbalance in the nature of the relationship which runs contrary to the whole philosophy of what it means to be a peer in the first place.” The START peer support model at the David Callahan Howard Center in Burlington faces barriers because only Medicaid provides reimbursement, according to staff member Matt Bousquet. It can thus only accept Medicaid or self-pay clients, although it does have a sliding fee scale based on income for those with Medicare, private insurance or no insurance. Callahan said he sees the money issue as a driving part of the problem regardless of whether peer staff are working for a peer-run or state-funded agency, because a peer relationship “changes once you have a job.” “A lot of them got bought out by grants,” he said of peer-run organizations. “People came out of the anti-psychiatry movement. They used to want to fight the system.”
A National Debate Some of the same conflicts were shared in workshops at the national Alternatives conference in Washington in early August. [See the expanded coverage of the conference in the sidebar article and commentaries, page 20-23.] The facilitator of one workshop, Patrick Hendry of Florida, said that while “we always talk about how the system co-opts us … the new paradigm is that peers are now co-opting the system.” Peer support workers are “the fulcrum for change in that environment,” and now professionals who themselves may have psychiatric diagnoses are using their own experiences as tools to support their clients, he said. Co-facilitator Kelly Davis echoed Puffer’s comments: “As we’re afraid of being co-opted, we have to remember that most people are still not able” to access peer support. Being paid “based on the value we add” to people’s recovery is important, she said. But there are road blocks to integration, Davis said, including a lack of understanding of what peer support specialist are by consumers, payers and other clinicians, and the lack of private insurance reimbursement. That contributes to the push for expanded certification requirements and private billing, which adds to the problem, said one workshop participant. “It forces [you] into the medical model. Ericka Reil You have to have a
diagnosis. You have to have a billing code. … Is it really peer support? Or is it just people with lived experience doing the same old thing?” The national conference discussions demonstrated a concern that Wales identified: that “the implementation of peer certification could also create a schism” within the peer workforce itself. “It leads to a stratification of peers or creates a kind of peer hierarchy.”
The Workforce Coalition Vermont’s peer workforce has a central clearinghouse for mutual support, the Wellness Workforce Coalition, administered by the Vermont Center for Independent Living and funded by the state. Ericka Reil, the outgoing director, said members of the coalition include a mix of those who work for peer-run organizations, community mental health agencies, recovery centers and NAMI-VT support groups – “everybody that does some kind of peer support.” She said she has a tough time with the certification issue because she believes there needs to be some sort of training in models such
“People came out of the antipsychiatry movement. They used to want to fight the system.” as Intentional Peer Support and Wellness Action Recovery Plans, but not formal certification. “Life is really your school,” Reil said, yet supporting others “can be triggering for yourself. … It’s all a part of self-care, a matter of knowing what you can handle.” She said formal certification could help in getting insurance reimbursement, “but at what cost?” citing demands of paperwork and reporting requirements. Reil said she thinks harm can result because agencies require that staff report suicidality and their staff come under the state’s abuse reporting law. She said peer workers tell her they have to report things when “they know it is going to be more of a crisis as a result” because they’ve lived with similar experiences. Many of them “sometimes feel a little segregated” because they often are not considered part of the clinical staff and “sometimes they’re treated as just another client,” Reil said. But Reil said she has found “surprisingly good feedback” when she works with executive directors of such agencies, who ask her how they can better support their peer workers. Some have said to her, “Please tell my peer workers to talk with me – I want to know.”
Within Agencies That’s the experience that Puffer describes in her relationship with leadership at HCRS. They’ve told her, “‘You tell us what peer support means.’ They’ve allowed us to build our own program,” she said. She also said she doesn’t feel being a part of the agency is a barrier to working for change in the system. “I think that it does happen a lot. Our role as change agents has been embraced as part of our role,” she said. HCRS administrators “ask for critical feedback and advocacy.” While there are “definitely inherent limitations to being in the system,” Puffer said, concerns about policies for reporting suicidal thoughts or
abuse can be addressed by “being upfront about the limitations” to make sure the person feels safe in the relationship. Bousquet said that he and his team members “struggle with the inequality within the system” in terms of how they are perceived by other Howard Center staff. He said he tries to avoid “getting caught in the web of always trying to prove your worth in the agency.” Getting more acceptance and being more integrated “is something to shoot for in the agency. … We don’t want to [be] separatist.” Bousquet said he also feels that being within the system, there is “definitely not as much freedom to explore with a person” in a mutual relationship. “You have to write a note. It’s going into the computer.” But he said there is a real value as well because he sees the broader scope of a person’s care plan within the agency, and the peer staff can advocate with case managers on behalf of clients. Another big plus: “We’re here. We’re in the Howard Center.” Bousquet said he opposes the idea of certification. “Why do we have to be approved to help somebody out?” Having his program restricted to Medicaid clients drives home to him that it may be inevitable in order to get reimbursement, he said. He can live with the idea, “as long as we’re still doing what we need to do to maintain relationships,” he said. “That’s where the line has to be drawn.” At Rutland Regional Medical Center, peer support staff in two newly created positions pointed to their ability to spend time listening to patients. Akbar Abidi said the value he brings as a peer specialist is that a person may be more comfortable talking with someone if they think, “Oh, this person can relate.” Abidi said he lets patients know that he isn’t interested in focusing on what brought them to the hospital or what their diagnosis is. “It’s whatever you want to talk about.” [See full Malaika Puffer interview with peer staff about the new roles at Rutland Regional on page 6.]
CMS Barriers The money issue struck home at Northeastern Regional Medical Center in St. Johnsbury this summer when the Center for Medicare and Medicaid Services – which provides oversight and controls all federal funding – found the hospital in violation of adequate staffing requirements because it uses peer support staff with emergency room patients waiting for admission. According to Paul Bengtson, the chief executive of the hospital and a board member at NEKHS, CMS found the hospital in violation because “you’re allowing non-certified, nonlicensed people who can’t document in the medical record.” “They are not saying that we cannot still call the peer support person,” Bengtson said, but the hospital must now hire additional staff to meet CMS standards because peer support cannot be counted as part of the staffing. The peer support (Continued on page 5)
NEWS . NEWS
FALL 2018 2018 SUMMER PEER SUPPORT AT RISK? • Continued from page 4 workers are employed by Northeast Kingdom Human Services, which has operated a program known as “the cadre” for many years, made up both of regular agency staff and peer support staff who are paid to be on call to provide support in various crises, including at the hospital.
Risks in the System
Spring, which is run by a combination of three designated agencies. She has concerns about the high use of medication there but is not permitted to endorse a non-medication alternative “as this would directly contradict the ‘wisdom’ of our clinicians. Instead, I try to be as empathetic as possible and suggest that they advocate for themselves when they talk to their psychiatrist.”
peer-run to Callahan, who does peer support work at Another Way. He still thinks back to the day, more than two decades ago, that the members of Another Way voted to hire a member to function as the director. He said he feels the decision to pay someone to be in charge changed the peer relationship with that person. “We lost a lot that day,” he said. “When you have a community that’s purely peer-run … they [have] a real stake in it.” Now Another Way “is not run by the people who go there,” he said. “It doesn’t really exist anymore” as the entity it was when its members voted on every decision as a grassroots community group. Despite his regrets, Callahan said that Another Way at least has the foundation of having been started by peers, while community mental health agencies “are just medical institutions [where] a doctor tells you what to do” and peer support staff “have to conform to the rules of the institution.” They are “doing the best they can, but I think they’re limited by the institution,” he said. Peer support itself is “becoming a profession and losing its credibility,” Callahan said. It is “very provider-ish” and “more about controlling people” than giving support. Callahan said that as soon as a person has a job description, they are no longer on an equal plane with their peers. That concern was echoed by a participant at Alternatives, who said that because such a person “has a Amy Wales real job and a real paycheck” the relationship can no longer be considered mutual. The very language of training and certification, Callahan said – “peer-support competent” – is part of what is going to “kill peer support.” “If they have a certificate and the person [they’re] trying to support doesn’t have a certificate,” it is no longer a relationship based on mutuality, Callahan said. He walked out of a recent training presentation that he said was “laying all these things down on paper on what to say and what not to say. … There was no language of love and caring.” “Becoming like a robot is not going to help people to interact on a level plane.”
Many peer support workers see bigger obstacles than funding when it comes to working within the system. Toohey said that peer support staff who work “I feel that it’s good to have within community agencies are “beholden to a bigger system” and people within that system a presence in hospitals or are being told, “This is the treatment for you.” in designated agencies.” She has been on both sides, having previously worked for a designated agency where “my behavior was based on being within that system” If a resident is experiencing an altered state and “not being able to make waves in the way I of consciousness, staff, including Wales, “are should have,” she said. instructed to employ ‘reality checks’ with the “I really view the work we do as a social person so as not to ‘feed in to their delusions’” justice issue,” she said, and that can’t happen instead of “opening up a wider conversation within a “big system that’s all about treatment that comes from a place of curiosity and nonmodalities.” judgement.” Toohey said that within peer-run agencies, She is required to enter notes using a model “you don’t have to be scared about sharing,” that “only takes into account the perspective of while at a designated agency a peer support the staff member … and infers that this is the worker has to be a “neutral non-entity within a truth for that particular resident.” relationship.” Despite her reservations, though, Wales sees She said she recognizes that even within a certification as a potential tool for improving peer-run agency, there is a difference between skills of communication, establishing boundaries herself as its executive director and the peers and caring for one’s own well-being. who are a part of the Another Way community, Peer-Run Options but “on a human level there is mutuality.” Peer support staff hold positions at several Toohey said that she sees reporting policies alternatives in Vermont that are fully peer-run. Besides Another Way, they include Alyssum, within agencies as having very negative a crisis diversion residence, and Vermont Psychiatric Survivors, the mutual support and consequences. “I’ve seen immense civil rights organization that also publishes harm by the ‘we’re Counterpoint. Others are a blend, such as the cadre program, keeping you safe’ which is led by peer support workers but is perspective,” she said. As someone who’s within Northeast Kingdom Human Services, and dealt with suicidality the peer-run respite beds within Washington since childhood, she County Mental Health Services. Safe Haven, a transitional residence in knows how much a Aimee Powers person already feels Randolph, began 20 years ago as a three-way out of control, and initiative among the Clara Martin Center, NAMIVermont and Vermont Psychiatric Survivors. taking more control away adds harm, she said. VPS hired the all-peer support staff, and Clara It is “extremely important to be able to talk about it,” but fear of being turned in leaves people Martin provided access to clinicians. Several years ago, during a leadership transition at VPS, “not being able to have anyone to turn to.” Aimee Powers, also from Another Way, said Safe Haven staffing was turned over to Clara she does not think there is a right or wrong Martin. The agency says it continues to have setting for peer services because “it all depends all staff at the residence be persons with lived experience. on the person interacting.” None of those models have validity as being “I feel that it’s good to have a presence in hospitals or in designated agencies,” she said. She said she is “wary of other agencies,” however, and “whether they really get the gist of it.” Those who come to Another Way are members of its community, not clients, she said. Powers said she felt very dehumanized when she was a client at a mental health agency. She said she doesn’t think of the people she supports as clients and was upset recently when she heard peer support staff working at an agency refer to having clients. “Either you are a professional clinician and you have your clients or you’re a peer and you’re supporting your peer. “That’s one of my fears, that these peer folks are going to be too clinical and too biased and not giving folks enough true support to make their own informed choice about what’s best for TWENTY YEARS AND COUNTING — Safe Haven in Randolph celebrated its 20th year this summer with a picnic attended by past and present guests, staff and families. The program is staffed by peers and run by the Clara Martin commuthem.” For Wales, that is the crux of the “medical nity mental health center. Above, a round of applause goes up during an awards presentation. (Counterpoint Photo: Anne Donahue) model” pressures she works under at Second
NEWS 6 NEWS
FALL 2018 SUMMER 2018
Hospital Takes Peers on as Staff RUTLAND – Implementing mutual peer support as a staff person at a traditional mental health provider was a key topic in an interview with two peer support workers acting in newly created positions at Rutland Regional Medical Center’s inpatient psychiatric unit. For Thelma Stoudt, the fact that she’s a hospital employee makes it appropriate to share her strong support for the use of medication with patients on the unit. “I’m a peer, but I’m not a peer who hates meds,” she said. She said she has seen drugs work, including for herself – and including for those who receive them involuntarily. Asked if some might suggest she isn’t functioning as a true peer supporter if she advocates a particular medical treatment model, she said that to the contrary, she feels more able to share her own experiences because of being part of a hospital. “It’s a [job] position in the hospital,” she said, where medication as part of treatment is the norm. As a result, “I can have these conversations [about the benefit of medication] and it’s OK.” Stoudt said she’s been in community peer group meetings where her views are in the minority. “All I can say is, it’s worked for me. That’s what I can speak to, from my personal experience” when sharing with patients, she said. Akbar Abidi takes a different perspective of how being a hospital employee informs his role as a peer specialist. “I don’t think that affects how I can function,” he said. “My priority is the patient.” He cited an example of a patient who wanted to be completely off all medication but whose doctors’ position was that they needed to be on meds. Abidi said he brought the patient’s concerns to the treatment team and was “able to come to a compromise to titrate [the drugs] to a much lower dose.” He saw himself as facilitating the conversation and “mediating a middle ground” on behalf of a peer. Abidi said he sees his primary role as a peer supporter is to be someone who can just listen, In addition, “I give my experience that there is hope, that there is wellness.” The hospital developed the positions and job descriptions based on research and input from an external consultant and extensive discussion with its Community Advisory Committee, according to Lesa Cathcart, director of nursing for the inpatient psychiatric unit. The planning process began two years ago. “It has been nothing but positive,” she said of the new positions. Other staff have “embraced them as part of the team,” and patients are very receptive. The hospital held focus groups with patients before starting the program, and they were “really excited about it,” she said.
Both Felt ‘It Fit’ as Job Stoudt and Abidi came to the new positions at the hospital from very different backgrounds. Stoudt, a resident of Vermont for 34 years, has been active in peer support roles for years, including as a peer facilitator for 10 years at Evergreen House in Middlebury through Counseling Services of Addison County. She also has been a facilitator for the NAMI Vermont Connections groups for many years, including heading up the first Connections group in the country to take place on an inpatient unit, at RRMC.
She learned about the position even before it was posted, through a NAMI colleague on the RRMC Community Advisory Committee. She reflected that it was her peers, not staff, that she had benefited the most from in her own history of hospitalizations. Stoudt said she thought, “It fits.”
“It’s a [job] position in the hospital,” she said, where medication as part of treatment is the norm. As a result, “I can have these conversations [about the benefit of medication] and it’s OK.” Abidi first came to Vermont only two years ago when he became a resident at Spring Lake Ranch in Cuttingsville while coping with addictions, bipolar illness and depression, he said. “I fell in love with Vermont,” he said. Spring Lake is a licensed therapeutic community residence with staff in the role of informal listeners who are simply there to support clients. He became an intern in such a position, he said. “People would come to me as a safe space” for initiating conversations, he said. It “planted a seed” for wanting to continue in work that could create that kind of informal access as someone who could just listen, he said. “If I didn’t have that experience in my own recovery” – access to a person who could just spend time talking – “things may not have gone the same way,” Abidi said. After deciding he wanted to take on a job that offered that to others, he applied to RRMC for a psychiatric tech position and the peer position “but thought that [the peer position] would be a better fit” and was glad to be offered it. In his role, Abidi said he lets patients know that he isn’t interested in focusing on what brought them to the hospital or what their diagnosis is. “It’s whatever you want to talk about.” The value he brings as a peer specialist is that a person may be more comfortable talking with someone if they think, “Oh, this person can relate,” he said. If the conversation reaches that depth, he will share more of his own history.
Finding Value in Roles Abidi and Stoudt each shared a memorable experience that made them feel their roles had value. For Abidi, it was a patient who has similar diagnoses to his own as well as a parallel to an abusive relationship he had experienced. He saw that “a lot of things would trigger [the patient],” he said, and he simply asked, “Want to talk?” He shared his experiences and told the patient that “it doesn’t mean it’s the end” – that “instead of the disease taking control of you,” a person can retake control of their life. “It opened [the patient’s] mind to treatment,” he said, and he was also able to make a referral to community support for people with a history of abuse. At discharge, the patient told him they were “extremely happy and grateful” that he was “able to listen and understand.”
Seeing the change for that patient made Abidi recognize, “I’m doing something important here.” Stoudt said she was able to help a patient “who was freaked out about ECT [electroconvulsive, or shock, therapy],” which had been recommended. The person was “scared to death,” but Stoudt was able to share her experience that “it worked for me,” though “yes, I had some memory loss.” When the patient left RRMC, it was with the plan of going to the University of Vermont Medical Center in Burlington for ECT, Stoudt said. She thought to herself, “Aha, that’s why I’m here.” Stoudt said the experience with a patient that made the biggest impact on her own “learning curve” as a peer specialist was around the importance of medications. The patient received court-ordered drugs after ending up in the hospital having discontinued prescribed pharmaceuticals, she said. “I’ve been in that position of stopping meds,” she said, noting that she had also been rehospitalized. After the patient’s condition improved, the patient described wanting to get the experience “tattooed on [their] wrist,” because they wanted to remember the benefits of medications and their value to staying well. “It was very revealing,” Stoudt said. “It helped me think about working with other people” on the high-security involuntary treatment unit at RRMC, and how she could help them reach that same realization.
NAMI Conflict Questioned Stoudt was asked whether her role with NAMI and the RRMC requirement that peer support staff take the NAMI Connections facilitator training might be seen as a conflict in being a neutral support person, since NAMI has an advocacy agenda that includes specific support for a medical model and the use of drugs as essential to treatment. “I never really looked at it that way,” she said, but instead saw her dual role as the longtime NAMI Connections facilitator on the unit as helpful. She said NAMI Vermont is not really connected to the national organization or its funding and said she believes the parent group relies less on pharmaceutical company funding than it used to. According to the most recent figures on its web site, in the last quarter of 2017 and first quarter of 2018, an average of 42 percent of the national NAMI corporate and foundation funding was from pharmaceutical companies in contrast to media reports in the early 2000s of up to 75 percent. Stoudt acknowledged that the Connections support program, training and materials were developed by the national organization. According to the NAMI Vermont website, the model requires facilitators to agree “to adhere to the NAMI Connection Support Group model,” which, according to the national web site, includes helping participants to “recognize that mental illnesses are medical illnesses that may have environmental triggers.”
A Focus on Accessibility The peer specialists work different shifts, including covering weekends, with the intention of creating maximum access for patients, Abidi and Stoudt said. They also sometimes provide (Continued on page 7)
NEWS . NEWS
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Feds Reject ‘Cadre’ as ER Staff ST. JOHNSBURY – Regulators found Northeastern Vermont Regional Hospital in violation of rules last spring for using peer support and other non-hospital support staff to monitor patients waiting for a psychiatric inpatient bed after an 11-year-old boy ran away from the emergency room. The regulators returned two months later and cited the hospital for new violations based on an incident in which a contracted sheriff’s officer chased a patient into the parking lot after the patient became upset during a mental health screening and ran out of the emergency room. The patient was “physically subdued … brought to the ground, and handcuffed by the sheriff,” then returned to the hospital in the handcuffs and transferred to four-point restraints and medicated, according to the licensing report. Hospital CEO Paul Bengtson is trying to push back against what he calls a “gap between regulatory requirements and what’s actually required to support people who arrive at emergency departments.” The surveyors representing the federal Centers for Medicare and Medicaid Services told him, “You’re supposed to keep the kid from running away.” On the other hand, if attempting to stop someone, “you can’t touch them,” Bengtson said. The cadre, a program of Northeast Kingdom Human Services that uses on-call peer support and agency staff to respond to crisis situations, is the kind of presence Bengtson wants in the ER, he said. “The more we can use people who know people from the area,” the better, he said, in trying to support patients who sometimes wait for days for a transfer to a hospital with an available bed in a psychiatric unit. However, CMS told the hospital, “You’re allowing non-certified, non-licensed people who can’t document in the medical record” when regulations require licensed hospital staff for
direct patient safety observation, he said. Peer support staff are still permitted, but only in addition to new hospital nursing positions, he said. “The solutions that are being required are very costly and, in my opinion, unnecessary,” Bengtson said. “We will have to spend hundreds of thousands of dollars for no added value.” The hospital submitted its annual budget to the Green Mountain Care Board with a line item for $245,000 in additional funds to meet the CMS requirements. The second inspection by CMS in June was a follow-up to check on compliance with a plan of correction after the runaway incident cited in April, and it was then that the surveyors learned about the takedown and handcuffing of the second patient who had attempted to leave. CMS has consistently barred the use of law enforcement personnel or handcuffs in patient care, citing both the Brattleboro Retreat and Brattleboro Memorial Hospital in the past for such violations. The report said that an insufficient staffing response at Northeastern Regional had resulted in “a failure to prevent non-hospital staff from placing hands-on [the patient] which consequently resulted in [the patient] being subjected to both physical restraint by a sheriff and having handcuffs applied, although [the patient] was not in custody of law enforcement, but remained a person in need of psychiatric services and hospitalization.” The patient was not on an emergency examination hold at that point, based on the report, since a psychiatric evaluation had been ordered but the screening interview had just begun when the patient became upset and walked out. The report said the patient described themselves to staff as being “aggressively suicidal” while leaving. In the earlier situation, the 11-year-old
darted out of the emergency room after being told he could not remain with a parent who was in the waiting room and while the one-toone observation was being provided by “nonhospital staff,” the CMS report said. The boy had been waiting for a transfer to the Brattleboro Retreat since the prior evening after making suicidal threats. A missing persons report was broadcast widely, including in news media; he was found more than a day later. Since then, the cadre, a decades-old program, has not been receiving calls for ER support, Rene Rose, a peer leader and trainer, said in July. “Nobody’s been called for months,” she said. Bengtson said at a meeting of the NEKHS program standing committee with Rose and others in July that communications needed to be cleared up because the cadre was still eligible to provide assistance. In mid-August, it still had not been reactivated, according to Rose. Bengtson has appealed to his county’s state senator, Jane Kitchell, for help in answering “how can we communicate with the regulators and say, ‘Here is a better way’” for delivering care, he said. Kitchel said the issue Bengtson raised in the meeting was new to her. Although well aware of the crisis that emergency departments are facing because of lack of resources for people arriving in a mental health crisis, she did not know about the role of regulatory pressures, she said. The failure to have adequate mental health resources in the state means “we’re increasing the risk that [small community hospitals] are going to be in violation” under CMS as they try to maintain patients, she said. Kitchel said she will be seeking to meet with the Secretary of the Agency of Human Services to discuss how to reduce inconsistencies between CMS requirements and standards of care set by the Department of Mental Health as “a good starting place” to address the dilemma.
HOSPITAL PEERS • Continued from page 6 support to patients waiting in the emergency department. “There are times that we’ll get a massive influx there” and the patients don’t know what’s going on in the process, Abidi said. When there is no pre-existing relationship, those patients often don’t want to engage, he said. However, he said, “I’m there to listen to them. … If someone is struggling, I’ll just listen.” Both of them had high praise for the hospital’s decision to create their positions, a move Abidi described as “being a leader, being the first in the state.” “I think that’s really important. I’m really appreciative,” he said. Stoudt agreed, saying, “I think it’s really brave of them to do it.”
such as Intentional Peer Support “is certainly something we can consider” in the future, she said.
Hospital Sees Benefits Cathcart said that the initiative began after the hospital had started working on the Six Core Strategies initiative – which recommends peer support roles – to reduce restraint and seclusion. They decided it was “something we really wanted to do.” There was no discussion of using a contract with an independent peer-run organization to provide the positions, she said, because it was not what other hospitals were doing in the models they reviewed. “We wanted them [the peer specialists] to be a part of us,” she added. When asked why NAMI’s facilitator training was chosen for the new staff, Cathcart said the hospital was already familiar with it because NAMI Vermont has offered a support group on the unit for several years. She said RRMC would be open to considering another training requirement. “Peer specialist certification is preferred,” Cathcart said. Such NEW PEER SPECIALISTS — Akbar Abidi (left) and Thelma Stoudt are serving in the peer specertification does not currently exist in Vermont. The advisory cialist positions that began this year at Rutland Regional Medical Center’s psychiatric unit. committee “talked extensively about it,” and the hospital decided to Rutland is the first hospital in the state to create peer support positions on its staff. (Counterpoint Photo: Anne Donahue) “use this as our starting point.” An alternative, skills-based program
NEWS 8 NEWS
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STATE OKs, THEN DELAYS, ON ECT • Continued from page 1 documents for patients. Currently, ECT is provided at the University of Vermont Medical Center, the Veteran’s Administration Hospital, Dartmouth Hitchcock in New Hampshire, and, on a limited basis, at Central Vermont Medical Center. Springfield Hospital told DMH in a November 2017 email described as an “update” that it had two patients scheduled to receive ECT treatments the following month. That plan fell through. In March, DMH did a site visit and reviewed the hospital’s ECT policy. The site visit report said that a review of the document “found it to be consistent with Department of Mental Health guidelines” and said the program anticipated serving its first patients “on or about April 6.” “The Department of Mental Health commends Springfield Hospital’s commitment to excellence in ECT therapy,” the March 27 report stated. For reasons that are not clear, the hospital delayed start of the program several more times. A June letter announced that ECT “is now available” and invited patient referrals. In an internal email on August 23, DMH staff reported that a hospital nursing director told them the hospital’s draft ECT policies were anticipated to be approved at its next Surgical Services meeting on October 6 and that its first patient was scheduled to receive ECT in October. Consent Policy Questioned The Springfield policy makes no reference to the mandated informed consent process and forms from the state, nor to the procedures required as part of the state criteria for performing ECT. It outlines the hospital’s own procedure for obtaining consent. The policy notes that patients with a legal guardian must have a court order for treatment. It then discusses patients “unable to give valid informed consent,” recommends consultation with the hospital’s ethics committee, and states, “Treatment may be given with informed consent to next of kin.” The policy proceeds to discuss “those rare cases where there is a competent refusal but ECT is still considered to be necessary due to a clear threat to the life of the patient” and recommends steps on how to pursue authority to deliver ECT against the person’s will. It states that for patients under the age of 18, consent of a parent or guardian is required for
use of ECT and that in such cases, “two staff psychiatrists should agree and document that ECT is indicated.” The American Psychiatric Association guidelines – which DMH said are the basis for the standards it monitors – indicate that consultants with expertise in child psychiatry should be used when considering ECT for a minor. Past DMH policies have required specific review and protocols for any program that might propose to use ECT for children. No Vermont hospitals have previously made such a proposal. Vermont law says that the state “recognizes the fundamental right of an adult to determine the extent of health care the individual will receive” and creates legal alternatives only for persons who are found to lack capacity to make a decision for themselves. Counterpoint questioned Bailey about the DMH approval of the Springfield policy, raising the concern that “in three very serious, substantive ways the policy violates state of Vermont established policy on ECT. In one of those, it directly violates state statute, and in another, likely violates constitutional rights.” The Counterpoint editor wrote in an email, “I would note that consent by next of kin has no authority in Vermont law; that overturning competent consent to mandate ECT has no authority under Vermont law even with court involvement; and that written DMH policy precludes the use of ECT on minors under age 18.” Follow-up from Counterpoint questioned Miller’s training and knowledge about ECT and whether, based on its communications and policies, Springfield Hospital actually intended to limit its program to serving patients who had finished ECT at another hospital first, as DMH said it was told. After the DMH site visit in March, email exchanges indicated that the only issue outstanding for DMH was verification that Springfield Hospital had reviewed Miller’s training and had authorized him to provide ECT there. On June 21, Miller sent an announcement to other physicians that ECT was “now available” in Springfield and that they could begin to refer or schedule patients. Internal email exchanges indicate that DMH
officials received Miller’s letter secondhand on July 2 and that it took them by surprise because they had not yet received the verification letter from the hospital. One email said staff was “actively following up now to see where communication broke down.” The DMH emails also indicate that neither Bailey nor Deputy Commissioner Mourning Fox were aware of any plans by Springfield Hospital to start providing ECT – despite DMH approval of the policies and the site visit in March – until the discovery of Miller’s announcement that the program had begun. “Well, this is news to me,” Bailey wrote. Fox said, “We will look uninformed, at best, if this came up and we did not know that we are adding a new site that can provide ECT.” DMH legal and program representatives told Counterpoint that the department believed that its statutory oversight did not include authority to approve or deny a hospital’s decision to provide ECT. As a result, they relied on Miller’s clinical expertise to determine whether there was a need to have an ECT provider established in Springfield, they said. Staff said their understanding was that the program would be limited to providing ECT to area residents who had started ECT at another hospital but wanted their ongoing treatment closer to home. They said they did not ask Miller how many individuals that included. Miller’s June announcement did not reference limiting ECT to follow-up care and said patients could include those receiving inpatient care at the Windham Center. In his November 2017 email, Miller told DMH, “As mentioned, we are only planning to offer maintenance [ECT] for now.” Maintenance ECT is defined by the American Psychiatric Association as prophylactic use of ECT that is provided at least six months after an initial series of ECT. Prophylactic is preventative treatment “to protect against recurrence” of an illness, the APA guidelines say. Disability Rights Vermont expressed concern as nformation about the new ECT service became public. Supervising attorney A.J. Ruben said DRVT will be “monitoring Springfield Hospital’s ECT program carefully to assure that in policy and practice patients and their families receive all relevant information and retain all their civil rights” when ECT is considered.
Heatstroke Death Tied to Lack of Drug Risk Warning WATERBURY – A longtime resident of Kirby House died of apparent heatstroke during July’s record-breaking heat wave, and state investigators determined that the direct care staff had not been given information about the specific risk factors created by the antipsychotic medication he was taking. The federal Substance Abuse and Mental Health Administration issued a bulletin in 2012 warning that antipsychotics, also known as neuroleptics or major tranquilizers, “can interfere with the body’s ability to regulate heat and an individual’s awareness that their body temperature is rising,” creating a “higher risk for heatstroke and heat-related illnesses.” The man who died was taking two antipsychotics, clozapine and risperidone. The date of his death – July 3 – coincided with a heat wave during the hottest July ever recorded in Vermont. The state does not identify individuals at health care facilities, but the Burlington Free Press reported his name as Steven Katz, 67. Kirby House is a licensed residential care
facility regulated by the state, and surveyors from the Department of Aging and Independent Living cited it for violating regulations requiring a written plan of care based on an individual’s identified needs. It was also cited for failing to maintain a safe environment after surveyors found room temperatures of 80 and 82 degrees, on the third and fourth floors of the residence, the report said. The 2012 federal bulletin advises, “For individuals who may be living in facilities, ensure that they are well hydrated, have access to cooler areas, and monitor temperature levels, especially for those individuals who may be taking antipsychotic and anticholinergic medications.” The investigation report said that other than noting the resident’s general refusal of nursing care, “The registered nurse provided no additional information to direct care staff about [his] specific risk factors of dehydration and heat stroke due to their prescribed
antipsychotic medications and advancing age.” Katz was known to have behavior that included “wearing excessive layers of clothing,” and staff “reportedly made ongoing attempts to encourage [the resident] to remove excessive layers of clothing,” but there were no interventions in the care plan to guide staff in these efforts, the report said. The facility was required to complete a plan of correction for the violations. The plan said Kirby House would provide staff training on common side effects and adverse reactions to commonly used psychiatric medications, update resident care plans and hold weekly management meetings to discuss clients who might be at higher risk and need closer monitoring. Katz was found unconscious in his bedroom by staff shortly after midnight, and he stopped breathing just as emergency responders were arriving, the report said. Cardiopulmonary resuscitation was not successful, and he died at the home. He had lived there since 1999, according to the report.
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Poll Vote and Outcome of New Study Both Support More Peers, Not Hospitals RUTLAND – A total of 54 people responded to the summer Counterpoint poll question, with overwhelming support for the creation of more peer-run community centers and respite beds over the addition of hospital beds to improve the state’s mental health system. The responses aligned with a research paper released in August which found that there were 2.9 fewer hospitalizations over the course of one year for crisis respite clients than for a control group in a study done in New York City. “The findings suggest that peer-staffed crisis respites can achieve system-level impacts,” the report in Psychiatric Services said. The Counterpoint poll was added to the Vermont Psychiatric Survivors Facebook page for the first time, and 46 people responded there. Only three of them voted for the addition of hospital beds. Fifteen percent of responses came in on the telephone poll line, and only one of the callers supported adding beds – and that person said that the peer programs should be added as well. The 54 responses, with 93 percent voting for the peer support options, were the most ever to a Counterpoint poll. The question read: “During the most recent legislative session, VPS advocated that instead of adding more hospital beds, the state invest in prevention and early intervention by developing in every Vermont county peer-run community centers that include two-bed, peer respites. “Which would you choose to improve Vermont’s mental health system? For more hospital beds, vote ‘Yes.’ For a network of peer-run community centers that include two-bed peer respites, vote ‘No.’” One caller who answered “no” commented, “I think that peer respite would be a huge improvement over the present system and it would be better than adding hospital beds.” A second caller went into detail. “Adding hospital beds in response to prolonged waits at emergency rooms puts resources into basically the back end of the problem rather than the front end,” the caller said. “If people had somewhere like a peer respite,
they wouldn’t need to go to the emergency room. In fact, most people I speak to would prefer to go somewhere like a peer respite instead of an emergency room.” The caller suggested that “the availability of peer respite probably would prevent even the level of crisis or situations that would involve an emergency room and so, much more cost effective in the long run and ultimately better for people, less traumatic.” The caller concluded by saying that there was “lots of evidence of the trauma involved in both ER and hospital stays” and that peer respite would be “ultimately more supportive of the person’s life, recovery, wellness, whatever it is that they’re looking for.” The outcomes of the study published in Psychiatric Services supported the advantages of peer respite in diversion from hospitals. It assessed whether peer-staffed crisis respite centers implemented in New York City in 2013 as an alternative to hospitalization reduced emergency department visits, hospitalizations, and Medicaid expenditures for individuals enrolled in Medicaid. It found that in the month of crisis respite use and the 11 subsequent months, Medicaid expenditures were on average $2,138 lower per Medicaid-enrolled month and there were 2.9 fewer hospitalizations for crisis respite clients than would have been expected otherwise. The study was based on claims data from 2009 to 2016. “Peer-staffed crisis respite services resulted in lowered rates of Medicaid-funded hospitalizations and health expenditures for participants compared with a comparison group,” the study concluded. (https://ps. psychiatryonline.org/doi/10.1176/appi.ps. 201700451) The new poll question in this issue of Counterpoint addresses the use of court orders for outpatient treatment, known as orders of nonhospitalization, or an ONH. This spring the legislature directed the Department of Mental Health to evaluate
the “strengths and weaknesses” of ONHs, including reviewing studies about “whether or not outpatient commitment and involuntary treatment orders improve patient outcomes.” A news report of the work group meeting discussions on that issue this summer appears on page 8. The new poll question asks, “Are involuntary outpatient commitments (called ONHs) of value to psychiatric survivors?”
The summer Counterpoint poll question was: During the most recent legislative session, VPS advocated that instead of adding more hospital beds, the State invest in prevention and early intervention by developing peer-run community centers that include twobed, peer respites in every Vermont county. Which would you choose to improve Vermont’s mental health system? Yes = More Hospital Beds No = Peer Centers and Respite Beds, Not Hospital Beds 7 % “Yes” More Hospital Beds
93% “No” Peer Centers and Respite Beds, Not Hospital Beds
Counterpoint Telephone Poll QUESTION:
Are involuntary outpatient commitments (called ONHs) of value to psychiatric survivors?
VOTE by calling:
888-507-0721 (Toll-free call)
>> To vote “YES” Dial Extension 12 >> To Vote “NO” Dial Extension 13 Results of the poll will be published in the next issue of Counterpoint.
COMMENTARY 10 NEWS
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Melanie Jannery and Winston stroll down Church Street in Burlington in this screen shot from a public service announcement video about service animals.
Service Animal Video Features Local Advocate
BURLINGTON – After more than 12 years of advocating in public on the laws of service animals and public accommodations, Melanie Jannery knows how to speak up for herself. It’s “the people that come after me” who may not have that voice, and they are the ones that she now has her focus on, most recently through a public service announcement that features her and her service dog, Winston. When she volunteered for the role with the Vermont Human Rights Commission, “they said it would be good to have a person with an invisible disability,” Jannery said, because people are accustomed to animals such as seeing-eye dogs but less familiar with service animals for other disabilities. The 3 ½ minute video is intended to accompany employer training and for posting on web sites to educate the public. “It was important to me because there’s been a lot of confusion,” she said. When a person experiences discrimination, “it’s another layer of anxiety” when anticipating a challenge again if returning to the same place, Jannery said. The video clip explains that requirements under public accommodations law are specific to dogs and miniature horses individually trained to do work or perform tasks directly related to the owner’s disability. One of the examples
given is calming an anxiety attack. The video teaches business owners that they are permitted to ask only two questions of a person: “Is the animal required because of a disability?” and “What work or task has the animal been trained to perform?” Certification or identification is not required. It also notes that Vermont law includes animals-in-training as service animals. A voiceover explains the requirements of the law while the camera follows Jannery around in downtown Burlington. The filming didn’t take long. “We spent a couple of hours one afternoon walking around,” Jannery said, starting at Barnes and Noble, heading down Church Street, and ending up on the waterfront. The public service announcement was filmed by Liam Kinney, who is just out of high school where he was very involved in media work. “I learned a lot,” he said, including how to talk to people with service animals respectfully, and what laws apply. “Melanie and Winston were great,” he added. Jannery has shared the video with people in other states, where the laws are sometimes less inclusive than Vermont’s. She thinks that laws need to copy Vermont in covering support
animals in training. She has a second dog herself, Jacob, who is training. She finds many stores that have signs that say, “Trained service animals only” – a message that isn’t in compliance – in contrast to a sign that simply says, “Service animals welcome,” without specifying that they can include those in training. Jannery and others have provided education when they see such signs and have had success in having stores change them, she said. “If there [were] other people in the world standing up” when they see discrimination occurring, perhaps with a person who is being intimidated, “it would really help,” she said, but she has rarely seen that happen. Meanwhile, Jannery continues with her personal advocacy everywhere she goes. On a recent weekend in New York, she encountered less-than-welcoming staff at an event venue. Instead of leaving, she continued her stay there, and staff were able to see how her two dogs acted in a public space. By the end, the manager told her, “I want you to feel welcome to come back any time.” “Now she’s going to have a different feeling” when other such situations come up, Jannery said. For her, that’s what advocacy is all about.
(WARM) network of groups are confidential support groups for people interested in tapering and recovering from the effects of prescribed medications,” the network listing said. “While we recognize that drugs have their place, our focus here is on the awareness of risks, on reducing dosages, and on utilizing various alternatives. “Some of us are still on medication, while others are tapering, or have finished tapering. … The only requirement for participation is a desire to learn about the effects of prescribed medications and how to safely manage withdrawal.” More information is available at warmnetwork. net.
its “dedication to social justice, diversity and inclusivity” thanks to receiving the most online votes out of other Vermont nonprofits in the running.
News Briefs ‘Coffee and Psychosis' Podcast A new British podcast is “an exploration of where the human mind can go,” according to The Key Update, the monthly e-newsletter of the National Mental Health Consumers’ SelfHelp Clearinghouse. “‘Coffee and Psychosis’ is a collection of human stories around the subject of madness. What society neatly calls ‘mental health.’” The Key’s summary says. “The path is lit with curiosity for what lies behind the doors labelled: Schizophrenia, Psychosis, Bipolar, depression, anxiety – and so forth. This is an attempt to unearth a deeper humanity behind the sometimes saccharine view of ‘unwell-being.’ This has nothing to do with coffee.” The podcast can be heard at coffeeandpsychosis.com/howto-listen. For access to the full Key Update, go to www. mhselfhelp.org/the-key-update-latest.
Support for Drug Tapering
A network of support groups is available for people hoping to taper and recover from the effects of drugs, according to The Key Update. “The Withdrawal and Recovery Meeting
Red Sox Honor VCIL
MONTPELIER – The Vermont Center for Independent Living was honored at a Red Sox home game in Boston in July with a $10,000 first place IMPACT award. The check was presented by the Red Sox Foundation on the baseball diamond at Wrigley Field to Executive Director Sarah Launderville. According to its press release, VCIL won for
Obituaries Barbara B. Hoffman
CUTTINGSVILLE – Barbara B. Hoffman, 73, of Cuttingsville, VT, a longtime peer and mental health advocate, died July 31, 2018, at her home. She was born July 30, 1945, in Windham, Maine, the daughter of Howard and Jean (Sanderson) Boardman. She graduated from Bank Street School for Education in New York City with a master’s degree in education and worked for over 20 years as a resident coordinator at Spring Lake Ranch. An advocate for social and migrant justice issues, she was also interested in Progressive Party politics, taught folk dancing and sang in Trillium. She was a member of the Community Advisory Committee for the psychiatric inpatient program at Rutland Regional Medical Center.
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UVM Promises Input on New Beds BERLIN – The University of Vermont Health Network says it plans to assemble an array of interested parties, including those who use services, by September to get input for the new inpatient psychiatric unit being planned for the campus of Central Vermont Medical Center. In the meantime, it has reported to regulators that it is already analyzing data to make preliminary decisions by November on the size and type of facility, using a “measure of need” definition of “patients currently unable to promptly access inpatient psychiatric treatment when clinically appropriate.” Anna Noonan, the CVMC executive director and co-chair of the planning committee for the new unit, said in late August that a broad list of organizations and individuals was being completed with the goal of a first meeting by the third week of September. The list includes several psychiatric survivor and consumer representative groups, she said. “We’re going to want to make sure we have that voice and perspective,” Noonan said. The meetings will be open to the public, she said. The first meeting will review the data analysis the network has been using to identify capacity needs, to look with the stakeholder group “through their lenses” for “any misses” of information, she said. The hope is that members will be “willing to stay with us through the whole process” of developing the new program over the next several years, she said. While the network is focusing on estimating the need for new capacity based on patients who currently do not have access to inpatient beds – and often wait in emergency rooms for days – some stakeholders suggest that current delays may be driven by the lack of community
services, housing or other supports rather than a lack of hospital beds. Over the summer, 54 people responded to a Counterpoint survey, and 93 percent said they supported the creation of more peer-run community centers and respite beds over the addition of hospital beds. A newly released study indicated that such respite programs can significantly reduce hospital and emergency room use. (See article, page 9.) At a Green Mountain Care Board forum in July, one hospital executive said that a lack of sufficient psychiatric beds was “going to be a never-ending problem” if prevention services were not addressed.
“There’s nothing that delays a project more than an advocacy group that believes that they were ignored or didn’t have a seat at the table.” Department of Mental Health Commissioner Melissa Bailey said that “we can’t forget about the social fabric that supports people,” and that, beyond the focus on the crisis in emergency rooms, there needs to be attention to “prevent needing that level of care.” She added that there also had to be supports for people’s resiliency after a hospital discharge. The forum was held to inform the board about mental health issues, but no consumer or
survivor representatives were on the panel. In an earlier update to the board on the new facility planning, UVM Health Network CEO John Brumsted testified that “we need to very much avoid the belief that just adding inpatient capacity” is going to be a “fix-all.” However, he told the board that once the emergency room logjam was relieved through inpatient access, other issues could be addressed. He said that data analysis was being done to review numbers from inpatient units and hospitals around the state, and that he believes “this methodology that we all agree to up front” will result in a solid number to determine the number of beds needed. Brumsted said that there would be active engagement with patients and advocates, but “we just want to get our act together a little bit first” before bringing others to the discussion. The hospital network was mandated by the legislature to ensure that “the planning process for designing its proposed expansion of inpatient psychiatric bed capacity … includes broad stakeholder input, including from patients and providers.” Retired advocate Ken Libertoff reminded Brumsted of the controversy that erupted in 2002, when the hospital attempted to move its psychiatric unit off the main campus in Burlington without getting key input, and ended up with months of public debate and, ultimately, rejection of the plan. The board chair, Kevin Mullin, said Libertoff’s advice was worth remembering. “There’s nothing that delays a project more than an advocacy group that believes that they were ignored or didn’t have a seat at the table,” he noted to Brumsted.
New Suicide Deaths Lead to Barrier Fencing at Gorge HARTFORD – Four deaths in seven months lent new urgency to creating a barrier to deter people from jumping from the Quechee Gorge bridge, state authorities say, and a temporary chain link fence is expected be installed there this fall. JB McCarthy, the project manager, said in late August that a bid had been awarded and materials were expected to be ready for the project in mid-September. The decision to install a temporary fence before developing a long-term safety plan came in January after the first of four deaths by suicide this year, according to McCarthy. The need for immediate action was then heightened by additional deaths at the gorge in February, May and July. The gorge has been the site of 14 deaths by suicide since 2007, according to Hartford Police Chief Phil Kasten. Even after the fourth death this year, in July, there was some debate at a public information meeting a week later about whether the temporary safety project was moving forward too quickly without considering more attractive types of fencing. McCarthy presented pictures of the 9-foothigh, chain-link-style fence at the meeting. It would be curved at the top. To provide a view of the gorge below, slots 2 feet wide and 5 inches high would be cut in the fence. One business owner said the gorge is the “highest visited natural attraction in the state” and that even though it is a temporary solution,
“it’s permanent” to tourists who have a one-time experience of the view. Senator Alison Clarkson (D-Windsor) said more attractive solutions should be reviewed because “we have to live with it for four years” since the full renovation of the bridge is scheduled for 2021. “We want safety ASAP,” she said, “but this is also a very important site” for the business economy. That generated animated comments from others at the hearing. Several had identified themselves as family members of people who had died at the Quechee Gorge bridge, including the parents of Hartland resident Derek Cooper, who died by suicide at the gorge in July 2011 at age 21. They led the advocacy in the state legislature for the need for a response. Another identified himself as a best friend of “the person who went off in January.” A young man said, “My father jumped in 1999.” Alan Johnson, a Hartford Selectboard member speaking as a private citizen, said, “With all due respect to the aesthetics of the site, we have to keep our priorities in mind.” He asked about the effect on a tourist who witnesses a death during “that one-time experience.” McCarthy said that developing alternative proposals would add at least two or three weeks to the timeline, with completion in October instead of the target deadline of September. The specifications for the current option were already complete and ready to go, he said. “Get it up,” urged Derek Cooper’s father. “This
is it. It’s ugly. I don’t care. Four people died this year, so far. This is what they can do right now.” To those who said that there were other ways that individuals could still jump into the gorge, David Cooper said, “There are 75 ways you can jump off that bridge. I don’t want it to be easy.” “If my son had that extra minute, he might still be with us,” he said. Kasten said it is important to make it difficult to give more time for a person to reconsider an impulsive decision and for others, such as onlookers, to intervene. Johnson praised the state for its “public health, empathy” response and its sense of urgency. As the meeting neared its end, he told the group he saw two options for feedback to V-Trans: “Either go with the presented option … or delay,” he said. “I have not heard anything that justifies a delay. If anyone thinks otherwise, raise your hand.” No hands went up. Legislation passed in 2016 required officials to implement suicide-prevention measures and improve pedestrian and first responder safety in response to the number of deaths. In January 2017, state workers installed two kiosks with a call button that rings a 24/7 counseling service offered by Lebanon-based Headrest and also installed signs that read “YOU MATTER” with a crisis number to call. A longer-term solution with a climbing barrier or safety net has been scheduled as part of a complete bridge rehabilitation project due in 2021.
To Cut Me
Cross Over the Waters
We walk down the path —
To cut is what I need. This is part of why … I cut me …
From Julia’s new house to the lake — Four women who don’t belong here, Born somewhere else, of foreign parents, Pioneers who settled here Or stayed behind in Old Europe, Knitting the patterns of their destinies Without us. Julia and I still keep our accents Sounding like two exotic birds Among the common population of crows and blue jays. The two women walking behind us Came to America too young To remember their heritage — But I can see the splitting shadow in their eyes Hidden under their mascaraed eyelashes. The lake is still, Bluish at the shore More gray/green in the distance, Cutting the tranquil Vermont sky. If I didn’t read history books I could not have imagined That battles were fought here The soldiers and their ships sinking down Water blessing their graves. Julia tosses pebbles in the lake In her mind she travels back in time — A child in Wales collecting seashells. The two young women talk about their studies — I am silent, watching the clouds moving Like swans over the lake. Thirty years have gone by Since I first touched American shores; When the snow melts next spring I will travel the sky Back to my original homeland. Julia talks about her work as a park manager; When winter comes, she will pack her car And head to Joshua Tree Park in California Then return the following summer To her home by the lake. She will keep traveling, Never returning to Wales — Her homeland only one photo album Where she keeps her childhood memories.
To cut away the good. To cut away the bad. To cut away the pain. To cut away the memories. To cut away the emotion. To cut so as to feel. To cut to stop the madness. To cut to stop the cycle. To cut away this world of hell. To cut away numbness. To cut away me. To cut is what I seek.
by Bonnie L. Barrows Bristol
Back at Julia’s house We drink herbal tea And eat English strawberry sponge cake Her daughter baked from Grandma’s recipe. The three women knit scarves — I — never able to tolerate needles — Spread fortune-telling cards I got a few years ago in London Over the rug. Julia talks about storytelling class Where we first met, the book about nature parks She’s been writing. The cards I read for her Show trips and good fortune — Except a cross card Bearing some sad news. The cross of our Catholic faith Always comes back to haunt us And crucified man Never ceases to suffer. Even now, as I am looking out of the window To the eternal beauty of nature, I can see the rays of the setting sun Knitting a cross over the water; For the drowned soldiers, For our ancestors Tossing pebbles to us From the other shore ...
by Vesna Dye Burlington
Deep Inside Deep inside the universe Lies a tear drop Deep inside that Tear drop there I am So as rivers overflow And seas run dry There I be Still alive Paths that entwine In a forest far away Lies a love that was lost In a past daze Draped in loneliness Yet naked in fear My soul will swindle Year by year The moon holds my secrets My hopes rest on the sun In a box high on a shelf lies my sanity So that I may never come undone In a sacred pact forever with him For making me be, I am never to sin Although not together Divided not ever Maybe through a wormhole I will find you and me In a parallel life Where anything may be.
by Cheryl George Rutland
The Arts . 13
SUMMER FALL 20182018
Evening of the Arts Puts Talents on Show
by Debbie Lyons
by Carolyn Wendel
Annual Westview House event in Burlington features both performances and artistic displays.
by Melissa Moran
by Kara Greenblott
by Tom Dunn
by Travis Nutting by Chris Bousquet
by Robert Cabrera
by Stephen Tall
SUMMER FALL 2018
Their World Is The Real One, They Say ’ve got this mind that could always be defective. But friends and lovers and landlords say I’m just overanxious. They think I’m being modest. Mental illness is out of sight for them, out of mind. And I’ve got a defective tongue for truth-telling. Yet friends, lovers and landlords say my face
is like the map of a land called Honesty. And they tell me it’s all one big misunderstanding. They can’t stop saying all is forgiven. And there is also a defective heart. Inside my chest. Or wherever — I think it goes from place to place. But my ears have been checked and checked. And still,
Deep Dark Hole of Despair
voices reach me from — well, I don’t know where. They comfort and counsel me. My present world, they consistently advise, isn’t real. Their world is the real one, they say. Sincerity and faith rewarded is the breath they breathe. And breath is my inevitable destination.
By Dennis Rivard
White River Junction
My Rock She’s set; So firmly her mind is set in stone.
I got nothing left to give. I have nothing left to take. I’m an empty shell full of regrets. Full of sorrow. I hope every day that things will be better tomorrow but tomorrow comes and tomorrow goes. And nothing gets better and I give up hope. I feel trapped and my life spinning out of control. I’m a puppet and everyone’s pulling my strings every which way as they tangle. I hang and dangle without a clue on what I can do. I know things will get better, I gotta get outta here, the deep dark hole of despair. Can’t get any worse than this. My heart is torn, my spirit is crushed. Deeper I go, darker it gets. What did I do to deserve this? No light in sight, as darkness surrounds me as life itself drowns me. Deeper and deeper I’m dragged into that hole. There goes what’s left of my soul. Burnt out from stress and hate, being labeled and harassed. Hopefully this will pass.
Anger, Change, Hurt and age are all the factors that keep us apart. I used to and still think of her as a rock.
by Tiffany Kangas
By Jennifer Rushlow
As She has been my Supportive Stone for many years. She gives freely her time, energy and sanity. Worn out – Tired – Exhausted: She yells and purses her lips together. My Rock, you are filled with anger, you are red hot to your core. I know and realize you have had a difficult life, that negativity surrounds you. Poisons you and your happiness. Where did we go wrong? How do you hold on to all of this built up, festered anger? How did I not catch this negativity sooner? I would have – I could have – I should have – NNNNOOOO! Today I Celebrate – When I needed you – you were the cement that held me up – The VERY foundation that kept me stable. I will take my happy memories and plant them. Water them – give them light and let their roots take hold of my heart. Then? My love will grow and I will eventually gain much knowledge and strength, kindness and influence – I will become a rock. Just in case my daughter will need her Supportive Stone ...
Share Your Art! Express Yourself in Drawing, Prose and Poetry... Counterpoint is About Peers Sharing With Peers Email to firstname.lastname@example.org or mail to Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 Please include name and town
SUMMER FALL 20182018
This is something that I’ve needed to talk about for years. In a few weeks I will turn 60 years of age. Honestly, I never believed I’d live past 25. I had such a deep hatred for myself. One great source of happiness and comfort is collecting teddy bears! I love pandas, but any will do. Old, new, raggedy, disabled. Often, when I take home a new one, I think about Renee. Renee and I met back in the late 90’s in a hospital day therapy group. She was a woman of short stature and she never really talked but when she did, she made sense. We became friends fast. After a short while, she invited me to her apartment. The moment that you entered her place, you knew what Renee’s true love was! Teddy bears! They were everywhere! Teddy bear salt and pepper shakers, placemats, pillows, books, you name it, she had it! The innocence of Renee and her home is partly what drew me to her. We never talked about our mental illness’ but it was obvious to me that her depression was severe. I had been a cutter since the age of 12. I had almost ended my life in ’82 and at that point, I discovered that I didn’t want to die. I just did not know how to live with the inner monsters inside. Sometimes after group, Renee would take me for a ride around the lake in her crisp-colored blue Toyota Celica Fastback! Boy, did we look good in that car! As our friendship got closer, I began to see a decline in her mental health. Her landlord decided to evict her from that safe apartment and she had to sell her Toyota. She even gave me her special teddy bear. It was around 3 a.m. after a nice day together that she
called me from the ER. She had cut herself and was hurt badly. I attempted to console her by giving her encouraging advice. I thought that my positive experiences could help her. Looking way back, I oversimplified her situation. I couldn’t fix her. I didn’t know how! One day I got the selfish idea to call and end our friendship on the answering machine! They were fairly new in use back then. An answer to any cowardly message that one might leave! Kind of like what a text would do today. In late September of ’96, our mutual friend, Lisa, called me in hysterics. Renee had committed suicide. She said no more, and I put down the phone. Every ounce of guilt that my body had stored came flooding in! If I only hadn’t left that message on her machine! If I had spoke to her in person? Maybe she’d be alive? I had a whole new set of reasons to hate myself. I also hated Renee for leaving. Now, as I think back, I alone couldn’t have saved her. I accept that I’ll always have some guilt over how I ended our friendship. I’ll probably always ask myself if mine wasn’t the last notch in the rope that hung Renee. I will ask until I am incapable of remembering her no more. With age, I realize that nothing is carved in stone! A lot of what appears to be true in life is not what it really is when you peel away the layers. The soft sense of comfort and innocence that I felt sharing life with Renee is a gift. I hope that her sweet soul did not linger on earth very long? Because she deserved nothing less than heaven. Who knows, maybe she’s cruising around a lake up there in her crisp blue Toyota Celica? Holding a teddy bear, of course.
By Jill Tuttle
Charlestown, New Hampshire
Louise Wahl Memorial Writing Contest Enter the 2019 Contest: Deadline March 15, 2019 Named for a former Vermont activist to encourage creative writing by psychiatric survivors, mental health consumers and peers. One entry per category (prose or poetry); 3,000 word preferred maximum. Repeat entrants limited to two First Place awards. Entries are judged by an independent panel.
Send submissions to:
Counterpoint The Service Building 128 Merchants Row, Suite 606 Rutland, VT 05701
or email to:
Include name and address.
2018 Winners - $260 in Total Prizes Awarded! Prose
First Place - $100 When Lightning Strikes Morgan Spur, South Burlington Second Place - $50 Preparatory Notes for an Existential Trial Josh Lyons, Boston, MA Third Place - $25 For Renee Jill Tuttle, Charlestown, NH
First Place - $50 - Natural Order Jodi Girouard, South Burlington Second Place - $25 - Addiction Ship Bonnie Lynch, Bennington Third Place - $10 - Broken and Lost Anna Bernier, Newport With the exception of “For Renee,” winners were published in the summer edition.
SUMMER FALL 2018 2018
Voices of the Mad Road Taken, Together
A Poem for Intentional Peer Support I lay alone, caged Frozen in endless night, pitch black. Nearby embers still and dark Long drained of all their gentle warmth. Pills dispensed each day Echoing like stones dropped in a well, Drawing strength from my body And clarity from my mind. Time passes, I wither My voice silenced My soul aches drowning in solitude. Then, a distant light appears, Begins to absorb darkness like dawn’s sun As a gentle breeze slowly rises. A familiar figure appears Unlocks the cage and enters Smiles and sits beside me. My heart opens, my voice found, Words begin to flow between us. Together we find the match, kindling and wood. Soon the soothing fire of humanity crackles brightly Melting the cage links Leaving only open vistas For us to enjoy As we venture forth Revitalized On the shared road to recovery The Mad Pride march brought out dozens of participants.
Dignity is a human state, whose borders undefended fall, To sore neglect and abuse of power, where you no longer qualify for quality in your nurses and your doctors, and some decency in decorum as the men in white coats wait for you down the hall, to demean and demise your so-called bad behavior in the name of mental health, harming you with tortures, pills, and ill treatment. That’s not help when you need some human intimacy, because you need a friend, when you need help not a little pill. Don’t pretend they hear a word you said, these helpers twist everything you say no matter how you say it, as they threaten you with tight restraints if you don’t cooperate by going into a small, cold, stinking, vandal proof, windowless, colorless cell,
by Daniel Towle
to be tortured and abused for being ill in the head, with no plants, clocks, chairs, pillows, belts, wallets, or phones. They smash your pride and treat you like dirt. Even to this day the atrocities continue … Why should I be punished and imprisoned for expecting someone to care? For sharing how I really feel, or seeing things that are not there? It should be a place of healing not a concentration camp …
by Gloria Alexander Montpelier
An assortment of signs gave voice to messages from psychiatric survivors.
Music, poetry, a guest speaker and a cookout followed the Mad Pride march.
SUMMER FALL 20182018
Mad Pride March and Rally Draws Dozens to Montpelier MONTPELIER – An on-and-off drizzling rain wasn’t enough to dampen the enthusiasm of some 50 psychiatric survivors who turned out for a march and rally in July to raise awareness of the Mad Pride movement. Chanting “1-2-3-4 open up the psych ward doors, 5-6-7-8 free mad people from the state,” they marched down Main and State streets and ended with a rally and cookout on the state house lawn. It was the third annual celebration of Mad Pride Day in Vermont. Attendance has grown each year. The guest speaker, Jacks McNamara, cofounder of the Icarus Project in New York City, told those gathered to “remember that sometimes to be a part of collective liberation you have to heal, but sometimes to heal you have to be part of collective liberation.” McNamara said it makes sense to be outraged by injustice” and recounted how the project began after they connected with another person who had lived through similar experiences and started a web site for people who wanted a forum for discussion. McNamara describes themselves as “a queer writer, artist, activist, and healer based in Santa Fe, co-author of Navigating the Space Between Brilliance and Madness, and subject of the documentary, Crooked Beauty.” They read several poems from their first book,
“Inbetweenland,” which was published in 2013. McNamara also praised those who had shared poetry earlier in the day, saying that it is about “naming what hasn’t been named – finding your own language” for what others won’t speak about. The Icarus Project is based in New York and describes itself as “a support network and education project by and for people who experience the world in ways that are often diagnosed as mental illness.” “We advance social justice by fostering mutual aid practices that reconnect healing and collective liberation. We transform ourselves through transforming the world around us,” its website reads. More about its work can be found at theicarusproject.net. Before hearing from McNamara, those at the rally shared music and personal experiences, many of them expressed through poetry. Matti Salminen, coordinator of the event, started the reflections by sharing from his own published poetry. Chris Hansen, the director of Intentional Peer Support, talked about her experience of hospitalization and how she came to recognize that “the people who did most for my sense of wellbeing” were the other patients on her unit – her peers – “not the ones who were paid to take care of me.”
Keynote speaker Jacks McNamara. She now works towards “the abolition of force” and the recognition that it violates human rights. That was a theme echoed by posters, chants, speakers and musicians at the rally, who asked for the chance to be free to be themselves.
Reflections on 3 Years of Building Mad Pride By Matti Salminen
SIGNS OF PRIDE — The annual celebration of Mad Pride Day in Vermont started with a march down Main and State Streets in Montpelier and ended with a rally on the steps of the capital. Matti Salminen (left) organized the event. (Counterpoint Photos by Anne Donahue)
y years of building my intention and purpose in psychiatric survivor advocacy began while I was still in a group home. With lots of reflection through writing essays and poetry, I prepared to face the world. Now, I’ve faced the world for six years as a psychiatric survivor trying to lead an independent life. This fills my spirit with strength. It fills my sometimes-sorrowful mind with the reason to see further into my own experience. Since I am a psychiatric survivor who believes in the power of conscious experience, I am also an advocate of mad pride. This past July 14, I marched with almost 50 other survivors and otherwise mad rights-conscious demonstrators in Montpelier. This was our third Vermont Mad Pride March in as many years. Our speakers have brought aspects of our culture and movement to the political landscape with words that evolve struggle into liberation. The actions of all the marchers have shown we have a community. We’ve shown our community is growing and that it is steadfast. Taking part in this demonstration has inspired me to re-create my mad identity. Sometimes it is difficult, and this difficulty indirectly allows the richness of my discontent to seep into my poetry. That’s life as a mad pride activist and poet and student to the richness of conscious experience. But this life is the best reflection of who I am ... in part that I’ve survived. My survival is the fruit which I yield to give full strength and vigor to my mad identity. I want to carry that identity and see a lot of great personal exploration into madness, as I venture forward. It has been a great experience to be able to organize a statewide event for mad pride. I want to thank all who attended the march. I want to thank those who believed in me enough to give me the responsibility to make a plan work. I will always look back to this experience and be happy that I did something that mattered. I take much pride in that. Matti Salminen is from Brattleboro and an organizer of the annual Mad Pride march and rally.
COMMENTARY PAGE 18 EDITORIAL
FALL 2018 SUMMER 2018
Guilty, Without Trial
We’ve always known that based on the charge of having a mental illness and being “a danger to self and others,” we can be locked up for as long as the psychiatrists say it is needed, based on a much lower standard of proof than someone who is found guilty of a crime. If it’s a crime, the proof of committing the crime must be “beyond a reasonable doubt.” For the charge of having a mental illness, it’s a “preponderance of the evidence,” which means not as much proof is needed. In addition, for a crime, there is a set amount of time for being locked up, and a set amount of time for being on probation or parole. For a mental illness, there is no limit to how long being locked in a hospital can be extended, and no limit to the number of times an ONH (order of nonhospitalization) can be continued. The Supreme Court has said this is OK because we are being “treated,” not punished. Local community mental health centers supervise an ONH, while the Department of Corrections supervises parolees. Now, Vermont’s county prosecutors want to change that, and give them a say in how long we stay hospitalized if any kind of a crime was charged. They want the Department of Corrections to supervise the ONH if a person was charged with a crime but found not competent to go on trial. And an ONH can be longer than probation would have been, but it can also be shorter, if the mental health agency believes a person is no longer a danger. The prosecutors want to have the law say that an ONH can last as long as probation for the crime that was alleged could have lasted – even if the person is well. They want crime victims to be able to testify about how they were harmed – even though there was never proof of the crime – in order to argue for a longer ONH. They want an ONH to be about “public safety,” not about treatment, so that a person can be locked up in a hospital again if the ONH is violated and prosecutor thinks they might be dangerous, even if there is no crime committed and even if there is no evidence of a continued mental illness. What is wrong about this? Just that under the United States constitution, a person is not allowed to be locked up unless they are either actually convicted of a crime, or they are found to be both mentally ill and a danger. In a memo written for the ONH study committee, the prosecutors used terms such as “people who engage in criminal conduct,” “these offenders’ criminal behavior,” and dangerousness “as evidenced by criminal behavior.” But no criminal actions by these people has ever been proven! The prosecutors are saying that “innocent until proven guilty” of a crime should be thrown out the window by the criminal court, if there is a finding that a person is not competent to stand trial or is acquitted by reason of insanity. People can have their liberty taken away under current law if being charged with being mentally ill, but they are not considered convicted criminals if there has never been a finding of having committed a crime. But our state’s prosecutors want to change that. They talk about people who are only charged with a crime as criminals. They want to have the same legal authority over them that they have for people who are convicted of crimes. They say that it is not fair that people with a mental illness who are charged with a crime are only allowed to be in the custody of the Department of Mental Health if they are shown to need treatment – the very thing the Supreme Court has said the constitution requires! There are elections coming up. Psychiatric survivors should be asking candidates for the position of State’s Attorney – our county prosecutors – these questions: Do you believe a person is not a criminal until they are convicted of a crime? Do you think a person who was never convicted of a crime should be supervised by the Department of Corrections just like a person convicted of a crime, simply because of a court finding that they are mentally ill and need treatment? The way to fight back against this outrageous prejudice is by voting against those who are promoting it.
Group Reviews ONH Laws WATERBURY – A study committee reviewing whether to recommend changes in Vermont’s involuntary outpatient commitment laws has met twice but not yet decided what to put in its report to the legislature. The committee is scheduled to have two more public meetings to review involuntary outpatient commitment orders – called an order of nonhospitalization, or ONH – before its report is due on November 1. Phoebe Sparrow Wagner of Brattleboro told other members that effects of the brutality of forced drugging, restraint and seclusion and the damage from the drugs ordered “can be disabling and permanent.” “I know; I have been there,” she said. Those are the outcomes to which an ONH “when taken to its logical extreme, can and must lead.” Wagner, who is on the committee in the role of an individual with lived experience of an ONH, concluded by saying, “This sort of coercion and cruelty masquerading as care doesn’t help anyone get better, it only chases them as far away from any ‘treatment’ as they can get.” Involuntary hospitalization as the consequence of what was called “noncompliance” with an ONH came up frequently in the discussion. Many participants expressed frustration with the perceived lack of effective enforcement for noncompliance. David Gartenstein of Windham County, the representative of the Department of State’s Attorneys and Sheriffs, urged that the criminal justice system be given a greater role in supervising people on an ONH and in determining how long they stay in the hospital if the orders arose based on a criminal charge. Gartenstein – referencing people charged with crimes, but not convicted – said it was frustrating that that the model “for someone who’s engaged in criminal conduct” but is found not competent to stand trial, “is treatment, not supervision” under current law. Data presented by the department indicated that in fiscal year 2017, of the 270 people placed on an ONH, more than 12 percent did not receive even one service from a community mental health agency. Some committee members said the numbers presumably showed the number of people who never showed up for a single appointment. Calvin Moen, the representative from Vermont Psychiatric Survivors, pointed out that the data might also raise the question of whether services were offered, rather than whether people accessed them. Moen presented a report to the committee on research that shows that “services that are provided on a voluntary basis have the best outcomes.” He said that the “first line of treatment” under an ONH is usually a plan for “long-term maintenance on drugs,” but the research shows this treatment results in worse long-term outcomes and less recovery. Mary Cox, the family member appointed to the committee by NAMI-VT, said that recovery-oriented enhanced voluntary services “tend to work best.” She pointed to a successful program in upstate New York where “they actually talk to the person and find out what they want.” Cox said that “building and maintaining an alliance” with a case manager is critical. Yet when the case manager is the “enforcer” for an ONH, that alliance is destroyed. When her son was on an ONH, it “worked for us” – as family members – but wasn’t “really treating him like a human being,” she said. When her son is receiving services voluntarily, he feels “everyone’s in his corner.” One part of the discussion focused on whether a judge could revoke an ONH and order a person hospitalized without meeting the separate legal standard for being “in need of hospitalization.” Matt Viens, an assistant attorney general with DMH, said that the law permits it but in practice judges require that a person meet the higher standard.
SUMMER FALL 20182018
COMMENTARY COMMENTARY. .
The Harshest Winter Do You Think My Story Is Unbelievable? You Have To Read It Through to the End by Eric Simendinger
s a native Vermonter, the cold winters weren’t something I feared. I loved playing in the sub-freezing temperatures as a child, dressed in multiple layers to keep the -20 winds out. I loved hiking up hills as snow found its way into my boots so I could slide down the hill on my sled so that snow would fly in my face. But this winter brought with it something new, something I had never experienced before, something that even my cold-hardened blood would tremble in encountering. Huddled in my apartment, not so far from the heart of Burlington, I heard tapping on my walls, on the floor, on the appliances, and … on me. My nerves in my shoulders twitched autonomously without any effort, and it felt like something had pressed its finger into me. Soon my nights were troubled, and falling asleep was difficult as my mind raced. Was this normal? My thoughts wouldn’t calm down. I tried to think, but as soon as the thought came, it jumped to another topic. It was hard to maintain focus and the nerve. This wasn’t normal, was it? And as my thoughts quickened and became troubled, my mind shot brilliant with blue light and my neck felt as if a needle had been shot straight through my neck! I struggled to breathe. What had just happened? I grasped my neck to check for any wounds. Something had shot through my neck. It still hurt, and I could still remember the needle piercing through my neck, but there weren’t any needles. Voodoo magic? Somewhere in the world, could there be someone with a mimic doll of me, sticking needles into my person? No, magic couldn’t be real. No, this definitely wasn’t normal. The water, the food, the air, the ground, it all felt sickening … I wanted to puke, to shave off my hair, to run, hide in a corner and die. My thoughts, my mind … it wasn’t mine anymore. I couldn’t control it. And everything – well not everything, but mostly everything – was sick. I needed nuts – peanuts, and lots of them. I couldn’t drink the tap water, I needed real water, cleaner water; the water was poisoned. I needed organic food; the food was poisoned. Should I stop the story? Perhaps it just sounds like a psychotic experience, nothing scientific to it. You know, I attended Clarkson University, graduated in mechanical engineering, was top of my class. I was never good at writing stories, but I was good at solving problems. Most people would just have given up at this point. I was scared about going to the hospital or calling police, mainly because I didn’t think they would believe me, they would think I was mentally ill, and they would think the burns on my body were self-inflicted and put me in a psych ward. I had no idea what it was, and it made me really paranoid. What happens if I get shot in the eye? What happens if I develop cancer? How much brain damage am I getting when I get shot in the head? Am I going to lose my tooth because the neuron got fried? It really scared me, so I looked for protection. I built a lot of shielding, but sheets of plywood and lead shielding were hardly effective because I had no idea where it was coming from. Every day I suited up in full gear, snow pants, scarf, three layers, two layers of gloves, hat, and hood, boots. I would travel to the waterfront, it was a safe place there and I would just play with rocks for hours and hours until eventually the coldness of night would force me back to my apartment. But eventually it became unbearable. I was so tired, so, so tired, in pain, and my legs were developing red spots all over them, a sign of cancer. I was absolutely dying. I could barely walk, breathing was hard, and I was exhausted beyond anything I had ever felt before. I literally had no energy, my brain hurt, legs hurt, stomach hurt, everything hurt. I became more and more paranoid. Was this some Black Project assassin hired to assassinate me? The walls continued tapping, and the joints of
Letters Music and Church Can Be Healing
To the Editor: Music therapy for an ailment of mental disease is a great way of curing a disease ... I personally do not understand the decision to not offer church, clerical services to people in need. MARTINO
the building. I moaned in pain. I hid in the shower every week, with the water on. The hot steam from the shower would fill the room with steam and absorb the radiation getting shot at me. It was powerful enough to go through the ground, through concrete, dirt. I needed more shielding. From science, I know water is one of the best shields against radiation. I filled some buckets with snow, thinking that certainly something would have been added to the tap water to allow gamma radiation to pass through it. Bucket after bucket of snow I placed in my apartment. I felt another radiation bullet pass by my face and then, in the snow, a line formed, a zig zag line, a radiation line – a pattern in the snow. Hiding behind my snow shield resulted in the radiation melting its trail into the snow. I quickly checked the path to see where my attacker was shooting me from. It went straight to the … powerline transformer? No one would believe me, and they would think my story was crazy. I needed a scientist, not a doctor.
I was scared about going to the hospital or calling police, mainly because I didn’t think they would believe me, they would think I was mentally ill, and... and put me in a psych ward. Four months later, I attended a conference at Generator in Burlington, with John Cohn, IBM fellow and chief scientist for IBM’s Watson Internet of Things Division. His talk – titled “Digital Disruption and the Internet of Things” – was about how he is developing automated farms, facial recognition, deep learning artificial intelligence, the world’s smallest computer, the trends for the future of wireless devices, and various other projects. It was a free event, open to the public, and I decided to attend to ask him if radio wave energy could be affecting animals, plants, and people in any way, that I was just collecting information on wireless electricity to learn as much as I can. I actually had no plan on asking him about what happened during the winter simply because I didn’t think anyone could explain it. But after the presentation, I was thinking to myself, this guy is really smart, like really smart. This type of phenomena is probably the stuff he dreams about. I brought the pictures with me. I waited as he talked to some 20 other people, and then I got to ask him: “Hey, something really weird happened over the winter. I was getting very powerful radiation in my apartment and I have these pictures which show it’s coming from the low-voltage transformers on the power lines. Do you know what’s going on?” Very nonchalantly, he said, “Oh, that’s stray voltage. It happens in the winter when the ground freezes. You see, the ground doesn’t want to take electricity, so voltage builds up in the power lines and if there’s a great enough voltage differential, you get stray voltage. “We get it on Vermont farms, in areas with lots of water in the ground or where it gets really cold. The cows, they get sick in the winter and stop producing milk and it was because the power lines were affecting them.” That’s why my walls were tapping, why I was getting “shot,” and why my nerves were twitching. It wasn’t some Black Project government sniper equipped with a gamma ray gun assigned to assassinate me. Wires that build up voltage seek out another low potential. Apparently, my body is a great ground. It took him not even a second to solve it, he just already knew what it was, and in moments he was off to talking with other members and packing up his tesla coil and equipment. But first he also showed me a cool tool called the HackRF One. He said you could analyze all the frequencies in the environment with it. And that was it. My story didn’t phase him one bit. He hardly skipped a beat, and he was on his way. I mega-dosed a DNA repair supplement called Cat’s Claw every day, ate as healthy as possible, and with good sleep, I slowly began recovering my energy. And I have moved out of Burlington. Eric Simendinger is from South Burlington. John Cohn’s June presentation can be seen on You Tube at www. youtube.com/watch?v=Qg5v70rWh9c
ALTERNATIVES 2018 CONFERENCE 20 COMMENTARY
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‘Are We One Movement?’ By ANNE DONAHUE Counterpoint WASHINGTON – Somewhere between the restored freedom of a conference built without government funding and the celebration of peer support models expanding across the mental health system, a tension emerged at Alternatives 2018. On the one hand, keynote addresses and workshops carried forward the social justice message against psychiatric oppression. Side-by-side were workshops that addressed strategies for the integration of multi-discipline peer support service teams within health care systems. The dichotomy blossomed into a broad discussion on the final evening of the conference, co-facilitated by an early leader of the psychiatric survivor movement, Dan Fisher, MD, and a newer voice, Karen Blass. The caucus discussion was titled with a question – “Are We One Movement?” – and Fisher said that he kept hearing the issue of the “splintering” of the movement throughout the weeklong conference. At the same time, a second caucus discussion focused on a similar topic: “Is Our Movement Still Ours?” which asked, “Do we still want change, or just seek to conform in exchange for jobs and funding?” Fisher said he had heard accusations of “co-opting and elitism” among conference participants. “Maybe that’s diminishing our voice,” he said. Fisher suggested that the “primary force has to be people who have suffered the greatest rights deprivation” through forced treatment and that the “peer movement has blurred it too much.” Blass pushed back, as did others. “It’s not so black and white,” she said. “You can get oppressed by other things.” She said she had seen “people hurting each other – the last thing I want to see,” through challenging who could validly call oneself a peer. “You can call it what you want,” she said, but “it is about being a human being; some of us have a harder time.” Sara*, from Vermont, suggested that anyone who says they are a peer should be considered a peer, using the model of AA, which says, “If you identify, you belong.” It is about “accepting each other’s reality” recognizing that “the whole problem is that the world won’t accept our reality.” Jennifer, from Toronto, said, “In every movement I’ve been a part of, you start off attacking the problem and you end up attacking your allies.” As members of a movement grow, said Patty, from New Hampshire, unless you “keep checking in” it “starts sinking of its own accord” because there are a variety of perspectives and “everyone is going to be somewhere on the curve for every issue.” Fisher agreed that “we haven’t revisited that in a number of years” and “nobody knows about the history of the movement.” For two first-time conference attendees, the idea of a movement against oppression was new. “I didn’t know the radical background” behind the Alternatives conference, said Doug, a peer from New Hampshire. Donald, from Nebraska, said he hadn’t recognized there was a connection between Alternatives and “the movement.” If the focus is placed on what is unifying rather than what is divisive, the unity comes because “if I’m struggling at three in the morning I can pick up the phone” and know there will be someone
there who understands and cares, Donald said. Three of the keynote speakers expressed views that may have been totally different, “but all valid from where they were coming from,” said Pat, from Minnesota, who said she felt people at the conference were inclusive and welcoming. “There’s room for all kinds of possibilities.” Melissa, from Pennsylvania, agreed that participants were “incredibly welcoming and unifying,” but said that many peers were not familiar with Alternatives or its history and have “clinicalized peer support.” Those people “are losing the roots” and actually “working against us,” she said. Funding pressures – “who gets the money” – is one cause, suggested Michelle, from Toronto. An outcome is “people being hired as peer specialists who have no idea about the big picture” but are being hired to meet needs of an agency. The first annual gatherings of the movement beginning in 1973 were titled “Conferences on Human Rights and Psychiatric Oppression” but were renamed for acceptability when government funding was obtained, Fisher said.
Alternatives 2018 was the first since 1985 to operate without government funding after years of controversy over allegations of censorship of conference content by the Substance Abuse and Mental Health Administration. Fisher identified the first and most fundamental split in the Mental Patient Liberation Front as occurring between use of the terms “psychiatric survivors” and “consumers” with the distinction being the degree of identification with oppression. Another participant said that while “there were always some rifts in the movement from the beginning, I never saw it as us being puppets of the provider community, which is what we’ve become.” Jim, from Connecticut, said he was currently involved in a Mad Freedom project to produce a documentary of the movement, which he said demonstrated the issues were really about power and the use of force. The peer movement is, however, a part of that, he said. Jim said the group could be unified through the effort at this (Continued on on page 21)
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ALTERNATIVES 2018 included ideas for tools for recovery and wellness. These photos were taken at the “Paint, Then Create” workshop.
Arts Offer Respite from Conference Stressors Alternatives 2018 included workshops addressing issues of self-care for peer support staff, such as the “Paint, Then Create” workshop where the photos of these paintings were taken. There was also an art drop-in room for people who needed space away or relief from triggering events – or just some relaxation. For one Vermonter who attended the conference, the art drop-in room turned out to be a safe harbor against the negative aspects she experienced. Phoebe Sparrow Wagner (formerly Pamela Spiro Wagner) of Brattleboro, an artist, poet and author, wrote this reflection: “During my stay, I was housed virtually alone
on the third floor of a large dormitory building “I ended up mostly manning the art dropat Catholic University [where the conference was in room. This, though not well-supplied, was held]. Indeed I sometimes felt that I was being surprisingly well-attended. I was glad to have punished for having requested a single room brought art supplies of my own to share. with private bath. … Sleepless most nights, due “I did do a lot of drawing, to keep my spirits to an over-air conditioned room, I scarcely at- up more than anything. Perhaps it was my own tended workshops but one, from which I left ear- loneliness and isolation that infused the scenes I ly because the movie shown was so triggering. I chose to draw, but sadness was the predominant was also unable to sit through any of the keynote feeling that people saw in my conference drawspeakers. ings.” “The dorm rooms were so spartan and uncomfortable as to resemble seclusion rooms. The ARE WE ONE? • Continued from page 20 similarity of the dorm rooms to seclusion rooms year’s Alternatives conference to create a priority list for advocacy. was echoed by many people. Fisher agreed that the months of advance work and at the pre-conference to identify priorities to bring to meetings with legislators on Capitol Hill showed “we can unify by action.” But those efforts “failed to spill forward into the conference itself” and that perhaps needed more effort next year, he said. The discussion circled back to the expansion of certified peer support specialists in health care. Some questioned training and certification aspects, while others embraced it. If someone is getting paid for peer support, that person “has a real job and a real paycheck” and is no longer an equal, with a relationship based on mutuality, said Susan, from Arizona. In an article in Mad in America, said Charlene, from Arizona, Darby Penney distinguished two types of peers: certified peer specialists, where the relationship is not mutual, versus mutual peers, where there is “no differentiation in power.” The ability to expand peer support through certification and funding is “a result of success” but “sometimes distorts the original,” Charlene said. Doug said the movement needs to ask itself, “What are we moving towards? Do we try to integrate in a way that [achieves change] rather than co-opts us?” That echoed some of the range of perspectives from workshops. In one, the authenticity of hired peer specialists was questioned, with the suggestion that the goal cannot be “just to fit into the system” because one “has to be able to stand outside the system independent of public dollars.” “We are putting the most oppressed people in the most oppressive system, and think they won’t be co-opted,” noted presenter Kelly Davis, in discussing the risks of becoming “miniclinicians, mini-employees.” In another workshop, change from within was celebrated as achieving the “beginning of a shift in the medical world to what we in the peer support world call person-centered care,” said presenter Robert Rousseau, a certified peer specialist and member of the state mental health administration in Boston. “We put the ‘care’ back in health care,” he said. “We’re specialists at ‘being with.’” *Discussion participants are identified by first names only because they were participating in an internal conference discussion and were not asked about sharing full identities.
22 ALTERNATIVES 2018 CONFERENCE
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Coercion in Survival Benefits
By CONOR CASH
t this year’s Alternatives conference in Washington, Calvin Moen, Kaz DeWolfe and I gave a presentation on the elements of psychiatric coercion that members of our community face in accessing survival benefits. This was an effort on our part to broaden the scope of discussions that occur in the consumer/survivor/ ex-patient movement to consider coercion more broadly. All the people who attended our workshop were recipients of survival benefits and had a great deal to contribute to the discussion. They spoke to the precarious nature of life on benefits, as well as to the degree to which participation in the benefits system limits their ability to determine the conditions of their care. Like any system of power, psychiatry employs not only sticks but carrots to condition behavior and enroll people in its networks. While I see a great deal of force and coercion in my work as a patient representative in hospitals in Vermont, I have also come to see the economic realities that people endure as another element of coercion, albeit a subtler one. This presentation was an effort to discuss these “soft” forms of coercion and to foster a discussion of the class dynamics at play in the mental health system. Our primary analysis was Supplemental Security Income and Social Security Disability Insurance, as well as Section 8 vouchers, as these are the predominant forms of assistance accessed in our communities. For those qualifying on the basis of a psychiatric diagnosis, accessing these benefits presents the most significant elements of coercion. To establish the broader framework, we presented a number of discourses that touch on mental health, as well as their economic context. News media portray for us a number of crises that seem to overlap: an opiate crisis, in which alarming numbers of people are dying of overdoses; a suicide epidemic, in which the rates at which people are choosing to end their own lives is steadily increasing; and a (societal) mental health crisis, in which greater numbers of people are being diagnosed with psychiatric disorders. These “crises” are often discussed as matters separate from the broader economic context. This is a grievous oversight that erases the material conditions that we live under and that psychiatrizes distress. We have come to see it as implicitly political. We are living in a time in which wealth
inequality is as profound as it was in the leadup to the Great Depression. Wages have been stagnant since 1973, and housing is costly and scarce. Many of us face our access to healthcare as increasingly precarious, cannot afford secondary education, and are experiencing the bleak and ruinous reality of climate change. With these factors in mind, pathologizing distress is an error in logic. We are not living in the best of all possible worlds, and the discussion of mental illness as a public health crisis tends to ignore the material underpinnings of our distress and fear. When looking at survival benefits like SSDI/ SSI, we can see economic distress reflected in applications for benefits. During the 2008 economic crisis, in which the housing economy was devalued, there was a corresponding spike in applications. While there is a perspective among conservatives that considers this rise in applications as evidence of cheating in the benefits system, we choose to interpret this data point in another way: The most significant social safety net is not provided by the government, but through informal mutual aid networks often composed of families and friends.
Like any system of power, psychiatry employs not only sticks but carrots. When the collapse of the housing market devalued home prices, it wiped out the savings of the working class and cut many people off from access to credit. It severely reduced the capacity of these informal networks to support members who are unable to work in the formal labor market. The rise in applications during this period does not indicate cheating in the benefits system, but actual need from people who were formerly able to access survival resources through other means. The emphasis on cheating in the disability benefits system mirrors the discussion that preceded the roll-back of welfare programs in the 1990s in which racist tropes about the black family, most notably the figure of the “welfare queen,” were deployed by conservatives and liberals alike to eliminate the Aid to Families with Dependent Children program. It was replaced with Temporary Assistance to Needy Families, which had work requirements for benefits recipients and a five-year lifetime limit. Before and during this period, important changes were being made to benefits for those with disabilities that loosened the terms under which people could receive benefits.
Have an Issue to Discuss with Other Survivors?
These changes made it easier for those with a psychiatric diagnosis to receive benefits and occurred during major waves of deinstitutionalization for the psychiatrically imprisoned. However, for those qualifying for benefits based on a psychiatric condition there is not only a requirement that one provide proof of disability in the form of medical records, but also a requirement that one perform the role of the “good patient,” leaving little room to explore alternative modalities or to attempt to live life without medication. This is the equivalence of the work requirement, as attached to the receipt of disability benefits. In this later stage of the neoliberal period, attacks on cash assistance of all sorts are frequent, and as other forms of public assistance have been successfully gutted the crosshairs have settled on SSI/SSDI. Here disability benefits are referred to as “the new welfare,” and recipients of these benefits are examined as potential cheats. For anyone familiar with the benefits system, there is an awareness that casting recipients in this light is not only misleading but cruel. The maximum cash benefits available for SSI/ SSDI put recipients well below the poverty line, and in the event that one’s eligibility is called into question benefits can be charged back for months or even years, a disastrous occurrence that not only cuts off income but throws one into debt. In our presentation, we tried not only to identify the deep problems with the benefits system for those with disabilities but also to brainstorm political demands that would allow for an expansion of access to survival resources without the current trend of psychiatrization. Participants in the workshop identified existing sets of demands currently on the political stage that would move us towards this objective. Among the demands identified were a universal basic income, which would move us towards the goal of divorcing wages from work; universal healthcare; a right to housing independent of one’s compliance with psychiatric care and substance abuse treatment; and the reinstatement of substance abuse disorders as qualifying conditions for disability benefits. It was inspiring, exciting and moving to participate in conversation with comrades who have lived under the benefits system and are seeking paths through it to greater freedom and security. Our liberation from psychiatry and our economic liberation are more firmly intertwined in my understanding after this exchange. Disabled workers of the world, unite!
Conor Cash is a peer advocate for Vermont Psychiatric Survivors in the Brattleboro office.
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ALTERNATIVES 2018 CONFERENCE .
Pen and inks created by Phoebe Sparrow Wagner of Brattleboro during the Alternatives conference in Washington. See article, page 21.
Alternatives — Plural By CALVIN MOEN
his was my second consecutive year attending the Alternatives conference. Like last year, I distinctly felt that there were (at least) two separate conferences happening concurrently. One of these conferences centers the experience and perspective of a user of mental health services who is in recovery from a mental illness and has joined the peer workforce to serve others who are experiencing what they have gone through. The other conference centers the experience and perspective of a survivor of psychiatric harm who works to resist and dismantle the coercive and forceful psychiatric system and to reinstate the human and civil rights of those who have been deemed mad. Most of the keynotes and workshops could be easily placed in one or the other of these conferences but not both. This split can be traced back to the conference’s origins. The Alternatives website contains a section on the conference’s history, from its first iteration as the Conference on Human Rights and Against Psychiatric Oppression – rooted in the mental patients’ liberation movement – to its NIMH sponsorship and rebirth as Alternatives, the conference for the peer recovery movement. In that regard, the history of Alternatives parallels our history as a movement from militant and civil rights-based to professional and recovery-oriented. The conference’s messaging this year has made much of its return to its roots without government funding. Since the Substance Abuse and Mental Health Services Administration defunded Alternatives, it has been forced to scale back, hosting the 2018 conference on a college campus and eliminating scholarships. Following more than a decade of complaints about SAMHSA censorship (see Counterpoint Fall 2017, “SAMHSA Censors Alternatives”), the conference boasts that it is once again the “people’s Alternatives.”
At this point, though, there seems to be a struggle over who constitutes the “people.” As with last year, the keynotes provided a powerful platform for dissenting voices. Sera Davidow of the Western Mass Recovery Learning Community called on proponents of “unity” to stop getting angry at folks for expressing divergent viewpoints and dissatisfaction with our movement. Former VPS Executive Director Wilda White, whose keynote talk was “Crazy Lives Matter Too: Imagining a World Where Everyone Is Valued,” critiqued the psych survivor movement for being too white-centric and challenged both mad pride activists and racial justice activists to center the most marginalized – black and brown people deemed “crazy” – in our movements. Every movement for social justice has faced a choice whether to throw its most marginalized members under the bus. Similarly, the onsumer/ survivor/ex-patient movement can choose to lift up the expressed needs of our entire community rather than insist that everyone agree on one agenda and one purpose. A recent blog post by Emily Cutler on Mad in America rejects unity for “polyphony” – the multitude of experiences and expressions of distress and difference. “There are countless ideas, philosophies, frameworks, and opinions about the causes, nature, and meaning of ‘madness,’ as well as how we should respond to it,” she writes. “It is therefore only natural that the critical psychiatry movement is not unified.” If there was a third conference happening that week, it was exemplified by the Mad Pride and Neurodiversity caucus held on the final evening of the conference. The program description claims that “both the Mad Pride and neurodiversity movements … support people’s rights to express their ‘madness’ in a manner free from threat of coercion.” I see in this movement, or movements, an expansive and fertile ground where polyphony is welcome and difference is an asset. Under an umbrella of cognitive liberty, mental health service users and prison abolitionists, disability rights activists and drug users – and anyone else whose thoughts and behaviors are policed by mainstream definitions of normalcy – have something to contribute. It’s no coincidence that there is so much overlap among mad pride, neurodiversity, and anarchism – namely, the rejection of hierarchy
and the practice of consensus. Consensus doesn’t mean unanimous agreement but rather that a group struggles together to find solutions that everyone can live with. Conferences overwhelm me with their swarms of people, ideas, and noises, so I spent my evenings wandering around the neighborhoods surrounding the campus. One night I found a little cocktail bar and sat for a few hours with the bartender and the one other patron, a Washington local who works for the Veterans Administration. They asked me what I was doing in town, and I asked about the work they did, and an entire discussion unfolded about socialism, human rights, alternatives to mainstream medicine, and the racism and classism driving gentrification. It was one of the most energizing conversations I had while in Washington, and it reminded me that there are allies and comrades around every corner, not just in spaces dedicated to movement work. Social justice theorists have long suggested that a shared identity is not the basis for a coalition but rather that a shared goal brings people together. Perhaps it is time for those of us invested in dismantling a coercive and oppressive psychiatric system to team up with others who are resisting paternalism and capitalism in the form of mass incarceration, lack of health care, homelessness, family separation and other
forms of state violence.
Alternatives may continue to be a crossroads where the peer-identified and survivor-identified briefly intersect but barely overlap. But I’d like more. I’m looking for that third option. I’d like to co-create spaces where the conversation is expanded rather than synthesized and simplified. I’d like all of us to take part in more conversations about restorative justice, fat acceptance, racial justice in schools, sex workers’ rights, climate science, and everything else we struggle for as humans living in a sometimes inhuman world. Because madness is intersectional, and it does not occur in a vacuum. And because we might find we have more in common than we thought. Calvin Moen is the training director for Vermont Psychiatric Survivors and does grassroots organizing for mutual support in Brattleboro.
24 Resources Directory SURVIVOR PEER SERVICES Vermont Psychiatric Survivors Peer Support Groups BRATTLEBORO: Changing Tides, Brattleboro Mem.
Hosp, 17 Belmont Ave., Brattleboro; every Wednesday, 7-8:30 p.m. Call John at 802-258-0782 BENNINGTON/UCS: United Counseling Service, 316 Dewey St., Bennington; Mondays and Wednesdays, noon-1 p.m. Call Barbara at 802-442-5491 NORTHWESTERN: St. Paul’s United Methodist Church, 11 Church Street, St. Albans; 1st and 3rd Tues, 4:306:30 p.m. Contact Jonathan at firstname.lastname@example.org RUTLAND: Wellness Group, VPS Office, 128 Merchants Row, Suite 606; every Wednesday, 5-7 p.m. Call Beth at 802-353-4365 SPRINGFIELD: First Congregational Church, 77 Main St., every Thursday from 2-3:30 p.m. Call Diana at 802-2891982
VPS is a membership organization providing peer support, outreach, advocacy and education 128 Merchants Row, Suite 606, Rutland, VT 05701 802-775-6834
www.vermontpsychiatricsurvivors.org Peer Support WARM LINES
VERMONT SUPPORT LINE (STATEWIDE):
833-888-2557; every day, 3 p.m.- 6 a.m. [833 - VT-TALKS]
PEER PLUS (STATEWIDE):
(802)595-0588; 7 days/wk, 6-9 p.m.
MUTUAL SUPPORT NETWORK THE HIVE: email@example.com www.hivemutualsupport.net 802-43-BUZZ-3 (802-432-8993)
Alyssum, 802-767-6000; www.alyssum.org; firstname.lastname@example.org
VERMONT PSYCHIATRIC SURVIVORS OUTREACH AND PATIENT REPRESENTATIVES 802-775-6834 F: (802) 775-6823 email@example.com
Soteria House, information and online application at www.pathwaysvermont.org/what-we-do/our-programs/soteria/ or call Pathways Vermont Intake Line, 888-492-8212, ext. 140
Peer Centers & Employment Support ANOTHER WAY, 125 Barre St, Montpelier, 802-229-
0920; firstname.lastname@example.org; www.anotherwayvt. org; see website for events calendar. PATHWAYS VERMONT COMMUNITY CENTER, 279 North Winooski Avenue, Burlington, 888-492-8218 ext 300; www.pathwaysvermont.org/what-we-do/our-programs/pvcc; www.facebook.com/PathwaysVTCommunityCenter
Vermont Recovery Centers WWW.VTRECOVERYNETWORK.ORG BARRE, Turning Point Center of Central Vermont, 489 N. Main St.; 479-7373; email@example.com
BENNINGTON, Turning Point Center, 465 Main St; 802442-9700; firstname.lastname@example.org BRATTLEBORO, Turning Point Center of Windham County, 39 Elm St.; 802-257-5600; email@example.com
BURLINGTON, Turning Point Center of Chittenden
County, 191 Bank St, 2nd floor; 802-861-3150; GaryD@ turningpointcentervt.org or www.turningpointcentervt.org
MIDDLEBURY, Turning Point Center of Addison County, 228 Maple St, Space 31B; 802-388-4249; tcacvt@ yahoo.com MORRISVILLE, North Central Vermont Recovery Center, 275 Brooklyn St., 802-851-8120; firstname.lastname@example.org
RUTLAND, Turning Point Center, 141 State St; 802-7736010 email@example.com
SPRINGFIELD, Turning Point Recovery Center of Springfield, 7 Morgan St., 802-885-4668; spfldturningpoint@ gmail.com
ST. ALBANS, Turning Point of Franklin County, 182 Lake St; 802-782-8454; firstname.lastname@example.org
NATIONAL SUICIDE PREVENTION LIFELINE 1-800-273-TALK (8255) 24/7 confidential support Vermont Federation of Families for Children’s Mental Health Statewide support for families of children, youth or young adults in transition who are experiencing or at risk to experience emotional, behavioral or mental health challenges. 800-639-6071, 802-876-7021
Women’s Holistic Outreach Learning Environment (W.H.O.L.E.) peer support groups in Springfield for “women who struggle with mental, emotional, and behavioral health issues.” Tuesdays from 7 to 8:30 p.m. at the Calvary Baptist Church, 156 Main St. Entrance at back on right side of building. More info at www.wholevpweb.com
Pride Center of Vermont
LGBTQ Individuals with Disabilities Social and Support Groups: Connections and support around coming out, socializing, employment challenges, safe sex, self-advocacy, and anything else! Burlington, Wednesdays, 4:30 p.m. at Pride Center, 255 S. Champlain St.
Brain Injury Association
Support Group locations on web: www.biavt.org; or email: email@example.com; Toll Free Line: 877-856-1772
DBT Peer Group
Peer-run skills group. Sundays, 4 p.m.; 1 Mineral St, Springfield (The Whitcomb Building). tinyurl.com/PeerDBTVT
Trans Crisis Hotline
The Trans Lifeline (dedicated to the trans population) can be reached at 1-877-565-8860.
A non-reporting support line (will not call police or mental health services without permission.) 800-365-4044
Public Community Mental Health COUNSELING SERVICE OF ADDISON COUNTY, 89 Main St.,
Middlebury, 05753; 802-388-6751
UNITED COUNSELING SERVICE OF BENNINGTON COUNTY;
PO Box 588, Ledge Hill Dr., Bennington, 05201; 802-4425491
CHITTENDEN COUNTY: HOWARD CENTER, 300 Flynn Ave., Burlington, 05401; 802-488-6200
FRANKLIN & GRAND ISLE: NORTHWESTERN COUNSELING AND SUPPORT SERVICES, 107 Fisher Pond Road, St. Albans, 05478; 802-524-6554
LAMOILLE COUNTY MENTAL HEALTH SERVICES, 72 Harrel
Street, Morrisville, 05661; 802-888-5026
NORTHEAST KINGDOM HUMAN SERVICES, 181 Crawford
Road, Derby; 802-334-6744; 800-696-4979, 2225 Portland St., St. Johnsbury; 802-748-3181; 800-649-0118
ORANGE COUNTY: CLARA MARTIN CENTER, 11 Main St.,
Randolph, 05060-0167; 802-728-4466
RUTLAND MENTAL HEALTH SERVICES, 78 So. Main St., Rutland, 05701; 802-775-2381
WASHINGTON COUNTY MENTAL HEALTH SERVICES, 9 Heaton
St., Montpelier, 05601; 802-229-6328
WINDHAM AND WINDSOR COUNTIES: HEALTH CARE AND REHABILITATION SERVICES OF SOUTHEASTERN VERMONT,
Crisis Text Line
390 River Street, Springfield, 05156; 886-4500; 51 Fairview St., Brattleboro, 05301, 802-254-6028; 49 School St., Hartford, 05047, 802-295-3031
LGBTQ Youth Crisis Hotline:
24-Hour Crisis Lines: Involuntary Custody Screening
Around-the-clock help via text: 741741 for a reply explaining the ground rules; message routed to a trained counselor.
The Trevor Lifeline now at 866-488-7386. TrevorText Available on Fridays (4-8 p.m.). Text the word “Trevor” to 1-202-304-1200. Standard text messaging rates.
NAMI Connections Support Groups
BENNINGTON: Every Tuesday 12-1:30 pm; United Counseling Service, 316 Dewey Street, CRT Center BURLINGTON: Every Thursday 3-4:30 pm; St. Paul’s Epis-
copal Cathedral, 2 Cherry Street (enter from parking lot)
BERLIN: Second Thursdays each month, 4-5:30 pm; Central Vermont Medical Center Board Room, 130 Fisher Road.
RUTLAND: Every Sunday 4:30-6 pm; Wellness Center (Rutland Mental Health) 78 South Main St. (enter from Engrem St.) ST. JOHNSBURY: Thursdays 6:30-8 pm; Universalist Unitarian Church, 47 Cherry St.
NATIONAL ALLIANCE ON MENTAL ILLNESS-VT (NAMI-VT)
802-876-7949 x101, 600 Blair Park Road, Suite 301, Williston, VT 05495; www.namivt.org; firstname.lastname@example.org
ADDISON COUNTY: Counseling Services of Addison County 802-388-7641
BENNINGTON COUNTY: United Counseling Service, 802442-5491; (Manchester) 802-362-3950 CHITTENDEN COUNTY: Howard Center (adults) 802-4886400; First Call: (child/adolescents) 802-488-7777
FRANKLIN AND GRAND ISLE COUNTIES: Northwestern Coun-
seling and Support Services, 802-524-6554; 800-834-7793
LAMOILLE COUNTY: Lamoille County Mental Health, Week-
days 8 a.m.-4 p.m. 802-888-4914; Nights and weekends 802-888-4231
ESSEX, CALEDONIA AND ORLEANS: Northeast Kingdom
Human Services 800-696-4979
ORANGE COUNTY: Clara Martin, 800-639-6360 RUTLAND: Mental Health Services, 802-775-1000 WASHINGTON COUNTY: Mental Health Services, 802-229-0591 WINDHAM,WINDSOR COUNTIES: Health Care and Rehabili-
tation Services, 800-622-4235
Please contact us if your organization’s information changes: email@example.com Veterans’ Services
Vermont Veterans Outreach
BENNINGTON AREA: 802-442-2980; cell: 802-310-5391 BERLIN AREA: 802-224-7108; cell: 802-399-6135 BRADFORD AREA: 802-222-4824; cell: 802-734-2282 COLCHESTER AREA: 802-338-3078; cell: 802-310-5743 ENOSBURG AREA: 802-933-2166; cell: 802-399-6068 JERICHO AREA: 802-899-5291; cell: 802-310-0631 NEWPORT AREA: 802-338-4162; cell: 802-399-6250 RUTLAND AREA: 802-775-0195; cell: 802-310-5334 VERGENNES AREA: 802-877-2356; cell: 802-881-6680 WHITE RIVER AREA: 802-295-7921; cell: 802-881-6232 WILLISTON AREA: 802-879-1385; cell: 802-734-2123 OUTREACH TEAM LEADER: 802-338-3022; cell: 802-881-5057 TOLL-FREE HOTLINE (24/7) 1-888-607-8773
HOMELESS PROGRAM COORDINATOR: 802-742-3291 BRATTLEBORO: Morningside 802-257-0066 RUTLAND: Open Door Mission 802-775-5661; Transitional Residence: Dodge House, 802-775-6772
BURLINGTON: Waystation/Wilson 802-864-7402 FREE TRANSPORTATION: Disabled American Veterans:
Toll Free: 1-866-687-8387 X5394
Vermont Veterans Services (VVS) program for homeless veterans with very low income, call 802-656-3232.
ST. JOHNSBURY, Kingdom Recovery Center, 297 Sum-
WHITE RIVER JUNCTION, Upper Valley Turning Point, 200 Olcott Dr; 802-295-5206; firstname.lastname@example.org; secondwindfound.org
Web site sponsored by The Department of Veterans Affairs with testimonials by veterans to help connect with the experiences of other veterans, and with information and resources to help transition from service, face health issues, or navigate daily life as a civilian.
mer St; 802-751-8520; email@example.com; j.keough@ stjkrc.org; www.kingdomrecoverycenter.com
Counterpoint publishes this resource directory to allow readers to seek out choices for support. Counterpoint has not reviewed or evaluated the quality or biases of these resources, and makes no representation about their value for any individual.
VA Mental Health Services
VA HOSPITAL: Toll Free 1-866-687-8387 MENTAL HEALTH CLINIC: Toll Free 1-866-687-8387 Ext 6132 OUTPATIENT CLINICS: Bennington: 802-447-6913; Brattleboro: 802-251-2200; Burlington Lakeside Clinic: 802-6577000; Newport: 802-334-9777; Rutland: 802-772-2300 VET CENTERS: (Burlington) 802-862-1806; (White River Jnct) 802-295-2908