NEWS, COMMENTARY, AND ARTS BY PSYCHIATRIC SURVIVORS, MENTAL HEALTH PEERS, AND OUR FAMILIES
VOL. XXXIII NO. 3
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FROM THE HILLS OF VERMONT
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SINCE 1985
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WINTER 2018
Hospital Stands By Locked Bathrooms Retreat Denies Receiving Multiple Patient Complaints By ANNE DONAHUE Counterpoint BRATTLEBORO – The Brattleboro Retreat adopted a new policy this year to lock all bathrooms on inpatient units, requiring patients to ask staff for help to access the toilets. The psychiatric hospital’s policy was met with outrage by survivor advocates, who described it as “a serious affront to patient dignity” and filed a complaint with the state, but the hospital’s chief nursing officer, Meghan Baston, said it was a necessary safety measure that was initiated after a patient attempted suicide in February. Baston said that no patients had complained about access being delayed. “That is a blatant lie,” said Kaz DeWolfe, communications coordinator for Vermont Psychiatric Survivors. The complaint filed with the state cited “over 30 written complaints” that the Retreat itself had acknowledged receiving. “There have been multiple grievances from patients who found it dehumanizing and degrading,” DeWolfe said. “They are ‘handing’ bathroom grievances on the units and not filing them or tracking them. They are probably all being thrown away.” In one instance, VPS filed a grievance on behalf of a patient “who lost control of their bladder while waiting for staff to unlock the bathroom,” DeWolfe
said. They said the patient never received a response to the grievance. The state’s Division of Licensing and Protection, which oversees whether hospitals meet standards of care, said it found no regulatory violations related either to the bathroom policy or the attempted suicide when it conducted an unannounced site visit in March. Suzanne Leavitt, the division director, noted that its authority is limited to enforcing “minimum standards” based in regulations set by the Centers for Medicare and Medicaid Services. Reviewers “did not find any access was restricted” because there were always staff available in the hallways, said Sarah Sherbrooke, RNMS, the nurse surveyor who handled the investigation. Because the purpose was “for monitoring safety of the environment” and hospitals elsewhere in the country had similar policies, it could not be considered a deviation from an accepted practice, she said, even if other better alternatives might exist. Baston said the Retreat was not planning to look into other options itself, and that “this is the set policy.” Mourning Fox, interim commissioner of the Department of Mental Health, said that as soon as he heard about the policy in November, he contacted the administration at the Retreat. While safety is important, “we can’t forgo treating people with respect (Continued on page 4)
Safe Haven: 20 Years of Support
After completing $400,000 worth of renovations, the Another Way peer center in Montpelier celebrated in November with an open house that featured member art. More photos of the art display are on page 14. (Counterpoint Photo: Anne Donahue)
Disability Rights Vermont New Annual Priorities
RANDOLPH – Twenty years ago, a unique collaboration was born here: a home that was run by psychiatric survivors with clinical support by a community mental health agency and family member volunteers. Safe Haven was a federally funded national program for homeless adults struggling with mental health stability. What made it different from the other programs was that the support staff in the residence were hired and supervised by Vermont Psychiatric Survivors, clinicians came from the Clara Martin Center, and other support was provided by NAMI Vermont. It was a time before the term “peer support” was in common use, and despite many other changes over the years, that core piece has remained the same. The
four individuals who operate the home are known as recovery staff, and all identify themselves as having lived experience with a mental illness. Two of the current staff were once guests at Safe Haven. In all, 166 guests have come through the doors of the large, Victorian-style home, staying an average of seven to eight months with a primary goal of finding long-term stable housing. Stable housing, for Alex DeLeon, means that he is still living in the same apartment that he found 14 years ago with the help he received at Safe Haven. He said that for many years, he supported himself through the disability income he received based on his diagnosis of schizophrenia. Five years ago, he heard there was a job opening at (Continued on page 5)
8 The Arts12
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Rethinking Bipolar
2 Peer Leadership and Advocacy Meeting Dates and Membership Information for Boards, Committees and Conferences 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 info@vermontpsychiatricsurvivors.org.
COUNTERPOINT EDITORIAL BOARD
The advisory board for the Vermont Psychiatric Survivors newspaper. Assists with policy and editing. Contact counterpoint@vermontpsychiatricsurvivors.org.
ALYSSUM Peer crisis respite. To serve on board, contact Gloria at 802-767-6000 or info@alyssum.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, Berlin, check DMH website for dates at mentalhealth.vermont.com.
BRATTLEBORO RETREAT
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.
RUTLAND REGIONAL MEDICAL CENTER
Community Advisory Committee, fourth Mondays, noon, conference room A.
UNIVERSITY OF VERMONT MEDICAL CENTER
State Committees ADULT PROGRAM STANDING COMMITTEE
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. For further information, contact Marla Simpson, (marla.simpson@ymail.com) or Daniel Towle (dantowle@comcast.net).
LOCAL PROGRAM STANDING COMMITTEES
Advisory groups required for every community mental health center. Contact your local agency for information about meetings and membership.
How to Reach The Department of Mental Health:
802-241-0090 mentalhealth.vermont.gov 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
Program Quality Committee, third Tuesdays, 9-10 a.m., McClure bldg, Rm 601A.
Facebook and Web Sites WELLNESS WORKFORCE COALITION
www.vcil.org/services/wellness-workforce-coalition Trainings, events and meetings of the Wellness Workforce Coalition.
MAD IN VERMONT
www.facebook.com/groups/madinvermont Venue for peer support, news, and advocacy/activism organizing in Vermont. “Psychiatric survivors, ex-patients/inmates, consumers, human rights activists and non-pathologizing allies are welcome.”
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
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
Rights when dealing with service organizations such as Vocational Rehabilitation. Box 1367, Burlington VT 05402; 800-747-5022.
HEALTH CARE ADVOCATE To report problems with any health insurance or Medicaid/Medicare issues in Vermont 800-917-7787 or 802-241-1102. 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 of experiencing emotional, behavioral or mental health challenges. 800-639-6071, 802-876-7021.
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 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, Emma Harrigan, 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 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. Financial support does not imply support, agreement or endorsement of any of the positions or opinions in this newspaper; DMH does not interfere with editorial content.
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.
Have News To Share? Send it to Counterpoint! The Service Building, 128 Merchants Row Suite 606, Rutland, VT 05701 Email: counterpoint@ vermontpsychiatricsurvivors.org
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NEWS .
WINTER 2018
3
ROUND UP In Commentary
In the News Locked Bathrooms
The Brattleboro Retreat began a new policy of locking patient bathrooms this year, claiming that it was a necessary safety measure. Psychiatric survivor advocates objected, calling it an assault on patient dignity, and the Department of Mental Health has asked the Retreat to consider alternatives. Coverage begins on page 1.
Services Instead of an ONH?
Information, Please
A committee appointed by the legislature to This issue’s editorial asserts that greater review whether changes should be made to the information sharing is necessary to allow state’s involuntary outpatient commitment law psychiatric survivors to participate in improving (orders of nonhospitalization, or ONHs) reached services and that it should be demanded of the no consensus apart from a recommendation state. Page 16. for a pilot program. The pilot would provide enhanced voluntary services for those who Is Peer Support at Risk? Two readers share responses to the fall would otherwise be placed on an ONH. Vermont Psychiatric Survivors, a member of the Counterpoint article that examined the risks to Whether bathrooms should be locked committee, presented a position paper arguing peer support when it becomes part of the mental based on safety concerns is the new poll to eliminate the use of ONHs altogether, but it health system. Page 16. question for this issue of Counterpoint. See was not adopted. Coverage on pages 10-11.
poll on page 11.
The fall Counterpoint telephone poll asked whether ONHs had any value for psychiatric The University of Vermont Health Network survivors. The answer was a resounding completed its first phase of planning for a “no.” Poll response is on page 11.
UVM Outlines 35-Bed Need
psychiatric hospital expansion and asserted that 29 to 35 new beds would be needed in the state to address the unmet need that has led to long waits in emergency departments. At a hearing before the Green Mountain Care Board, others questioned whether the plans put enough focus on developing community and peer support alternatives. Coverage on page 7.
Hospital Abuses Surge In an eight-month period beginning in February, hospitals were cited nine times for violations of psychiatric patient rights and safety. Six of the investigations involved emergency rooms. Several cases involved improper use of police for health care, including one situation in which a patient was hit with a baton and shocked with a Taser. Coverage on pages 4-5.
Discharge to the Streets
A Brattleboro resident tells his city council that releasing a patient from a hospital to a homeless shelter is not appropriate discharge planning. Page 17.
20 Years of Peer Support
Involuntary ECT
Safe Haven in Randolph began 20 years ago as a unique partnership between the Clara Martin Center, Vermont Psychiatric Survivors and NAMI Vermont. Although the program has evolved, one thing has stayed the same: the house staff are peers who have lived with mental health challenges themselves. Alex DeLeon and Rick Braun shared their stories. Coverage begins on page 1.
A contributor shares the experience of torture he felt through the trauma of being forced to have electroconvulsive therapy in Connecticut. Page 18.
ECT Policy Revised
The Department of Mental Health reported that Springfield Hospital is in the process of revising its policy and procedures for its new electroconvulsive therapy program. The original policy, first made public in the fall Counterpoint, had allowed for ECT on children and for seeking Responders Hear Survivors court orders for ECT on patients who were Police, dispatchers and emergency room staff competent but refusing the treatment. Coverage in Brattleboro participated in a presentation on on page 10. improving responses to people experiencing a psychiatric crisis. Presenters included staff from Vermont Psychiatric Survivors and a woman who had reported being injured as a result of police use of force. “Try to be compassionate,” Rx, A Graphic Memoir Rachel Lindsay of Burlington chronicled Chrystal Cheney told the first responders. her involuntary hospitalization in a graphic Coverage on page 6. novel released this fall. She spent the fall on ‘Lived Experience’ at Work tour, presenting the book at conferences and A panel of psychiatric survivors shared what medical schools. Counterpoint reviewed the it meant to them to use “lived experience” as book, which includes biting indictments of the part of their jobs supporting peers. The panel pharmaceutical and hospital system, but in was presented at the annual meeting of Vermont which she reaches peace with a bipolar diagnosis. Psychiatric Survivors, a statewide membership Sample pages from the memoir are reproduced. organization. Coverage on page 6. Coverage on pages 12-13.
In the Arts
When Advocacy Overwhelms Counterpoint columnist Calvin Moen describes the intense challenge of advocacy when in a room filled with people who want to deny others’ basic human rights. He takes solace in the knowledge that he is not alone but is part of a broader community fighting oppression. Page 19.
Peer Respite Instead Confronted with the damage caused by hospitalization, Counterpoint columnist Kaz DeWolfe makes the case that peer respites would be a far better alternative to the current plans to expand the number of inpatient beds in the state. Page 20.
Rethinking Bipolar Experiences labeled as bipolar disorder can be understood more accurately as the brain’s “fight or flight” mechanisms, which are influenced by trauma, explains Sarah Knutson. She predicts that the diagnosis will eventually cease to exist. Page 21-22.
Hospital Trauma Vermont artist Phoebe Sparrow Wagner describes in detail the extreme traumas she experienced through restraint and seclusion in a hospital. Pages 22-23.
New Members Sought for Statewide Committee WATERBURY – Members of the Adult State Program Standing Committee on Mental Health are recruiting for new members, “looking for people who want to have an impact on the mental health community.” Daniel Towle, a current member, described the committee as a “committed group of Vermonters” who evaluate the quality and responsiveness of mental health services, assist in the hiring of key Department of Mental Health management and review data on grievances to look for trends. Towle said the commissioner of DMH and his senior staff give the committee insight into the latest developments it hears from experts in
the field. “The committee is also a voice of the community” to DMH and policymakers, he said. The committee is currently recruiting members for all three of the groups that are represented: people with lived experience with mental health conditions, family members of those with mental health symptoms, and mental health professionals. The committee meets on the second Monday of each month from 12-3 p.m. in Waterbury. Towle said interested people are required to attend at least two meetings before they may become members. “If the prospective member and the committee
then agree to move forward, the committee votes to recommend to the governor to appoint the candidate,” he said. Members are reimbursed for mileage and receive a stipend for meetings. Towle said further details are available by contacting him at dantowle@comcast.net or Marla Simpson at marla.simpson@ymail. com. Information is also available on the committee’s website, mentalhealth.vermont. gov/state-program-standing-committee. Those considering joining should contact Eva Dayon at eva.dayon@vermont.gov.
4 NEWS
WINTER 2018
Citations for Hospital Abuses Surge WATERBURY – Twenty-six investigations resulted in 13 hospitals being cited with violations of hospital standards between February and September, and nine of them related to the rights or safety of people receiving psychiatric interventions. Six of the nine took place in emergency rooms. Complaints were wide ranging, including use of a Taser on a patient, a forced drug injection without asking if a patient would take it willingly, a drug interaction in an elderly patient that brought on a cardiac emergency, and the failure to search for hazardous items after a suicide attempt. It was an unprecedented number of violations, far exceeding the number that occurred in 201112 when many small hospitals in the state were first coping with patients experiencing lengthy emergency room waits after Tropical Storm Irene closed the Vermont State Hospital. “It is troubling, but not surprising,” said Ed Paquin, executive director of Disability Rights Vermont. He said that his agency staff often help patients file complaints, but “rarely do these complaints receive the attention that has been given to the cases reported recently.” “If this is a sign of better state oversight it is a good sign indeed.” Mourning Fox, interim commissioner of the Department of Mental Health, said that “as soon as we got notice of these happening” he assembled a team of both clinical and legal staff
to meet with the emergency rooms involved, and later, to meet with the state’s emergency room directors as a group. “I could not believe what I was hearing” in the descriptions of some of the incidents, he said. Fox said the DMH staff teamed up directly with staff from Licensing and Protection to present information about both the legal standards and alternatives for addressing a crisis.
“If this is a sign of better state oversight it is a good sign indeed.” Devon Green of the Vermont Association for Hospitals and Health Systems said that VAHHS had “heard anecdotally about an increase in Vermont hospital admissions generally that may be contributing to an already stressed system.” She said the state’s hospitals are making investments in inpatient expansion, community health teams, and telemedicine to help reduce and alleviate treatment delays. The following were the hospitals and the violations reported by the state’s Division of Licensing and Protection: University of Vermont Medical Center, Burlington, February: violation of rights of
five patients for not discontinuing seclusion at the earliest possible time, based on a policy to maintain seclusion up to an hour after a patient falls asleep. A violation also occurred when the hospital did not involve a patient in treatment planning in transferring them to another hospital after serious injuries from repeated altercations with a second patient. UVMMC had two other surveys that found no violations. Brattleboro Retreat, Brattleboro, March: violation of rights of a 75-year-old patient who suffered a cardiac emergency after involuntary medications and was then repeatedly subjected to restraint and seclusion, resulting in multiple bruises. There was no evidence demonstrating a need for the length of restraint, and the patient’s age and health condition were not taken into consideration. The Retreat had three other surveys with no violations found during the eightmonth period of reviews, and a representative told a legislative committee in October that it had received only positive reviews, omitting the March violations. Northeastern Vermont Regional Hospital, St. Johnsbury, April and June: violations of rights of patients reported in the fall issue of Counterpoint, based on the failure to prevent an 11-year-old boy from fleeing the emergency room, and using law enforcement to stop another suicidal patient from leaving by tackling the patient to the ground in the parking lot. (Continued on page 5)
HOSPITAL STANDS BY LOCKED BATHROOMS • Continued from page 1 and dignity,” he said. “I expressed my concerns, and I was assured they were going to look at alternatives,” he said. After hearing about the Retreat’s later response to Counterpoint, Fox said that he was contacting the Retreat administration again to press the issue further. “We do have a contract with them” for care on at least one unit, and there are other patients there also under the care and custody of the commissioner, he said. Fox said he felt “no person should suffer the embarrassment and potential trauma from not being able to access a bathroom when needed.” “If somebody has a solution that is not locking the doors, I would absolutely love to hear it,” Baston said, adding that she was “open to other people’s solutions” but had already “put a lot of work” into the decision on the Retreat policy. She said major psychiatric centers around the country have the same policy. Baston said that when she came to the Retreat from New Hampshire just over a year ago, she was disturbed by the unlocked commonarea bathrooms because she believed it could create a risk for some patients. If they were in the bathroom without staff knowledge, it could cause a delay in locating them. Despite that concern, she “went along with the status quo” until a patient attempted suicide in one of the bathrooms. That morning, she told staff that “all these doors need to be locked,” Baston said. Baston acknowledged that there were other areas on a unit, such as bedrooms, where patients are not immediately visible. From her perspective as a psychiatric nurse, she would say those should also be locked, she said, but that it “feels like it would be perceived as a really big injustice” and so would not seek it as a policy. Asking to unlock a bathroom is “not very
different from asking for other things they need,” she said. Baston said the Retreat was in a different position from other Vermont hospitals because the bathrooms have common access from the hallway rather than being located inside each bedroom. The result is “the inability to determine individually who is safe” to have their personal bathroom left unlocked, she said; the only way to create that safety level for high-risk individuals is by locking the common bathrooms to all patients. Baston said the issue was those patients who are on 15-minute checks to verify their safety. If, at a 15-minute interval, the patient cannot be immediately located, the patient’s room is the first place checked, she said. If a patient is not found there, it would add time to check if they are in the bathroom, she said. “We would have gotten to [the patient] more quickly” in the case of the suicide attempt if staff knew the patient was in the bathroom because they had recently unlocked the door for them, Baston said. Counterpoint was unable to establish that any Vermont hospitals with psychiatric units have policies to lock individual patient bathrooms based on individualized safety assessments. VPS staff who visit all the hospitals in their duties as patient representatives said they have never seen a practice for any locking of bathrooms. Disability Rights Vermont, which has staff providing federal protection and advocacy services at all Vermont hospitals, said that it knew of only one situation in which a patient was locked out of the bedroom during the day for safety. Sherbrooke, the Licensing and Protection nurse investigator, said that an investigation considers whether there are direct patient
grievances, and there were none that came to the division. Baston said that “patients for the most part are not upset” about the policy and that she had never heard about the complaint VPS cited of a patient who soiled themselves because of lack of access. “If I did, it would be remedied immediately,” she said. The only grievances the Retreat has received turned out to be based upon patient concerns about having to inconvenience the staff, Baston said. She said that one patient said, “I feel badly for the staff,” and therefore filed a grievance but was reassured after being told staff are always “thrilled” to meet patient needs. VPS staff questioned that. “In four years of visiting the Retreat, I have never heard of a patient filing a grievance on behalf of a staff person,” said director of training Calvin Moen. Another staff member pointed to “a collective grievance filed by a group of patients on Osgood 2 when the bathroom rule was first instituted.” “Being denied autonomy around one’s basic bodily functions – being made to ask permission to relieve oneself – is not only dehumanizing and humiliating, it creates another opportunity for staff to abuse power or take out resentment on patients,” Moen said. The complaint by VPS to Licensing and Protection cited concerns about patients with continence issues and those “who experience nausea as a side-effect of medication who have had difficulty accessing a restroom in time to avoid vomiting on the floor.” The complaint said the policy was “a serious affront to patient dignity, threatens healthy sanitary conditions in the facility, and does not provide the least restrictive care that is the right of Vermonters committed to a locked facility.”
NEWS . NEWS
WINTER 2018 SAFE HAVEN: 20 YEARS OF SUPPORT • Continued from page 1
Safe Haven and applied. “Helping others has helped me,” he said in a recent interview with Counterpoint. At Safe Haven, “you’re helping people out. You’re there for people, to listen,” DeLeon said. “That helps you, too.” Rick Braun has also worked at Safe Haven for the past five years and believes his experience
Rick Braun with depression and alcoholism helps him to connect with the guests. “They don’t feel they’re alone in their struggle,” he told Counterpoint. “It makes the journey a little bit easier. You need other people.” Vermont Psychiatric Survivors ended its affiliation with Safe Haven four years ago to reduce administrative costs after Clara Martin committed to continuing to hire peer staff, and NAMI Vermont slowly dropped out of its involvement over the years. The federal government also dropped out just a year ago, ending its funding for Safe Haven programs around the country. The Department of Mental Health paid to keep it running in Vermont. Visiting the home has much the same feel as it did after it opened to great acclaim 20 years ago. Sen. Patrick Leahy was on hand for the ribbon cutting, which was documented in a photo taken by Counterpoint that hangs on a wall in the home and was on display at a picnic this summer to celebrate the anniversary.
generally oversee the residence, but the most important role, Braun explained, is that “I try to be there for them. I try to encourage them.” He said that he thinks leading by example is the key. “To see someone who survived” helps to give residents hope, he said. “You have to persevere, stick it out, it will get better,” he said he tells them. “I’m able to be a little more empathetic” because of personal knowledge of the same experiences, he said, in particular for residents who are still drinking when they arrive at Safe Haven. Braun, who is 53 and was born here, said he suffered from depression “quite a bit of my teen life” and turned to drinking. He became sober 30 years ago, he said, but then started drinking again in 2008 after hitting several traumatic events in life. The former licensed practical nurse lost his job at a nursing home and saw his relationship with his children, in their young teens at the time, suffer, he said. “Things were really bad.” He was hospitalized for his depression several times, and when he was discharged from his last hospitalization at Rutland Regional Medical Center “my main goal at that point was establishing a support system.” That system became the Clara Martin Center, Alcoholics Anonymous, and friends at his church after he “came home to religion,” Braun said. He “put the cork in the bottle” in August 2012. A year and a half later, a friend introduced him to the job opportunity at Safe Haven, and working there “just gets better and better,” he
Rick’s Story On a recent day, the smell of a roast filled the kitchen. The recovery staff cook dinner and
Alex DeLeon
5
said. “I believe in making progress even in small steps.” He said he stopped smoking “1,031 days ago.” Braun said he tries to keep “an attitude of gratitude” and recognizes how fortunate he has been. “I don’t take that for granted.” He now feels things like serenity and peace; “I never thought I would feel them again. I feel things like hope, where before, I felt no hope. “I like doing what I’m doing,” Braun said. “No one is immune to problems.”
Alex’s Story DeLeon “had nowhere to go; nowhere to live” when a case manager referred him to Safe Haven in 2004. Then 24, he had been drifting for several years after a diagnosis of schizophrenia. He was hearing voices, and “stable work wasn’t really happening.” He left a ski clerk job at Killington – a job he took primarily for the snowboarding opportunities – and then moved to New Mexico and worked off and on for his father there. That situation fell through, DeLeon said, and he was living homeless and coping with symptoms until ending up for six months at a Las Vegas Medical Center program, which helped some. From there, it was back to Vermont, and then Safe Haven. The crucial help he received was in finding housing, he said. He left Safe Haven 14 years ago “to this apartment,” he said, sitting in his living room for the interview. After five years collecting Social Security and no longer having mental health symptoms, he decided, “I wouldn’t mind getting a job and working.” DeLeon said that having a disability and having been homeless means he can relate to the guests at Safe Haven. “I know what I’ve been through,” and it “helps [me] understand their situation.” Although he doesn’t share his personal story directly, residents know why he is working there, he said. DeLeon said he tells the guests, “It’s about accepting your disability, and this is what you can do to help you get through it, to be mentally stable.” He finds personal support through living in an accepting community, he said. “That’s what’s great” about Randolph, he said. “It’s good to have a caring community. That’s why I’ve been able to live here so long. “It goes to show [that] even with a diagnosis of a disability you can still be a part of a community. You can still function. “You don’t have to be in and out of hospitals. It’s not like you’re at a dead end. You can still lead a normal life.”
CITATIONS FOR HOSPITAL ABUSES • Continued from page 4 Copley Hospital, Morrisville, May: violation of rights through the use of police to handcuff a suicidal patient who tried to leave the emergency room, and later to assist with applying restraints, when law enforcement is not permitted to be used for patient care when a person is not in police custody or being charged with a crime; a violation regarding a second patient who was restrained and medicated contrary to required procedures. University of Vermont Medical Center, Burlington, June: violation of the right of a patient to informed consent by involuntarily injecting them with medication in the emergency room without offering the opportunity to take it voluntarily. Vermont Psychiatric Care Hospital,
Berlin, July: failure to conduct required weekly searches for dangerous items, even in the weeks after a patient attempted suicide in June using a choking ligature created from items on the unit. VPCH has an advisory committee to assist with quality oversight, but the committee was never told about the suicide attempt and was told that the inspection by the state had resulted in no violations. Northwestern Medical Center, St. Albans, September: violation of patient rights through failure to remove hazards from the patient room in the emergency department which enabled them to use a bed as a barricade, and using police officers to monitor the patient due to lack of adequate staffing; failing to remove hazards from a second patient’s room, who was
able to throw items and use a plastic bag for self-harm; using police as a coercive presence while giving involuntary medication to another patient, when law enforcement is not permitted to be used for patient care when a person is not in police custody or being charged with a crime. Northeastern Vermont Regional Hospital, St. Johnsbury, September: failure to provide adequate staffing, resulting in intervention by sheriff’s officers when a patient reacted defensively to being told they were about to be restrained for involuntary medication. The first officer who entered the room as part of a 12-member “code” team was knocked to the floor and returned punches to the patient, a second officer used baton strikes, and a third officer used a Taser.
NEWS 6 NEWS
WINTER 2018
Panelists Share ‘Lived Experience’ Jobs RUTLAND – Three psychiatric survivors shared their perspectives on their jobs as related to their own experiences with oppression in the mental health system at a panel presentation at the Vermont Psychiatric Survivors annual meeting in October. The discussion, moderated by Calvin Moen of VPS, ranged from how they reached their current perspectives about the system to what is meant by the term “person with lived experience.” “It’s a funny term,” said Malaika Puffer. “I’m pretty sure [everyone] has been alive … having experiences all along.” “The stuff that gets put there” as a definition is actually what everyone experiences and is not separable into different categories, she said. Puffer is in a peer support position at Health Care and Rehabilitation Services, the mental health agency for southeastern Vermont. What connects them with those currently receiving services in the system is broader, said Kaz DeWolfe. It is “victimhood as expertise” through experiences of coercion and discrimination that “gives us a perspective that other people don’t necessarily have,” they said. Kaz is the communications coordinator at VPS. J Helms, who also works for HCRS, agreed that “oppression and marginalization” are what most
people have an experience of. They became involved in peer support work after “feeling increasingly invalidated and harmed by the medical model” of care, they said. Moen asked the panelists how their various identities drew them into their work. DeWolfe said that being queer and transgender is similar in the inability to feel safe in society, and that they also had “poverty as a marginalized identity.” “Everything intersects as aspects of who I am.” “My experiences within my body and mind every day” are what they see as being “lived experience.” Puffer said that for her, “being a psychiatric survivor is the identity that has been the place where the most oppression has happened and I feel the most anger.” Helms raised the issue of connections to other identities that become “limited by categories and boundaries.”
“My rejection that gender is binary and my rejection of the medical model” are parallel, they said. In both cases people are being told there’s something wrong with them instead of being told, “Your feelings are valid, and there’s nothing wrong with you.” “My emotional experiences were being problematized and labeled by others for me,” Helms said. The message was, “This is a problem, this doesn’t work for me, you have to fix this.” After experiencing a life crisis, receiving a psychiatric diagnosis based on a 10-minute interview sent the message that there was “something wrong with my brain because I had big feelings” about a trauma, Helms said – and it made them really angry. Puffer said hearing a speaker at a conference was when a “huge, huge lightbulb” went on. “I had this whole picture of my life, [but] there was some missing piece.” Being introduced to the work of Judi Chamberlin and Robert Whitaker about alternative explanations for distress was a whole new perspective that enabled her to look at her life and see that “it all made sense.” It is an awareness that Puffer said she would like to see broaden into more public forums and schools. “So much depends on the public narrative.” From left, Malaika Puffer, J Helms, Kaz DeWolfe, Calvin Moen
First Responders Hear from Survivors
BRATTLEBORO – A psychiatric survivor who had experienced injury at the hands of police teamed up with advocates in a presentation at a 2018 emergency services symposium focused on mental health and trauma-informed care. “It is a really hopeful moment to be collaborating in this space,” said Calvin Moen, director of training at Vermont Psychiatric Survivors, as he opened the presentation hosted by Brattleboro Memorial Hospital. “I want to make peace with everybody,” Crystal Cheney told the group, despite being forcibly dragged off her recliner, where she was sitting quietly, to be taken to the hospital last year. Cheney stood in front of the group of police, emergency department staff and medical responders in her first public presentation to communicate her personal experiences. She told Counterpoint in a lengthy interview last spring that she wanted to share her story to help others avoid experiencing the same harms. The audience appeared to range in their reactions from being receptive, to questioning, to hostile. Near the closing, one emergency department nurse said it was frustrating to hear the speakers because statistics show that nurses are the victims of violence from patients: “That’s the reality of it.” Moen told the nurse that VPS came “trying to have a conversation” to address violence and it was hard to hear a reaction from medical personnel that turned the conversation into a statement that “we also get harmed.” “Try to be compassionate,” Cheney said to the nurse. Cheney and the VPS staff, which also included peer advocate Conor Cash, urged emergency responders to “assume that most people have experienced some trauma” and use that awareness when assessing a situation. “If somebody’s behavior doesn’t make sense to
you, it makes sense to them,” Moen said. He noted that if there is violence prom a patient it is usually “self-defense to a perceived threat.” Identifying what can be done differently means trying to see what went into creating that perceived threat that caused the reaction, he said. One emergency room nurse asked, “What else can we be doing? We provide food and safety [sometimes for] three, four, five days. We really try. I don’t know what more we can do.” Cheney said the most important thing was “listening to the person.” “Call my doctor. Believe me,” she said. Moen agreed. Although there is a perception that people in active stress don’t have an ability to express themselves, that isn’t true, he said. He told the first responders that the power imbalance reinforces the feeling of powerlessness that trauma has created. A police intervention creates the same loss of bodily autonomy, and thus, retraumatization. A member of the audience asked how it was possible to take a person’s history into account when “you have limited information … you have to make split-second decisions.” “How can these responders do things differently?” A police dispatcher later added an example of the challenge of interpreting behavior in that moment of time, when first responders have to decide, “Is it non-communicative or is it non-compliance?” if a person is not following directions. Cash said that people in stress need space and validation of the situation, regardless of whether there is an intervention of some type. In some situations, validation may mean saying, “This sucks; I’m sorry.” Another officer said that advocates needed to know more about “how we do what we do
and why we do what we do” before making assumptions, suggesting there was “stigma in reverse” against the police. People are “taken for medical care without their consent” in other situations, he said, giving the example of a person with a stroke. “Some protocols we can’t change.” He suggested meeting with the heads of emergency responder services to exchange “information that can go both ways.” Moen said the presentation “is the beginning, not the end” of a dialogue. “We could take it so much further,” he agreed. During an earlier part of the symposium, the emergency response staff heard from Matthew Dove, a psychiatric nurse in a recently created position at the hospital’s emergency room. “When you escalate, someone else will escalate,” he told them. Regardless of what is causing a confrontation, “maybe everybody needs that pause” to assess the situation. “Your role is to keep everyone safe.” Both in the discussion with Dove and later with the VPS presenters, Brattleboro Police Capt. Mark Carignan raised the challenges and complexities that he said police face in the moment of an emergency. “The behavior that manifests itself” can appear the same whether it is a mental health crisis or a criminal activity, he said. “How do you train … a 23-year-old in the police academy” about making that distinction regarding “in the moment, force” if the person “needs to be arrested?” he asked. An officer has to think, “For this person, if I give them a little more time” it could make a positive difference, but if it is a person engaged in criminal activity, that pause could increase the danger, Carignan said. “It is a conversation we are always having,” he said.
NEWS . NEWS
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Report Says Up to 35 Hospital Beds Needed To Prevent Psych ED Waits
MONTPELIER – The University of Vermont Health Network reported in late November that, according to its analysis, between 29 and 35 new psychiatric hospital beds are needed in Vermont. It has determined that these additional beds would prevent patients from being denied care or from having to wait for admissions. During the public comments that followed the presentation before the Green Mountain Care Board, several people questioned whether the analysis had adequately considered community supports that could prevent hospitalization or enable discharges sooner. The GMCB is overseeing proposed construction of new inpatient beds located at the Central Vermont Medical Center campus of the UVM network. The network’s executives told the board it is ready to begin the next phase, which is to consider how the programming for the new beds will be developed. Eli Toohey, the executive director of Another Way, asked how the medical center would enhance peer services as a way to reduce the need for hospital stays. She pointed to a report from the Department of Mental Health last year that said more should be invested in peer respite programs, peer community centers, peer-supported housing, and peer support in emergency departments. Another Way is a peer-run center in Montpelier. Julie Tessler from Vermont Care Partners – the organization of community mental health centers – said that more analysis was needed for the broader system of mental health care to explore whether less hospital use was possible. She gave the example of elderly patients, who sometimes stay for as long as a year in a hospital bed because of the lack of an adequate geriatric program. “I wouldn’t want to go full throttle ahead” in deciding on the number of new hospital beds without knowing that resources were being invested wisely, Tessler said. Ken Libertoff, the retired executive director of the Vermont Association for Mental Health, gave strong praise to the GMCB and to the network for their leadership in addressing the issue as a health care system problem, rather than asserting that psychiatric care was too complex, or patients were too acute, and had to be left for the state to address. He then challenged both about the lack of community services. Building new inpatient capacity without addressing community support creates “the
potential of continued gridlock,” no matter how many beds are built, he said. The chief executive officer for the network, John Brumsted, MD, told Libertoff that he recognizes the inpatient bed proposal “is just one sliver” of what needs to be done. “There are many other issues that we need collaboratively to address,” he said. He said the presentation was to update the board on its analysis of “what the true statewide need is for adult inpatient psychiatry beds” as “one piece of a much bigger set of problems.” The next phase, he said, will be to determine how much of that need could be met within the project planned for CVMC. The full number of beds needed likely will not be able to be built at that location because of federal rules limiting size, Brumsted said.
During public comments, several people questioned whether the analysis had adequately considered community supports that could prevent hospitalization or enable discharges sooner. Network staff took the board through a slide presentation developed earlier in the fall that showed the steps it took to arrive at the 29-35 bed number. The report said that with those beds added, it was projected that 97 percent of the time there would be no delay for an inpatient bed when needed. Staff and consultants gathered detailed information from emergency room and admissions records at the UVM Medical Center in Burlington and CVMC in Berlin, which are both network members. They then gathered broader information from the other two general hospitals that have psychiatric units (Rutland Regional Medical Center and the Windham Center at Springfield Hospital) and from the two freestanding hospitals (the state-run Vermont Psychiatric Care Hospital in Berlin and the Brattleboro Retreat) as well as from emergency rooms around the state. The first number set was termed “beds to
reduce days,” which assessed how many days people had waited in emergency rooms before being admitted, and how many added beds would prevent those delays. That estimate was five to nine beds. They then looked at “beds for unmet need,” which was for patients who came to the emergency room and met criteria for admission but stabilized and were discharged before a bed became available. According to the presentation, the review of records showed that, overall, people in the emergency room for less than 12 hours had not needed admission, so they were not included in the count. On the other hand, a majority of those who waited more than 28 hours had met criteria for admission, so those patients were counted as having an unmet need. Among all those who waited between 12 and 28 hours before being discharged, one in five would have been admitted if a bed were available, the assessment concluded. Putting those counts together, they estimated an additional 18-20 beds were required for the “unmet need” category. Experts in health care trends were then consulted, and they projected a 4 percent increase in hospitalizations over the next 10 years, which would equal another six beds. The report noted that there were many people who waited for hours or days in the emergency room who were not assessed to need admission, and those waits would not change through the addition of hospital beds. It estimated that the new beds would reduce the number of people in a mental health crisis waiting for care in emergency rooms around the state by about 55 percent. All of the analysis for the number of additional beds assumed that nothing would change within the current system, UVM executives said. It did not look at whether need could be reduced if new community programs were developed, or whether need would increase if the expected loss of federal funding occurs for current hospital beds at the Retreat and VPCH, they said. The state has been told that an exemption is being phased out that allows them to receive funds despite being unattached to a medical hospital. Brumsted said he believed the number that was identified was very conservative, even with future steps to help decrease hospital use. “We think there are things we can do much better,” he said, but “I doubt that we will get below that number.”
The University of Vermont Health Network's 36-page slide presentation included this overview of its analysis of the number of new psychiatric inpatient beds that it said would be needed to prevent emergency room delays for hospital admission. During public comments, some people questioned whether the analysis was adequate if it did not include an assessment of the impact of adding community and peer support services on the need for hospital use.
NEWS 8 NEWS
WINTER 2018
DISABILITY RIGHTS VERMONT ANNOUNCES FY 2019 PRIORITIES
Disability Rights Vermont (DRVT) is a private non-profit agency dedicated to defending and advancing the rights of people with mental health and disability issues. We are empowered (and funded!) by the federal government to investigate abuse, neglect and serious rights violations. Our fifteen member staff teams with the six member staff of the Disability Law Project of Vermont Legal Aid (DLP) to create the cross-disability legal protection and advocacy system for Vermont. This past year DRVT and the DLP were busy defending the rights of people with disabilities both in individual case work and in systemic change. Of course we can’t list everything here that we have done this year but following are a few of our important activities. DRVT has continued our work to create a more robust community-based system that will both provide needed supports for people experiencing mental health crises and avoid involuntary treatment, incarceration or other major life disruptions that occur now because of a lack of adequate community capacity. DRVT, on behalf of people with disabilities, has brought cases before the Federal Court and the Vermont Human Rights Commissions highlighting the harm that people suffer when held in inappropriately segregated and institutional settings solely due to their disabilities. Some of these cases have resulted in important systemic changes to improve conditions for people held this way, while we continue working to fix the overall system. DRVT staff has continued to promote self-advocacy by offering training in preparing Advance Directives for health care, by assisting individuals to understand institutions’ grievance processes policies and by offering assistance to peerrun services. We have also trained staff at several psychiatric units and designated agencies in recognizing and respecting patients’ rights. We have continued our work monitoring the treatment and education of youth detained at the Woodside Rehabilitation Facility, with a focus on the use of force and segregation of youth as well as with obtaining compliance with special education laws. DRVT maintained its main focus on detecting, remedying and preventing the inadequate provision of mental health care and the unnecessary use of force and isolation against
people with disabilities in hospitals and correctional facilities throughout Vermont. This work is accomplished by DRVT staff monitoring facilities, meeting with patients and prisoners, investigating claims of abuse or neglect and assisting in filing formal grievances, complaints and litigation when necessary to vindicate people’s rights. We continue to monitor treatment environments in Vermont, including designated psychiatric hospitals, Emergency Departments, residential and community care homes. We also reach out to homeless shelters and to refugee, immigrant and other at-risk communities in Vermont. DRVT staff continued to support the right of people with disabilities to vote by conducting extensive voter registration efforts and providing polling place accessibility surveys to town officials. We have continued to grow our work assisting beneficiaries of Social Security who face barriers to employment throughout Vermont. DRVT has helped to resolve employment and educational discrimination claims, landlord tenant concerns, access to vocational services concerns, and inappropriate overpayment demands for dozens of Vermonters. Over time, DRVT has greatly expanded our work to assist victims of crimes who have disabilities throughout Vermont, including having provided training to law enforcement officers in Rutland County on how best to interact with victims of sexual assault who have disabilities, providing representation for victims as they navigate the criminal justice system, and by helping victims with access to safety and to social services they might need. DLP and DRVT staff has made real and positive differences in the lives of the many individuals who have contacted us and for whom we have provided information, referrals, short-term assistance, investigations, and litigation. DRVT is publishing our formal Fiscal Year 2019 (10/1/18 - 9/30/19) priorities for the Protection & Advocacy for Individuals with Mental Illness (PAIMI) program on the adjoining page. These priorities serve to focus the work of the agency and are developed by our Board and our advisory council, who get input from the community and staff. Your input is appreciated! We strive to do as much as we can with the resources we have and we can do that best when folks in the community let us know their greatest advocacy needs!
We need volunteers, too! Disability Rights Vermont (DRVT) is looking for volunteers to serve on our PAIMI (Protection & Advocacy for Individuals with a Mental Illness) Advisory Council (PAC). We are looking for members with connections to the broader community who will assist DRVT in developing annual priorities and assess our performance. Each applicant must identify with one of the following categories: • You are a psychiatric survivor • You are or have been a recipient of mental health services • You are a mental health professional • You are a mental health service provider • You are the parent of a minor child who has received or is receiving mental health services. • You are a family member of an individual who is or has been a recipient of mental health services • You are a lawyer If any of the above categories apply to you and you are interested in having an impact on our community we want to hear from you! Please call 1-800-834-7890 x 101 for an application to join our PAIMI council.
Send us your comments to help us stay connected to the community we serve!
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DISABILITY RIGHTS VERMONT FY’19 PAIMI PRIORITIES (PAIMI is Protection & Advocacy for Individuals with Mental Illness)
Priority 1: Investigate individual cases of abuse, neglect, and Measures of Success: serious rights violations in inpatient facilities (designated A. Outreach is conducted at a minimum of 5 community care homes (CCH), including but not limited to residential care hospitals, any state run facilities, emergency departments, homes, therapeutic community residences or licensed facilities for minors), prisons/jails, and community settings, residential childcare facilities. These visits include distribution including peer services and designated agencies. Measure of Success: A. Work on a minimum of 85 cases of abuse, neglect, or serious rights violations of people with mental health issues. Among closed cases, at least 75% of those not withdrawn by client or found to be without merit by DRVT staff should be resolved favorably. B. In at least 2 opened cases, DRVT will advocate for adequate discharge of involuntary patients in the spirit of the community integration mandate of the Americans with Disabilities Act. C. DRVT will assist at least five clients to assure they receive appropriate medication, with informed consent and without coercion, and/or alternative treatment if that is their preference. D. DRVT will assist at least two clients to overcome employment discrimination.
of DRVT literature & self-advocacy materials. B. Outreach is conducted, at a minimum, to the four state prisons housing the most PAIMI eligible prisoners. C. Outreach is conducted at all designated facilities, including any state run facility. D. DRVT literature is distributed to all of the community mental health agencies, prisons, and designated hospitals, including their emergency departments, to intensive rehabilitation residences, and to specific homeless shelters, “club houses” and peer-run services. E. Outreach is conducted at least once at each Emergency Department of non-designated hospitals. F. Outreach will be conducted to individuals labeled with a disability who are victims of crime or domestic abuse. G. DRVT PAIMI Staff will maintain and improve their cultural and linguistic competence and their trauma-informed skills and sensitivity.
Priority 2: Reduce the use of seclusion, restraint, coercion and involuntary procedures through systemic efforts. Continue systemic work to create culturally competent, trauma-informed, violence free and coercion free mental health treatment environments.
Priority 4: Advocate for self-determination and access to alternative treatment options and community integration. Use legal advocacy to enforce and expand rights across the State of Vermont.
Measures of Success: A. Work with at least two institutions to create respectful, traumainformed, violence free and coercion free mental health treatment environments. B. Conduct systemic advocacy in the legislature, and with the administration, to preserve or enhance the right of Vermonters to be free from coercion in their mental health treatment and to receive appropriate community-based services. C. Conduct systemic advocacy in the legislature, and with the administration, to preserve or enhance community-based services for people with mental health needs. D. Monitor the: quarterly statistics of the use of Tasers (Act 180 of 2014); periodic statistics on segregation in state prisons; and Certificates of Need (CONs) for Emergency Involuntary Procedures (EIPs) in inpatient settings. E. Continue to participate in the Adult Protective Services (APS) Subcommittee of the Department of Disabilities, Aging and Independent Living (DAIL) Advisory Board and actively participate on the Vulnerable Adult Fatality Review Team (VAFRT) and the Mental Health Crisis Response Commission (MHCRC).
Measure of Success: A. Conduct self-advocacy and/or advance directive trainings for 40 individuals. B. Assist at least 5 individuals across the State of Vermont with their preparation of Advanced Directives. C. Respond to opportunities to encourage the development and expansion of peer run and alternative services in Vermont’s mental health system reform and educate peers on access to these services. D. DRVT will participate in systemic efforts to improve state services for individuals in or at risk of incarceration to speed successful reintegration. E. Participate in coalition efforts to address transportation infrastructure needs of low-income people with mental health issues. F. Support the Vermont Communications Support Project (VCSP) in order to ensure that people with communications disorders related to their mental health can participate in the judicial and administrative systems. G. DRVT Staff will receive training in awareness of alternative treatment modalities available for individuals with psychiatric disabilities.
In addition, DRVT does not ignore evolving situations and other cases, or treatment facilities, which require attention.
Priority 3: Reach out to community settings, designated facilities, emergency rooms, prisons/jails, residential and therapeutic care homes. Monitor conditions and educate residents about rights and self-advocacy. Engage in systems work to improve conditions.
Case acceptance is based on these PAIMI priorities; whether a client meets the federal definition of an individual with a mental illness; whether the case can be shown to have merit; whether the client does not have other representation; and whether there are sufficient staff resources to take on the case.
How can you make your voice heard? Contact DRVT at: 141 Main Street, Suite 7, Montpelier, VT 05602 Or by phone: 1-800-834-7890 or, locally, at (802) 229-1355 By email at: info@disabilityrightsvt.org
Please visit our website at www.disabilityrightsvt.org
NEWS 10 NEWS
WINTER 2018
Pilot Proposes Services, Not ONHs
WATERBURY – A committee appointed by the legislature to review the state’s laws on court-ordered outpatient treatment voted in November to recommend a pilot project that would enhance voluntary services to people who would otherwise have been on such an order. An involuntary outpatient treatment order in Vermont is called an order of nonhospitalization and typically referred to as an ONH. Whether funding could be found for such services was unclear, but Department of Mental Health Interim Commissioner Mourning Fox said later that he was “fully in support” of the concept. The committee agreed it could not reach consensus on recommendations for actual changes to the law. Instead, the report will include summaries of all of the different proposals that were offered by members of the committee. These included a recommendation by Disability Rights Vermont, supported by a position paper drafted by Vermont Psychiatric Survivors, to abolish coerced outpatient treatment orders altogether, as some other states have done. Another proposal, made by the Vermont Department of Sheriffs and State’s Attorneys,
argued for giving authority over enforcement of ONHs issued in criminal court to the Department of Corrections. The final report had not been completed when Counterpoint went to press, but the committee voted on or agreed to the elements it would contain after reviewing a draft at its final meeting. The Department of Mental Health, represented on the committee by Director of Operations Frank Reed, indicated strong opposition to the VPS position paper, and Reed said the department would attach a statement critiquing the VPS analysis. The pilot project would identify two parts of the state where individuals would receive “augmented treatment and support services” such as outreach, vocational assistance, peer support and housing support. During the meeting, members clarified that within the pilot, individuals would not be placed on an ONH at all. “The point of this pilot … is people who would otherwise be on an ONH,” explained AJ Ruben from Disability Rights Vermont, which made the proposal along with the family member representative on the committee, Mary Cox. Sandy Steingard, MD, a Howard Center psychiatrist who was representing the
community mental health centers, said the services listed appeared to be the same as “what we are trying to do” in the current system. “Where do you see this as different?” she asked. Cox said the main thrust of the proposal was to get adequate, voluntary help funded in order to reduce the use of ONHs when a person was otherwise judged to have failed to be successful without a court order. She presented information from New York state, where such programs are in place and highly successful. In his later interview, Fox said the department has yet to go through the internal budget process for funding that will be approved for next year, but that “I would love to see it funded and funded appropriately” so that it could be successful. An ONH can be initiated in the Family Division of the courts and often occurs as a part of a discharge from an involuntary hospital stay. According to data from DMH, about 15 percent of the time an ONH is initiated by the Criminal Division, after a finding that a person who was charged with a crime is not competent to stand trial or was legally insane at the time of a crime. A second pilot that was included in the draft (Continued on page 11)
Springfield ECT Policy To Be Revised
WATERBURY – The Department of Mental Health has worked with Springfield Hospital for revisions to the policies for its new electroconvulsive therapy service, according to Mourning Fox, the interim commissioner. Counterpoint raised concerns in August about compliance with state standards. Fox said in late November that, although the revisions are not yet final, he had sent his most recent suggested edits to the hospital and it “seemed amenable to the changes.” He said the revisions addressed all of the issues identified as most problematic by
Counterpoint in September. The revised policy makes clear that ECT will be provided for adults only and that even a medical guardian for an adult who is not competent to make medical decisions requires court authority to consent over a patient’s objections, Fox said. The original policy allowed for consent to ECT by parents of a child and contemplated seeking court orders if a competent adult refused consent. The new policy also specifies that ECT provided at Springfield Hospital will use the DMH materials for informed consent and will be limited to “maintenance ECT,” meaning that
the hospital will use it only to prevent relapse with patients who had an initial series of ECT at another hospital. One patient received ECT at Springfield Hospital in October, according to information the hospital provided to DMH. Devon Green of the Vermont Association of Hospitals and Health Systems said it “has had some good conversations with Springfield Hospital and the Department of Mental Health. “We found that we all had similar positions and worked to clarify the policy accordingly. We are still waiting on a few final details.”
fully inform patients about the possibility of withdrawal effects,” the study said. A copy of the study, “A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: Are guidelines evidence-based?” can be found at prescribeddrug.org/wp-content/ uploads/2018/10/Davies-Read.pdf
antidepressants is approximately half that reported in efficacy trials.”
DRUG STUDY BRIEFS Current Guidelines Underestimate Antidepressant Withdrawal
Scientists in the United Kingdom, reviewing research comprising the experiences of around 5,000 people, “found that current guidelines vastly underestimated the likelihood of withdrawal symptoms,” according to a recent article on Care2.com. “What’s more, they miss the rate at which people would experience severe symptoms,” the article said. The abstract of the research stated that more than half (56 percent) of people who attempt to come off antidepressants experience withdrawal effects and nearly half (46 percent) of people experiencing withdrawal effects describe them as severe, lasting for several weeks or months. “We recommend that U.K. and U.S.A. guidelines on antidepressant withdrawal be urgently updated as they are clearly at variance with the evidence on the incidence, severity and duration of antidepressant withdrawal, and are probably leading to the widespread misdiagnosing of withdrawal, the consequent lengthening of antidepressant use, much unnecessary antidepressant prescribing and higher rates of antidepressant prescriptions overall,” the abstract said. “We also recommend that prescribers
Reanalysis of Study Suggests Efficacy Of Antidepressant Overestimated
A new study by researchers at Harvard Medical School reanalyzed primary outcome data from the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and concluded that antidepressant efficacy is overestimated. The study was led by Irving Kirsch, associate director of the Program in Placebo Studies, and published in Psychology of Consciousness: Theory, Research, and Practice. “Comparisons of HRSD [Hamilton Rating Scale for Depression] improvement in the STAR*D trial with improvement reported in conventional trials indicate that the improvement following antidepressant treatment is substantially lower in this highly generalizable sample than it is in conventional clinical trials,” Kirsch and his colleagues wrote. “The actual real-world effectiveness of
Two-Thirds Do Not Experience Symptom Remission on Drugs
A new study that reviewed 16 randomized trials of antipsychotic treatment of schizophrenia found that two-thirds of patients treated do not experience symptom remission “despite being treated for adequate time and with an effective dose.” The study was published in Schizophrenia Bulletin. The abstract can be found at www.ncbi. nlm.nih.gov/pubmed/29982701. “The overall percentage of no symptomatic remission was 66.9 percent” and 19.8 percent of the patients in the study did not experience any response, the abstract of the study said. “Earlier onset of illness, lower baseline severity and the antipsychotic used were significantly associated with higher nonresponse percentages,” it said. “Nonresponse and nonremission percentages were notably high. Nevertheless, the patients in our analysis could represent a negative selection since they came from short-term RCTs [randomized controlled trials] and could have been treated before study inclusion; thus, further response may not have been observed,” the abstract noted in its conclusions. “Observational studies on this important question are needed.”
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An Emphatic ‘No’ on Value of ONHs RUTLAND – The answer was an overwhelming “no” to the fall Counterpoint question asking whether involuntary outpatient treatment orders, known as ONHs, are of value to psychiatric survivors. There were 52 responses, and only three replied “yes,” for a low six percent of all votes. Ten responses came via the phone line, and 44 replies were on the Vermont Psychiatric Survivors Facebook page. One caller said that it was “an insult to even consider such an intrusion on a person’s rights to refuse treatment that is neither necessary nor wanted.” “There’s not enough beds in Vermont anyway for people to be rehospitalized simply based on not meeting the conditions of an ONH,” said another. “It’s only used to try to make people think that something may happen. For those people who I know who have been on them, I feel like it doesn’t really do anything anyway.”
None of those who responded with a “yes” gave an explanation for their view. Other comments stressed the offensive nature of involuntary outpatient commitments. “I think ONHs are a form of imprisonment and are not of benefit to psychiatric survivors,” said one. Another said, “I think that constant surveillance and coercion into unwanted psychiatric intervention are not a value to anyone.” A writer from Massachusetts – where such orders do not currently exist – apparently misunderstood the question to mean that Vermont was considering the new addition of such a law. “I am going to be terrified if anything goes down in Vermont because I’m in Massachusetts and we’re similar in our alleged ‘liberal’-ness … I reeeally don’t want any gateways to that. I mean overall, outpatient commitment is absolutely terrifying.”
The fall Counterpoint poll question was: Are involuntary commitment orders (called ONHs) of value to psychiatric survivors? 6 % “Yes.” ONHs Are of Value
94% “No.” Involuntary Outpatient Committment Orders Are Not of Value
PILOT PROPOSES SERVICES, NOT ONHs • Continued from page 10 report was rejected by the committee. It was drawn from recommendations from last year in a consulting report to DMH by the Treatment Advocacy Center, an organization from Virginia that supports the use of coerced treatment. The pilot would have increased court involvement and made it easier to return a person to the hospital if a treatment team believed they had “come to require a more restrictive treatment setting.” It would have reserved inpatient beds to ensure a bed was immediately available for those situations. “This is going in the opposite direction of a lot of the committee’s work,” said Judge Brian Grearson, who was the judiciary representative on the committee. He said that there were misconceptions in the TAC report, and that “we had concerns right from the get-go” about the data it used. In discussions of the draft prepared by DMH, the committee also agreed that the final report needed to include the full statement from VPS outlining why ONHs are counter-productive and should be eliminated. The draft described the VPS position briefly, followed by lengthy comments by DMH about why its conclusions were not valid. It also included opposition statements from the state’s attorneys’ representative. Proposals from other committee members, including the state’s attorneys, had been
summarized at length and were not subjected to any responses by DMH. Calvin Moen, the VPS representative, said its position was not represented fairly or in the same way as the other proposals. The VPS statement was presented in a “pretty cursory, brief overview,” noted another member. Reed agreed to revise the draft to include the entire statement from VPS, to remove the comments made by the state’s attorneys, and to place its own comments in a separate section. The committee, in a split vote, left in a list of “strengths” and of “weaknesses” of ONHs in Vermont, despite concerns that some were factually inaccurate and might be misunderstood. Instead of removing them, the committee’s vote requires stronger language explaining that it is simply a list of opinions by different members. The committee also discussed at some length a question about whether an ONH being considered in the Criminal Division after criminal charges have been dropped based upon findings of incompetency or insanity should be handled by the attorneys who address ONHs in the Family Division. Under current law, the terms of an ONH in those cases are debated between the state’s attorney and the public defender who handled the criminal case. In the Family Division, the state is represented by attorneys from DMH and
the client is represented by the Mental Health Law Project. A proposal by MHLP and the community mental health centers suggested that those attorneys be included as co-counsel for ONH cases in criminal court. Grearson said judges support such a change because they want to be able to hear what treatment options would be available and appropriate, which is not the expertise of the criminal attorneys. Grearson said that two years ago a bill before the legislature would have made that change in attorneys, but one group opposed it – the state’s attorneys – and the effort failed at the last moment. He urged the members of the committee to continue to advocate for the change. The study committee was established by the legislature last spring to review ONHs and recommend any changes needed to improve effectiveness. It included representatives from DMH, VPS, the mental health ombudsman, the judiciary, the community mental health centers, MHLP, the Defender General, the Department of State’s Attorneys and Sherriff’s, the Department of Public Safety, the Vermont Association of Hospitals and Health Systems, a family member appointed by NAMI Vermont and a person who has been under an ONH appointed by VPS.
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WINTER 2018
The Arts
12
Rachel Lindsay autographs a book at the launch in Burlington. (Counterpoint Photo: Anne Donahue)
A Graphic Memoir of Involuntary Hospitalization Is Making Waves BURLINGTON – Rachel Lindsay’s new graphic memoir recounting her devastating experiences with involuntary hospitalization is taking her on marketing rounds from San Francisco to Boston to New York and has been resonating with people “beyond my wildest expectations,” she says. Published by Grand Central Publishing, Rx: A Graphic Memoir, was launched before a soldout crowd at Phoenix Books in September. It is resonating with a broad swath of people “with and without mental illness” as well as clinicians, Lindsay said in an interview. She is a professional cartoonist who draws the weekly strip “Rachel Lives Here Now” for Seven Days. For the broader public, the book is “bringing people into that train wreck experience” of a manic episode, she said. Others want to come forward to share their similar experiences of what Lindsay said is a dysfunctional system. The book has caught the eye of some in the medical world as well, Lindsay said, especially in the rapidly emerging field of graphic medicine. Using comics in medical education was something that “I knew I wanted to tap into,” she said, in particular as it addresses mental illness. That connection brought her to the international graphic medicine conference hosted by White River Junction’s Center for Cartoon Studies. In the more traditional medical world, Lindsay spoke this fall to physicians at Mt. Sinai Medical Center in New York City. There, looking out at the room full of doctors, she found herself contemplating the anger at the system and the trauma she experienced that led to writing the book. “What am I going to say to these fuckers?” she said she asked herself. It became an opportunity to bring awareness
to physicians of the power dynamics that are so devastating to a person’s self-worth in the hospital. “Every aspect of the system is non-human,” she said. She has found that the clinical people she has encountered recognize the flaws, and “I haven’t ever had any pushback” from providers denying that change is needed. “But what are they going to do? They’re in the system, too,” Lindsay reflected. Yet that is what she challenges them with, she said: “What are you going to do?” The start, she believes, is recognition of the problem, and she said she is seeing that beginning to happen as an outcome of the book. The director of resident training at Mt. Sinai told her he planned to use it as part of coursework, saying, “I want this book for my residents to understand one patient’s experience.” She said she would like to see a much broader impact. For example, having it available in inpatient units would be empowering and helpful to patients, she said. The book depicts the damaging impacts of the involuntary treatment system as well as her experience of a serious manic episode. The book came out of “seven years of processing that experience,” she said. As a result of that process, her anger at the way the system treated her does not translate into a belief that her illness itself is not real or not in need of ongoing treatment, she said. “I consider my illness to be a chronic illness,” Lindsay said, and she focuses on how to manage that illness. What has been hard for her, she said, was when people who are really angry at the system say that the ways she has found to move forward in her life, including the use of medication, are simply taking “the easiest path forward” rather
than challenging things like the diagnosis itself. “It is hurtful to me” to be told that, she said. A psychiatric survivor at one conference where she spoke approached her to say, “You should consider what you’re going through as not an illness,” Lindsay said. “Everybody has an individual journey” and shouldn’t impose their experiences on others, she said. “I can’t lump myself into anybody’s little group in their reality of the world.” Lindsay said she enjoys being social, but her ability to relate to others can be impaired by illness. “I have had times when I did not have a functional reality; my perspective was not functional. It is functional if I use medication,” she said. Lindsay said she is now grappling with how to take the next steps with her book and in her life. It was her “personal imperative” to articulate what happened, but now the original driving purpose has been met. The finished product, however, is only just beginning to make the kind of impact that she now recognizes as part of its potential. Pursuing that would mean taking on a much bigger role in advocating for its message, she said. “I’m bringing a lot to the table,” she said, but public speaking and presentations have been “nonstop since the book came out,” and it is exhausting. During the question-and-answer period at her book launch in September, a member of the audience asked her, “What worked? What did you wish they had done” while “in your most extreme places?” “Listen,” Lindsay answered. “Really, really listen. See and hear my needs as something that is real.”
The Arts . 13
WINTER 2018
Book Review By ANNE DONAHUE
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he word that leaps to mind reading Rachel Lindsay’s memoir is “paradox” – because the book falls prey to stereotypes even while it attacks them. This is a book that exposes the trauma and degradation of forced hospitalization while also embracing a traditional view of an extreme state as an illness. It is scathing in its critique of the pharmaceutical empire while embracing drug treatment. It denounces the way the medical world labels people while selfimposing a medical label. Lindsay rebels against coerced treatment despite portraying herself as needing – but failing to recognize the need for – treatment, which many argue is precisely the justification for forced treatment. In sum, Lindsay’s struggle through a dysfunctional system that leads her to what she calls her ultimate act of revenge and recovery – the drawing of her book – is defused by her acceptance that her sanity needs to be maintained through the support of that system. It left me confused about her message. Yet, because her two-edged sword does not fit neatly into either the stereotype of a compliant patient who is grateful for help received or of a psychiatric survivor attacking the diagnostic labeling of human experiences, a certain truth emerges. It is that none of us has the
market cornered on what is truth and we are each entitled to the validity of our own interpretation of our experiences. Lindsay’s book uses the medium of graphics, which gives it one of its greatest strengths: It consists of stark and direct communications. The highly expressive drawings pack a punch and resonate with anyone who has been hospitalized. They portray the trite expectations that are the passport to freedom, the degradation of the way one is treated, even the sickly-sweet happy faces of some nursing staff. Those ring true, and may help to communicate what being treated that way does to a person’s sense of self and of worth. On the other hand, because of its underlying message that the author agrees that she is mentally ill, the book can also communicate a sense that, regrettably, the involuntary hospitalization needed to happen. When all is said and done, Lindsay defines herself as a person with an illness, “beholden to its cycles,” and she survives it through support from the very elements of the oppression she experienced. As she identifies this for herself, the doctors and the pills are necessary not out of fear or with resentment but out of respect for herself and her accomplishments. That appears to be unwittingly returning her to the beginning of the book, where she describes the cycle of having a life focused on the pills she needed to stay sane instead of a life fully lived. The difference between then and now for her is that in this book, this superb work of art, she identifies herself as finally, fully living. It is a line she walks, she says, “as confidently as possible.” This may be disconcerting to both those who defend medical intervention and those who see it as a tool of social control and repression, but it is her truth.
Graphics copyright 2018, all rights reserved, Rachel Lindsay
14
The Arts
WINTER 2018
Another Way Celebrates Makeover With Open House and Art Show
After completing $400,000 worth of renovations, including a sun room, new group spaces and a workout room, the Another Way peer center celebrated in November with an open house that featured member art on display on all three levels of the building. Another Way is located at 125 Barre Street in Montpelier.
Louise Wahl Memorial Writing Contest Enter the 2019 Contest: Deadline March 15, 2019 $250 in Total Prizes Awarded! 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 by email to:
counterpoint@vermontpsychiatricsurvivors.org
Include name and address.
The Arts
WINTER 2018
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15
A Yard of Trees
The poor little plants are dying; with no food, little air and sunshine. I yearn to work in the garden, and dig it up. Then, put the little plants in the ground. With love, and proper care, they will grow and come back from the grave. It is a Holy Mission.
by Jeanne G. Liveaux Middlesex
by Thomas G. Stetson Brattleboro
The Weight of a Rock The child with pigtails in her hair, Dimples on both cheeks, She ran, she jumped, she laughed, With playful childhood shrieks. She filled her days with baby dolls, Made circles on the ground,
Damaged Goods Damaged goods they usually get sent back returned for credit except when it’s a child then you can’t return it or fix the damage or get credit You did the best you could, you say well, it wasn’t enough it will never be enough so don’t ask me to pretend everything’s okay or that I love you the way you think every child should love its mother I don’t feel guilty anymore though for years I did I’m finally not responsible for your life even though you think I am Maybe that’s why I’m not a mother and never will be at least I know I can never damage a child as I was damaged Damaged goods they usually get sent back I wasn’t
by Maureen Gour Shoreham
Played marbles and jumped hopscotch squares She was a little clown. Too young right now for worries, Her innocence was flaunting, ‘Till one day the child was given, A rock to carry, not of her wanting. “This rock, it is so ugly! In my pocket it shall hide, But it really is quite heavy!” In silence the child cried. It seemed to be an enchanted rock, For blank pages her life it drew, Still everyday she carried it, And the little child grew. She wrote poems that were unfinished, Herself they might betray, Beautiful drawings and painted pictures, She carefully tucked away. She could not see their beauty, “For they were only done by me!” Alone, the rock she carried, And hoped no one could see.
Then one day looking at the rock, She saw that it was cracked, It was never magic, yet it held, The life that she had lacked. Invisible years had passed her by, Now she feared it was too late, This rock she had to bury, She could no longer bear the weight. Standing on the water’s edge, She threw with all her might, For a moment others saw her rock, ‘Till it sank out of sight. Alone she stood there crying, It was not the rock that she bereaved, But for the death of a little child, That no one else had grieved. The rock had left a mighty dent, An empty void she had to face, As an adult, those childhood years, That she could not replace.
by Judy Sayers Barre
Share Your Art!
Express Yourself in Drawing, Prose and Poetry... Counterpoint Is About Peers Sharing with Peers
Email to counterpoint@ vermontpsychiatricsurvivors.org or mail to Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701 Please include name and town
16 EDITORIAL PAGE Editorial
WINTER 2018
Opinions
What Does Hurt Us An old expression says, “What you don’t know won’t hurt you.” The opposite adage states, “Knowledge is power.” For advocates – or any people trying to protect themselves – knowledge is critical. The power of government is all-encompassing. We can fight back, but only to the extent that we know when things are going wrong. We can try to help identify solutions, but only if we know the problem. Vermont sometimes misses the boat on including the voice of survivors in discussions about the issues that affect us, but the bigger problem is when we do get included, but critical information isn’t shared. It is a bigger problem than being left out altogether because it creates a false impression that our voices are being included. The Vermont Psychiatric Care Hospital has an advisory committee, and there are survivors on it. That’s good. Hospitals that have Level 1 inpatient units are required under state law to have advisory committees. That’s good. The Department of Mental Health has a standing committee that gives input on statewide issues and includes consumers. That’s good. Last summer, there was a suicide attempt at VPCH, and the Division of Licensing and Protection cited the hospital for failing to do a full follow-up on safety measures. The hospital failed to tell the committee about the attempt. Instead, it actually told the committee later in the summer that Licensing and Protection had visited (without stating the reason) and that all was fine. If the committee had been told and allowed to give input, perhaps there would have been ideas on good – or even better – safety measures. Perhaps there would not have been a citation. Perhaps patients would be safer. Last spring, the Brattleboro Retreat, one of the state’s Level 1 hospitals, decided to lock patient bathrooms and require patients to ask staff to unlock them when needed. The new policy was never discussed in advance with the advisory committee. If the committee had been told and allowed to give input, perhaps the Retreat would have gained an understanding of how demeaning it is to have to ask to use the bathroom, and how when a person is as powerless and dehumanized as an involuntary patient is, any bit of remaining control is critical. Perhaps other means would have been found to keep patients safe. Last year, DMH authorized Springfield Hospital to begin using electroconvulsive therapy. The hospital’s policy included using ECT with children and seeking involuntary court orders for competent adults who were refusing ECT. DMH never told the statewide standing committee about the plans. If the committee had been told and allowed to give input, perhaps DMH would have learned that no hospital in Vermont had ever before been authorized to use ECT with children. DMH would have been reminded that using ECT on a person who is competent to refuse treatment violates constitutional rights. Perhaps DMH would have acted to protect Vermonters. Survivor advocates do more than fight for rights. They help agencies and hospitals and the state do better work. The more those power structures surrender their power over information and seek input, the greater the opportunity for collaboration instead of confrontation. What we don’t know can hurt us. Sharing information is sharing power, and we must demand that of the state. Otherwise, its pledges of helping to build consumer empowerment are empty promises.
Letters
Responses to Peer Support Article Yes, Peers Are at Risk To the Editor: In response to the article “Is Peer Support at Risk?” in the fall Counterpoint, here is why I believe it is at risk. As a patient who has dealt with patient advocacy within hospital/medical organizations many times, I have learned that they who are hired by the organization represent that organization. They are not looking out for the patients’ best interests but their employer’s. So how can I, if in a mental health crisis, then trust that a “peer” hired by the organization will have my best interests at heart? Then how will the “peer” assigned to the patient be chosen? Would a “peer” who struggled with addictions be sent in to see a person who struggles with PTSD? How would you know what “peer” a patient would need? Would that “peer” be given a patient’s private information? Would they take whatever is shared with them and pass it on? The whole thing about peer support is trust. Trust between peers is built over a period of time, over common factors. So just calling a person a peer does not make that person a peer – especially if they are being paid and put in a position that is “over” you and not as your equal. BONNIE L. BARROWS Bristol
Yes, But Benefits Outweigh the Risks
To the Editor: I am not a peer specialist. But it appears good things are happening in Vermont. My answer to the first question in the Counterpoint article “Is Peer Support at Risk as it Grows?” is yes. If too much energy gets diverted to discussing nuances of the subject rather than action plans, then peer-run peer support is at risk of its growth stagnating or of being “consumed” by the more powerful and organized hospitals and designated agencies. People who are being served at peer-run agencies, at the designated agencies, in the
emergency department, in the hospitals and in jails and prisons can benefit from peer support. I think peers need to accept that the different parts of the system will have different requirements or barriers to who they allow to provide peer support. Peer leadership needs to understand this and adapt a plan to work within the unique barriers of each part of the system while still maintaining the core values of peer support. Requiring a complex certification to work at Another Way is probably inappropriate, but some type of certification for a peer in a hospital could be important. Personal experience is a good foundation, but that should be developed to understand the experiences of other people. For peers working in designated agencies, EDs and in the hospitals, I think we could describe a curriculum. A recommended reading list would be a good start. For example, Judi Chamberlin’s book On Our Own would be a required read on my list. My ideal for people working as peers in designated agencies, EDs and in the hospitals would be that they had prior experience at a peerrun agency like Another Way. Can peers somehow get involved with the hiring of peers that work in designated agencies, EDs and in the hospitals? I can imagine that constraints from federal and state laws and insurance companies will be put on peers. These will need to be understood and creatively addressed. Does the system co-opt peers, or do peers coopt the system? The system will co-opt what a peer is if peers do not strategically engage with the system. If unchecked, the system will create people that they call peers. Peers need to be prepared, supported and put into the places within the system where they can help people. I think that paying peers is the right thing to do. Part of recovery is being a contributing part of the community. I don’t think that you must be paid to have your contribution recognized, but being paid for what you do is a really good way to do that. I think the benefit outweighs the risk of impacting the level playing field relationship. Being paid may also be required in order to be seen as a respected team member within the designated agencies, EDs and in the hospitals. WARD NIAL South Burlington
COMMENTARY
WINTER 2018
17
Discharge to a Shelter Is Not Adequate
This commentary is from a document provided by its author to the Brattleboro selectboard at a public hearing to discuss repeal of a “begging” ordinance – Sec. 13-2. Begging prohibited. “No person shall beg in or upon a street or other public place.”
By ROBERT A. OESER
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●
Most recently, a patient’s unit social worker admitted that there was no verification of the habitability of her intended residence and the discharge plan consisted of her calling a longerterm recovery program each Friday to determine bed availability. Her phone then became inoperable. Federal regulations already provide that all patients likely to suffer adverse health consequences upon discharge ought to be provided with adequate discharge planning. In my opinion, there needs to be a much stronger common-sense effort to “reassess
discharge plan may actually materialize is too late. By the time the patient gets to the top of a waiting list, another crisis intervenes … another emergency room visit, another readmission; more town resources are used if not wasted. Putting resources into enhanced discharge planning may not be a guarantee, but what might work, might work. As the Brattleboro Retreat is a key stakeholder in this community, it ought to play a larger part in this conversation and be a contributor to next steps, perhaps to develop a model program to better coordinate and support community services to address the types of shortcomings as those outlined in this letter.
he letter from the ACLU of Vermont that could be credited with moving this discussion forward sets forth the legal restrictions [on begging ordinances]. But there is a part two, as that letter goes on to claim: “Numerous communities have created alternatives that are more effective.” Oeser reports that the day Federal regulations already provide that A link in the letter leads to a report, before his comments to the Housing not Handouts. There, I all patients likely to suffer adverse health select board, he met with found this seemingly uncontroversial Konstantin von Krusenstiern, consequences upon discharge ought to advice: vice president of development “Prisons, jails, hospitals, mental and communications, and Kirk be provided with adequate discharge health care facilities, and foster Woodring, chief clinical officer, care systems should develop and planning. In my opinion, there needs to at the Brattleboro Retreat. implement plans for discharging that meeting, he said be a much stronger common-sense effort theAt administrators people from those institutions made the or systems of care directly into following points, among others: to “reassess [the] discharge planning housing with supportive services as ● It is permissible for necessary.” process … to ensure … responsive[ness] to patients, after discharge, to call However, in only the last few the Retreat to speak with their discharge needs” [cf. 42 CFR 482.43]. months, I stumbled across a former unit social worker for number of scenarios which seem support and guidance, but as counterproductive: [the] discharge planning process … to ensure time lapses, staff are less and less able to give ● In the beginning of May, I encountered a … responsive[ness] to discharge needs” [cf. 42 medical advice. woman lying on the steps of a building. CFR 482.43]. ● Lack of housing is no reason to stay in She had been discharged from the Retreat Common sense should dictate that immediate the hospital. On the other hand, there are some to the temporary overflow shelter, follow-up after a period of inpatient treatment is attempts to vary discharge dates to coincide which closed a few days before. A few crucial. with start dates of residential programs due weeks earlier she had been arrested for This is not to say that there aren’t “discharge to begin after discharge. The Retreat also now violating conditions not to drink alcohol. plans,” at least on paper. One patient admitted provides a funded worker at the Groundworks Representatives of several local social she had the paper … somewhere. But the days Morningside Shelter. service and non-profit organizations after discharge are crucial, and there needs to ● In the works is a research program had already tried to engage her, to no be a clearly identified “go-to” person so that the with Dartmouth to provide certain discharged avail; the only alternative offered was recently discharged person can work to resolve patients with tablet devices loaded with voluntary readmission to the Retreat. therapeutic software. The patients would need issues as they arise. ● Some months ago, I spoke with nurses Common sense should dictate that immediate to answer questions posed, and a nurse would at the Retreat who explained that follow-up after a period of inpatient treatment is follow up every day. If the patient did not discharging someone to the shelter, or crucial. respond to the questions, police could be called even to the Drop-In Center to get a tent, To wait until the programs listed on the to conduct a welfare check. is considered a “discharge plan.”
Have an Issue to Discuss with Other Survivors? COUNTERPOINT IS THE PLACE FOR YOUR VOICE. SHARE YOUR THOUGHTS HERE! If you’d like, we’ll even help you with editing to express your ideas clearly. Names may be withheld on request but must be included with letter or commentary. Please identify your town. Letters or commentaries do not represent the opinion of the publisher and may be edited for length or content. Send comments to: Counterpoint, The Service Building, 128 Merchants Row, Suite 606, Rutland, VT 05701, or to counterpoint@vermontpsychiatricsurvivors.org.
COMMENTARY 18 COMMENTARY
WINTER 2018
My Torture by Involuntary ECT By CHRIS DUBEY
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his is a true story of selfharm and psychiatric torture. I choose to have my story reprinted not only for its original value of sharing the truth about “electroconvulsive therapy” (ECT), especially forced ECT, but because I have been in contact earlier this year with some Connecticut politicians in order to have a new bill introduced. I hope republishing this article will further help with getting forced ECT abolished in my state in the coming year. *** During electroconvulsive therapy, also called electroshock or electroshock therapy, the patient is anesthetized and then an electric current is transmitted through the brain, causing a seizure that some psychiatrists believe to be therapeutic for depression and other illnesses. Nevertheless, the treatment is extremely controversial. Many patients report cognitive deficits, memory loss, and emotional trauma. I personally have communicated with many “electroshock survivors” who feel harmed by the treatment. In early November 2005, I was extremely depressed and agitated. Following a previous suicide attempt, I attempted suicide by jumping off an overpass in Middletown. I was taken to Hartford Hospital and treated for my broken legs. After recovering enough to use a wheelchair, I was transferred from the main hospital to the psychiatric facility, the Institute of Living. My stay lasted until February 17, 2006. It was the most traumatic experience of my life. While there, the staff obtained a legal order from a probate judge enabling them to legally electroshock me against my will, which they did 16 times, according to memory. The process started with the urging of my first psychiatrist at the Institute that ECT was my best treatment option, as I had tried a few psychotropics that did not work adequately. I remember one day when it seemed he was trying to provoke a response out of me. I continue to believe that some of his motivations were corrupt. Eventually, my first psychiatrist’s idea gained traction with my psychologist, the head of the Institute, and the second psychiatrist. A hearing was held by a probate judge, during which I argued against allowing the staff to involuntarily electroshock me. My brother, mother, father, and a longtime friend argued on my behalf. In the end, the judge sided with the hospital staff, apparently assuming their expertise. The treatment was abuse and torture. Each day of the
treatment, I was wheeled to the ECT Room, forced to get up on the shock table, and to allow the staff to prepare the machine and the procedure, including attaching equipment to my temples. After maybe only the first treatment, I had aches in my jaw and a headache. But emotionally, I felt extremely violated. When asked by my psychologist and the group therapy staff how the treatment felt, I remember stating, “It feels like being raped.” Some people to whom I later told that statement said it is an offensive statement, but it was my feeling at the time. I had nightmares, including one in which I was helplessly arguing against the judge. I had memory lapses, forgetting names of staff and patients. One day I screamed wildly in fear while being wheeled to the ECT Room. Another day, I actually became so disoriented after getting back in my chair after treatment that I leaned forward and fell on the floor. Later, I developed pneumonia, which I had not had since childhood.
I had nightmares, including one in which I was helplessly arguing against the judge. I had memory lapses, forgetting names of staff and patients. One day I screamed wildly in fear while being wheeled to the ECT Room. I became so desperate for a way to escape the torture that one day, in front of the nurse at the medication dispensal window, I swallowed part of a paper napkin. I knew eating before the treatment was forbidden, because of the risk of choking later. After the treatment that day, I was taken to the emergency room for abnormal breathing. In the end, I realized that I only had two options: continue my honest opposition and fighting the staff, while my memory and body seemed to get worse, or start lying about how the treatment was slowly making me feel better. I chose option two, exaggerating whatever positive effect the treatment might have had on my mood, doing it slowly to make it more
believable. I lied not only to the staff, but also to friends and family who visited. It felt horrible, but that was how fearful I was. But it worked and on February 17, I was released, keeping my dissident opinions and continuing suicidal fantasies to myself. Eventually, about a year later, I told the truth to my family. Much later, I told my outpatient therapists the truth. I started to become active in antipsychiatry, a movement to question and analyze the dogma of psychiatry and its dangerous side. I took many actions: I gave a presentation at Wesleyan University about psychiatry’s darker side, during which a psychiatrist in the audience mentioned that ECT was performed at the Institute of Living "about 50 times a week." I worked with the Citizens Commission on Human Rights to send a letter to the probate judges of our state. (For record, CCHR is affiliated with Scientology, although I am not.) I was among probably hundreds of consumers and other people who replied to an FDA panel’s request for input about a proposed reclassification of ECT machines to a lower risk status. The machines previously had been grandfathered in without the need for scientific proof of efficacy and safety. The panel, receiving overwhelming opposition, chose not to reclassify the machines. To this day, I continue to have excruciating memories of the legally sanctioned abuse done to me at the Institute of Living. Rarely a day goes by without the trauma passing through my mind. I have learned effectual coping strategies and I use different medication, but the trauma remains a constant memory. It may be true that the treatment kept me alive, but the means to that end was torture. I believe somewhere there was a better alternative. I believe in the maxim of autonomy in medical ethics, which states, “The will of the patient is supreme.” I believe psychiatric patients should never be forced to undergo electroshock against will. Christopher James Dubey is the author of the technothriller Assignment Yggdrasil. He possesses a B.A. in English and philosophy and an A.S. in biotechnology. He won many academic awards in college, including awards in creative writing and philosophy. He was the sole winner of his school’s 2009 Annual Award for Academic Excellence in Biotechnology. He has written biology articles and book reviews for Examiner.com, and book reviews for IndieReader.com.
Editor’s note: Under Vermont law, a probate court has the authority to allow a guardian to consent to involuntary ECT if the person under guardianship is found to lack capacity to make a medical decision. Vermont does not track data on whether or how often such orders are issued.
COMMENTARY COMMENTARY. .
WINTER 2018
19
Advocacy Is Impossible By CALVIN MOEN
I
have been representing V e r m o n t Psychiatric Survivors on a legislative study committee looking at orders of nonhospitalization, or ONHs – Vermont’s involuntary outpatient commitment laws. In simple terms, it’s a court order that says a person has to follow certain conditions – often reporting to a case manager, seeing a psychiatrist, taking prescribed drugs, and/or living in agencyapproved housing – otherwise they can be called into court and potentially hospitalized. Serving on this committee has been one of the most emotionally challenging experiences I’ve had in my job, and there have been plenty of those. Why emotionally challenging? It’s not often I’m tasked with sitting in a room among people with a wide range of views about the basic human rights of autonomy and cognitive liberty, and rationally discussing with them the “strengths” and “weaknesses” of a paternalistic system that seeks to monitor and control people’s minds and bodies. The rationale behind this control is ignorant and hateful. It assumes that, without the “treatment” prescribed by a clinician, a person’s life will crumble and take down everyone around them. There is no room for informed consent, for the dignity of risk, for personal agency. This is the kind of thinking I’m supposed to be debating with. The first meeting I attended, I didn’t even speak. I’m ashamed to admit it, but it’s true. From one moment to the next, either the conversation was so bogged down with legalistic details that I didn’t have anything to contribute, or I was so angry at what I was hearing that I was speechless. One member of the committee, a judge, kept using an anecdote involving a fictitious “Aunt Suzie,” whose family members all know that when she begins wearing her purple sweater and eating cat food, her condition is deteriorating, and she needs to be brought back into compliance with her treatment plan. They know that before long, she will be needlessly calling the police, or assaulting people. (These family members, evidently, have the ability to predict future behavior, something that clinicians, with decades of research and fancy measurement tools, cannot do.) The first time I heard about Aunt Suzie, I felt my heart leap out of my chest, my hands began to shake, and all I wanted to do was find Suzie and tell her to wear eight purple sweaters if she wanted to, and bring her a case of her favorite cat food. I wanted to station myself outside her apartment with a baseball bat to ward off anyone who tried to come and haul her into court and make her take harmful neuroleptic drugs she didn’t want. I wanted to scream, and I wanted to sob. But I sat still and said nothing. I wasn’t going to ruin it for everyone by being unprofessional. Honestly, I wasn’t afraid for my own safety.
Sure, I was in a conference room at the state office in Waterbury, in a locked building where I needed to show ID at a security desk and get a temporary badge to gain entry, a building that houses government agencies with the power to alter the course of hundreds of lives, on the campus of the former state hospital, which closed right before I moved to Vermont but which has a reputation for being a horrible facility. But I’m able to pass as “sane.” The form my madness takes most often is silence, despair, surrender. I winter into a deep hole that my screams could never escape. I detach from myself and my surroundings and burn up from the inside, the smoke and flames kept carefully from view. I haven’t been subjected to the kinds of force and surveillance that my friends and colleagues have. To the extent that voluntary hospitalization is possible on a locked unit where no one leaves without permission from the psychiatrist, I was voluntarily hospitalized. To the extent that voluntarily taking psych drugs is possible while being lied to about their risks and benefits, I have taken psych drugs voluntarily. I have never been held down, strapped down, forcibly injected, or stuffed in a “quiet room.” I have never been legally committed, either inpatient or outpatient. These are all things I’m afraid of, but I am at pretty low risk for them actually happening. I’m relatively very privileged in this way.
How is it possible to liberate ourselves from structures that harm us while actively trying to survive that harm? The threat of an ONH is not personal to me, and yet I take it personally. I am closely identified with my comrades who have been subject to force and coercion in greater measures than I have. I know how hard I have struggled against paternalism for mind and body autonomy, how much I have lost and how much is still at stake. How much more terrifying, then, how much more excruciating is it for someone who has been – or still is – wriggling in the clutches of this oppressive system to enter a conference room and argue this or that point with nuance and grace? How is it possible to liberate ourselves from structures that harm us while actively trying to survive that harm? Those of us doing advocacy within the psychiatric and/or legal system do the impossible every day. We go into locked units and have impossible conversations with psychiatrists who are often rude, dismissive, and dishonest. We give impossible presentations and trainings, laying bare our most painful experiences for clinicians, law enforcement, researchers, and others with keys, guns,
prescription pads, and more power than us (and often bigger salaries) who deny our expertise, derail the conversation, or slump in their chairs looking angry. We give impossible testimony to the legislature, hoping that our personal stories backed by careful research will outweigh the input of lobbyists we can’t afford. We write impossible letters to administrators, asking them to undo decisions that have already been sealed with a handshake at a meeting we weren’t invited to. We do it until we can’t anymore. I realize that all of this might sound really discouraging to anyone who’s doing or thinking about getting into this type of advocacy, and I don’t want to discourage anyone. I think it is necessary work, or I wouldn’t be doing it. But I doubt that advocacy alone has ever resulted in significant change. I do think that systems advocacy in conjunction with nonviolent direct action, cultural work, militant disruption, constructive alternatives, education initiatives, and mutual aid programs can bring about liberation. The gains that our movement has achieved have been through a multitude of approaches, through attacking from all sides. That’s a lot of organizing! And there are so few of us doing it, and so many of us are struggling just to show up every day, just to get out of bed, get out of the ER, stay housed, stay focused, resolve conflicts with each other, take care of each other, stay alive. One thing that might make it possible for more of us to do more of this work is to increase support infrastructure like community centers and peer-operated respites. The more access we have to safe spaces and supportive community, the more capacity and resiliency we will have to keep fighting. I know that I have been able to attend these meetings, give these presentations, do these trainings, and write these letters in part because I have not had to do it alone. Whether I had a coworker by my side or was able to debrief with a friend or get validation from colleagues online, some kind of support made the impossible possible. I can do this work, too, because I know that others around the state and country – maybe including you, reading this now – are filing lawsuits, marching with signs, holding organizing meetings, visiting one another in the hospital, playing punk music, doing childcare and pet care, printing pamphlets, trolling Facebook groups, organizing conferences, writing news stories, making films and memes, and so much more. So I go back and scream into the void, again and again, and sometimes the void screams back, but it doesn’t swallow me up. Because my community holds onto me. Because one legislative meeting is just a drop of water in a huge wave that is eroding the immovable mountains of oppression, bit by bit.
Calvin Moen is the training director for Vermont Psychiatric Survivors and does grassroots organizing for mutual support in Brattleboro.
COMMENTARY 20 COMMENTARY
WINTER 2018
We Have Viable Alternatives To Psychiatric Force and Coercion By KAZ DEWOLFE
I
was getting burned out as a patient representative visiting the Brattleboro Retreat last winter. I found my conversations with patients to be mostly rewarding and mutually beneficial, but all of my attempts to seek accountability and positive change on the units were met with steep resistance, excuses, paternalism and so much sanist rhetoric. I helped patients file grievances alleging abuse and mistreatment, and they would often be ignored or responded to with victim-blaming, gaslighting, and denial. I sometimes felt like hitting my head against the wall would have been more productive. In addition to the lack of progress and lack of accountability, every time I visited the hospital, staff on the units would joke about not letting me leave. They thought this was funny. They were laughing at an experience I have lived through that was deeply traumatic and deeply painful. I found it to be extremely damaging to my overall wellbeing to continuously be entering a facility that was openly hostile and unapologetically violent towards mad and neurodivergent people such as myself. In a move for self-preservation, I stopped visiting the units and decided to pursue activism more in my private life and switch to writing, design and social media outreach in my professional work with Vermont Psychiatric Survivors. I continued to serve on the Retreat’s Consumer Advisory Council, which is at least partially made up of survivors of hospitalization. I thought this was one avenue in which I could safely participate in hospital advocacy. During a meeting of the CAC in August of this year, we learned that the Retreat was planning to accept a $5 million grant to build a new temporary unit, with 12 new involuntary beds. The state is allocating these funds in an attempt to address long emergency department wait times. My coworker on the council asked to clarify this point. We know based on research that VPS conducted last year, that the majority of people held in emergency rooms walk in voluntarily seeking help. Adding more involuntary beds will not address the lack of community resources that lead people to end up in the ED. We also know based on our research that 75 percent of holds studied were of homeless individuals. We need more housing, not more psych hospital beds. In that CAC meeting, what was equally as disturbing as this poorly justified expansion of forced confinement was a brief mention of tentative plans to eventually turn the new space into a secure residential facility for adolescents. In other words, long term institutionalization for disabled youth. I was horrified by every word that was spoken. My hands shook. The space in that room seemed suddenly solid, heavy, and to be suffocating me. I had to fight the space itself and my own body
just to speak up and have my truth be heard. “Please stop torturing people.” I think I said something along these lines. I asked that the Retreat truly act in the best interest of its patients and work towards an end to involuntary commitment. One of the CAC members at this point said something to the effect of, “We can’t just let the severely mentally ill be free to repeatedly victimize people.” I swore. I realize that was unprofessional of me. I could not at that moment bear this insult, when people with psych labels are 12 times more likely to be the victims of assault than the general public. Despite being no more likely to commit violent crime, we’re still routinely blamed for mass shootings. I’d seen firsthand so much suffering and abuse inflicted on mad people in my community as well as in treatment settings. I couldn’t bare this sanism at that moment, and I swore.
“Please stop torturing people.” I think I said something along these lines. I asked that the Retreat truly act in the best interest of its patients and work towards an end to involuntary commitment. My coworkers and I drafted a letter to the CEO of the Retreat, Louis Josephson, asking that he act in the interest of the population the Retreat serves by refusing the grant and instead advocate for the expansion of community-based services and peer respite. We recently received a letter back asserting that the new unit is only a temporary effort to address an urgent need in the state. There is a viable and affordable way to meet many of our actual needs for safety and support in our communities. We need more peer-run respite centers. Peer-operated crisis respites provide better outcomes than hospital stays. They could be developed rapidly using existing peer-run networks, cost far less than inpatient care, and further Vermont’s goal of developing its peer support workforce, as written in Act 79 of 2012. Vermont currently has only one peer-based crisis respite with two beds, Alyssum, which serves 50 individuals per year and turns away more than half that many because those beds are occupied. Many individuals across the state have not been able to access this resource because they lack transportation to its remote, low-population location. My Brattleboro-based coworkers and I recently drafted a proposal that the state fund the creation of six peer-operated crisis respite and community centers with two beds
each, to be located in communities throughout the state where they are needed most and can be accessed most easily. These centers would operate as hospital diversion, step-down for folks leaving the hospital, and a resource to people in the community just looking for support but not respite. We project that this network of peer respites would be able to supply up to 624 individuals with short-term respite, and many more will be able to access peer support through the community centers. We can likely prevent the majority of crises that lead people to seeking help at the emergency department. We can prevent those folks getting put on involuntary holds and getting committed to psych hospitals. This would also likely open up more resources and beds within the hospital system for those who are truly seeking that level of care. Right now we have a mental health system that holds people against their will and forces psychiatric interventions on unconsenting individuals all while repeatedly turning away folks consenting to intensive psychiatric treatment. These are two sides to the same paternalistic coin, and are both symptomatic of an utter lack of community resources. We can actually take steps towards an abolition of psychiatric force and coercion. And doing so would cost the state less than perpetuating and expanding the current coercive system. I sometimes imagine how things could have been different when I was working as a patient representative. What if there had been an entire community of peer support workers in Vermont and voluntary beds in noncoercive settings ready for those people who needed to get out? What if I could have just made a phone call and then given folks a ride to a local respite house? What if involuntary holds were so rare that I didn’t feel overwhelmed looking at my list of folks to check in with every morning? What if nearly everyone on the units had requested to be there? And what if I felt secure in the knowledge that there was a safe place for me to go to and get support if frequent exposure to paternalism and sanism drove me to more distress than I could manage on my own? Funding peer respites rather than expanding a system that can be so damaging is necessary, affordable and long overdue. Kaz DeWolfe is the communications coordinator for Vermont Psychiatric Survivors and the coeditor of Radical Abolitionist, a Cognitive Liberty Blogspace.
COMMENTARY .
WINTER 2018
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Rethinking Bipolar Diagnoses By SARAH KNUTSON
M
y current diagnosis is “Bipolar I Disorder.” In a few years, that likely won’t exist. I might even be able to sue my clinician for not assessing – or ruling out – known biological markers of stress that overlap with conventional diagnostic features. For a variety of complicated reasons, some of us develop an overactive stress baseline (sympathetic/fight-or-flight response) early on in life. Across numerous species, major earlylife stressors produce both kids and adults with elevated levels of glucocorticoids and hyperactivity of the sympathetic nervous system. Basal glucocorticoid levels are elevated – the stress response is always somewhat activated – and there is delayed recovery back to baseline after a stressor. Studies have shown how early-life stress permanently blunts the ability of the brain to rein in glucocorticoid secretion. A simple way of thinking about this is that a lot of us start our lives in “high idle” mode. The engine is always a little too revved and running a bit fast for its own good. Plus, it’s harder than usual to calm it down. This puts added wear and tear on the system, and that begins to show over the years. Human beings are incredibly diverse in our life circumstances, experiences, interests and gifts. Each of us constructs a response to the challenges we face based on what we have to work with (personally, socially, environmentally) at the time. With time and repetition, some responses start to come more naturally than others. They start to feel like the essence of “me.” That’s the beauty and diversity of life. It potentially gives us a lot to learn from each other.
So what’s going on with “mania”?
As it turns out, the human stress response (sympathetic/fight-flight) doesn’t get turned on only by fear, like if I’m being chased by a bear. It also turns on if I am the bear and chasing you. The human stress/survival response developed to help us survive – both as individuals and as a species. Our survival is not just about getting away from threats as fast as we can. Survival also requires us to be alert and on the ball for potential opportunities. It’s not enough to just know there’s an opportunity. A lot of opportunities are there for only a moment. Like classic cat and mouse, you have to gear up and go after it before it gets away. Think of bargain shopping at Walmart on Black Friday. I have to be able to mobilize really quickly if I’m going to snatch up that hot deal on a big-screen TV. Fortunately, the survival response is there for me. It’s all over the stuff that matters to human beings the most, thereby enabling me to outhustle or out-wrestle the next guy who is all over the same Walmart bargain that I am. Physiology of “mania”: symptom by symptom So now let’s take a look at so-called “mania.” We’ll go through the criteria for a manic episode symptom by symptom so you can see how the stress response is potentially operating here.
DSM 5, Criteria A
A distinct period of abnormally and persistently elevated, expansive, or irritable mood and abnormally and persistently increased goal-directed activity or energy, lasting at least one week and present most of the day, nearly every day (or any duration if hospitalization is necessary). To really see what’s going on, let’s go back to that Walmart bargain and take a look at what is happening physically and mentally. First of all, an opportunity like this doesn’t come every day. In all likelihood, I’m gonna get something I desperately want at a price I can finally afford. But there’s a catch: I get the bargain if and only if the item I want is still on the shelf – which requires me to activate like crazy to beat out the next guy. So, is my mood expansive or elevated? You bet. It’s the chance of a year, and I might get it. Am I going to get potentially irritated? Well, if anything cuts me off or gets in my way, you bet. Is my energy increased? You bet. I have to make a dash for it. Am I goal-directed? You bet. That’s the whole purpose. Does it last a week? Probably not, because it’s a one-day sale. But it could. Like if I had to compete with the other customers in a survivor show for the chance to get the best deal, and that competition went on for a week or a month.
7. I feel no pain. Literally. Endorphins, my body’s natural opioids, are in full gear now, again making sure that nothing distracts me from the task at hand. 8. It gets even better. The fact that I’m pursuing a highly meaningful personal goal is giving me massive hits of dopamine, which is essentially endogenous cocaine. In other words, I’m getting encouraged and reinforced by my body’s own reward system.
Criteria B
During the period of mood disturbance and increased energy or activity, three (or more) of the following symptoms (four if the mood is only irritable) are present to a significant degree and represent a noticeable change from usual behavior: 1. Inflated self-esteem or grandiosity. Am I feeling pretty powerful here? You bet. My muscles are pumped. I’m feeling no pain. I’m getting massive internal rewards. Endogenous cocaine is telling me I’m doing great. Any outside feedback that could discourage me is being shut out. 2. Decreased need for sleep (e.g., feels rested after only 3 hours of sleep). Let’s be honest. Is there any chance in hell my body is going to let me sleep in these circumstances? 3. More talkative than usual or pressure to keep talking. Yep, for sure. If I care about you or you care about me, you bet Think of bargain shopping I’m talking. I want you to know about it. I’m also going to make sure you have all at Walmart on Black Friday. the information you need to help this plan succeed. 4. Flights of ideas or subjective experience that thoughts are racing. You bet. There’s so much to figure out and so many angles to anticipate. All possibilities must be considered. 5. Distractability (i.e., attention too easily drawn to unimportant or irrelevant external stimuli), as reported or observed. Frankly, I might never feel this good again. I’m ID 17205468 © Valariej | Dreamstime.com on a roll and I better take advantage of this energy while it’s here. I need to And, just the same as if I was in a war zone make sure that I get everything I can and had to stay in high alert, my body would possibly get while the universe is being likely rise to the occasion for as long as I needed this generous to me and making me feel it to in order to protect my interests as much as this amazingly great. Yes, I know you possible. Before we move on to Criteria B, you might think you have important things have to understand a bit more about the fightto say to me. But that can wait. This is a or-flight response and how it actually affects us. once-in-a-lifetime opportunity. When I’m chasing the opportunity of a lifetime, 6. Increase in goal-directed activity (either this is what my body does: socially, at work or school, or sexually) or 1. Adrenaline surges. My heart pounds, psychomotor agitation (i.e., purposeless lungs pump and blood pressure amps in non-goal-directed activity). Yep. This is service of getting as much fuel and oxygen here for sure. to my muscles as possible. 7. Excessive involvement in activities 2. My fists clench, my legs get ready to run, that have a high potential for painful I’m primed and ready to pounce. consequences (e.g., engaging in 3. My digestion shuts down. unrestrained buying sprees, sexual 4. Higher-order thinking (judgment) gets indiscretions, or foolish business put on hold. That takes energy that my investments). Exactly. This is where the muscles need to move me. It also takes survival response is really so deadly. wayyyyy too long. I can’t afford to get The whole purpose of the survival response is bogged down in details. to facilitate quick action and fast resolution. So 5. With judgment out of the way, out come it’s basically telling me that everything is urgent the fast reflexes and old habits. The autonomic system takes over behind and to run, run, run. Because, after all, this is the the scenes and starts calling the plays. opportunity of a lifetime. In these circumstances, my better judgment Whatever it is that I do best and know really doesn’t have a chance. It’s underbest – whatever comes most naturally – is resourced at the same time that my body is what that system goes with. 6. Next come the tunnel vision and the primed for action and my old habits are given a tunnel hearing to shut out all the outside free reign. There’s also very little chance of any distractions, allowing me to hyper-focus outside feedback getting past the firewall that and totally zoom in on my vision of what I is being patrolled by the high-intensity tunnel want to happen. (Continued on on page 22)
22 COMMENTARY
WINTER 2018
Documenting Hospital Trauma By PHOEBE SPARROW WAGNER In May 2014, mute and psychotic, I was taken to the emergency department of Connecticut’s New Britain General Hospital, also known as Hospital of Central Connecticut. More than a couple of years have passed since then, so instead of relying on memory, I will use what I wrote shortly afterwards. Some of this has been taken from the secret journal I kept in that hospital, a journal that I was forced to scribble on pieces of torn-up brown paper waste-basket liners, surreptitiously mailing them to a friend the moment I finished writing. I had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including my mail, each time they found a reason to seclude me, which was nearly every day, and sometimes more than once a day. But before I was admitted, I came into the emergency department by ambulance, having been given the “either the easy way or the hard way” choice by the police. I did not resist or fight, nor was I restrained in any way in the ambulance. I was mute, which had deeply concerned my visiting nurse, and I was mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear psychiatric advance directive. On this document was vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute. Even though I spent many hours on it, psychiatric advance directives are virtually worthless in the state of Connecticut, and doctors can and do ignore them freely. Much as Vermont doctors do. The first ED nurse’s note reported that “patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, ‘Sunglasses block hate. I don’t want to hurt anybody.’” (Sunglasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point,
and I was mute with no way to communicate the distinction.) “On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded ‘yes’ when asked if she was hearing voices but refused to answer other questions.” At 15:19 another nurse wrote: “Patient not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then patient picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get patient to communicate. Patient pulled sheets over her head. Patient still in street clothes, will patient [sic] as is until examined by MD.” What is not said here is that this nurse never asked me whether she might look at my art book. She just took it. She refused to allow me any other means of communication besides speech. When I was unable to obey her, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else why this was so. If she had provided me with means to write, I might have been able to tell her what had happened in the previous two weeks at home. Instead, she appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred. I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so. The RN then recorded what happened after a meal was given to me that I did not eat, as it was not vegetarian. “Patient ate nothing [but she] wrote messages with ketchup and French fries, [saying] ‘I need a crayon.’ This nurse told patient she needs to speak because she can, patient threw everything on her table on the floor, food juice, etc. Patient then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the observation area.”
“Patient went to the bathroom, seen coming from the BR with paper towels then observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse go up to check and patient found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM patient threw at this nurse. “Pt moved to room 42 [seclusion] then patient got out of bed and snuck around corner and tried to attack this nurse from behind. Patient to be medicated and restrained. Patient licking feces off fingers, would not let nurse wash her hands.” In point of fact, I never attacked or even tried to attack her or anyone else. The timeline written in the chart does not even make sense. What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that, too, was taken away from me, and the nurse came up to me and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand. So, I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels. This did not go over very well with the nurse or anyone else. But I never attacked her or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did. I was so furious that without even a thought as to possible consequences, I raced up behind her to get my book back. That was all. I never assaulted her, I never so much as touched her. She suggested as much when she (Continued on page 23)
RETHINKING BIPOLAR • Continued from page 21 vision/tunnel hearing hyper-focus system that is keen to insure that 100 percent of my attention is focused on pursuing this reward. So that about does it. Dispensed with all the symptoms of so-called genetic, chemically imbalanced “mania” armed only with the little ole garden-variety human stress response that happens for millions of Americans every Thanksgiving. If you’ve been following me so far and relating it to your own experience, then quite possibly you’re beginning to see how all of this might come together to create the “perfect storm” that gets labelled a “manic episode.” But what about that inevitable crash that comes after the so-called “mania”? Where does that come from? The survival response runs on borrowed time and energy. It requires sacrifice from all sorts of other bodily systems. At the time, I have no idea this is happening. The adrenaline, the power surge, the dopamine hits, the pain killers, the hyper-focus frame of mind all converge to keep me chasing short-term gains. Once I come back to earth, however, it’s payback time. There’s a boatload of refueling, replenishing and damage repair that has to be done – at the very least in my own body, quite possibly in my life as well.
Let’s talk biomarkers
Hopefully by now you can see how most if not
all of the so-called “bipolar” symptoms connect to the human stress (survival) response. The even better news is that there is a way to test to see if this is what’s happening. There are numerous biomarkers for these kinds of stress states: blood pressure, blood sugar and oxygen levels, blood and saliva tests for hormones (e.g., adrenaline, glucocorticoids), skin conductivity tests, muscle tension or twitching, frequency of movement, whether fine motor or large motor movements are more prevalent, pupil dilation, whether visual perception is biased toward detail or gross impressions, brain scans to see what neural pathways are “hot” or “cold” … the list goes on.
Why this matters
Let’s suppose you tell me that the wreckage I create in a “bipolar” state of mind is due to a genetic or disease condition that renders my brain structurally defective. If that’s the case, then any hope I have of effective treatment is logically the purview of brain scientists, doctors and surgeons. My major role is to pray that they figure out a cure and soon. On the other hand, suppose that what’s really driving my so-called ‘mania’ is that my stress/ survival response is firing wildly. Then the solution is a lot more within the realm of something I can work with. Yes, I have some learning to do. I need to understand the
basics of how the survival system operates. I need to learn what turns it on – and even more importantly, what turns it off. But if I have that basic knowledge (which the average person can be taught in a few hours), then I have a tremendous amount I can work with through my own observation and trial and error. This article is condensation of the first section of a longer piece by Knutson that got 6,000 hits in a week on Mad in America. The full piece can be accessed at www.madinamerica.com/ 2018/04/how-the-human-stress-responseexplains-away-bipolar-disorder. The second section – learning to address what turns the survival system on and off – will be printed in the next issue of Counterpoint. Sarah Knutson is an ex-lawyer, extherapist, survivor-activist from Plainfield. She is an organizer/blogger for Peerly Human (peerlyhuman.blogspot.com) and the Wellness & Recovery Human Rights Campaign. Sarah organizes free, peer-run, peer-funded opportunities for ordinary people to offer, receive, share and experience the radically transformative power of unconditional personhood and our own authentic, vulnerable humanity.
COMMENTARY COMMENTARY ..
WINTER 2018
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DOCUMENTING HOSPITAL TRAUMA • Continued from page 22 wrote, elsewhere in my chart, “Public safety was able to get to patient first.” The two guards, holding me down in room 42, decided they wanted an excuse to four-point me, and though one of them cautioned that they had no reason to do so, the other one told him not to worry, “We’ll find a reason.” Later I learned that they had invented my attacking a nurse as justification. The admitting doctor never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional” – a “borderline.” He had already conceived an intense antipathy towards me, so by the time he came by to see me on the W-1 psych unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. I was to be admitted on the basis of his judgments from a single evaluation during which I could not communicate in any fashion, from which evaluation he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.” He spoke to no one in my family nor my longtime nurse or doctor nor my friends – and he did not even hear from me, yet he drew the snap conclusion that I had a personality disorder? On what basis? How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular justified his not allowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to punitive ministrations. Did he think I would respond positively? But there are hospital policies that hurt everyone, not just me. I want to explain what “deserving” seclusion or restraints and being “violent” at the New Britain hospital meant in 2014. I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital says something like, “We only use seclusion or fourpoint restraints when absolutely essential, when a patient is extremely violent, and cannot be controlled in any other way.” Trust me, I know. They said this sort of thing to me in every hospital since 1985, including hospitals in Vermont. But what you need to know is that they are not talking about some 400-pound man hopped up on PCP, waving a machete. No, they are talking about someone like me. So, let me tell you about me. I turned 62 years of age in November of 2014. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed maybe 108 pounds on a good day. I have been consistently described as “poorly muscled.” Not only was my right shoulder injured by staff encounters at New Britain’s general hospital but I before I was hospitalized there I was unable to use my left arm for much of anything. Okay, so am I truly violent? What did I do to deserve hospital brutality? Or should we say, their “protective measures”? This same doctor, director of psychiatry there, wrote of me that “while in seclusion or restraints patient would often scream.”
The doctor further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any other possible mode of communication and when I could not utter a word, he peremptorily walked out on me. He noted that, yes, I threw my bed-clothes at him, but failed to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up abruptly, turned on his heels and left. I admit that having already been secluded, four-point restrained and forcibly sedated in the ED, and then called a liar when I denied that
by Phoebe Sparrow Wagner I had ever assaulted the nurse, I was upset at being unable to make him stay or attend to me. So, I did the only thing I could do to make noise. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder. His reaction was itself swift and violent in the extreme, and extremely personal. Enraged, his face went beet-red. “Seclusion! Seclusion! Restraints! Restraints!” he bellowed. Before I could assent to walk there, I was bodily dragged down the hall by my injured shoulders to one of the most horrifying seclusion cells I have ever seen. There were two, each locked from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling. They shoved me inside, locked the door and the outer door, then walked away. I urinated on the floor in my panic. I took off my clothes. Wordlessly, I screamed, wanting someone to talk to me. I wanted warm, dry clothing to wear, but there was no response. I did what I had to. I knew what would happen, but I was freezing with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate it. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they were keeping me there. It might be two hours or 20, or it might be three days. I took the johnnie I had removed and rolled it into a rope and tied it around my neck. I didn’t want to die. I just wanted someone to come in to check on me. Then finally I would be able to beg for a blanket. The intercom did crackle to life eventually, and someone spoke. “Take that away from your neck. Now.” Still mute, I gestured to indicate I was freezing: “I need something for warmth!” But this was a battle I was destined to lose. Eventually, but not so quickly as to show that they had serious concerns about my safety, guards and nurses entered the room, bringing a gurney. Grabbing me, they hoisted me onto it and without even covering my nude body, they
locked me into leather restraint cuffs, in a spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts, and that was all. I was summarily injected with three punishment drugs ,and an aide was positioned at the door. Then the goon squad trooped out. I howled in wordless rage. The aide just looked away. Exhausted, I finally quieted and I tried to signal my desperate need for water and for warmth. Even when the aide finally acknowledged my requests, which I mimed with difficulty from the restraints, she stated that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty. So I would get nothing. The experience of being shackled to a bed in four-point restraints or being isolated by force in a freezing seclusion cell is universally terrifying. Nevertheless, both such a cell and/or four-point restraints are quickly employed to curb “undesirable behaviors” at New Britain General Hospital. Staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. Male guards stripped me naked “for safety’s sake,” and even though I put up no resistance, the same guards four-pointed me, separating my limbs into a wide-spread-eagled position – a visual rape they clearly enjoyed – then they shackled my arms above my head and my ankles open wide. I did not resist. I did not say a word. But they put their hands around my neck and squeezed tight while the nurse injected me in the buttocks. Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hourvideotaped bedroom and smear feces on the wall? Yet the esteemed director of W-1, the general psychiatry unit at New Britain General Hospital, claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contended. He simply never got the connection between my horrendous decompensation and his so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either. I moved 150 miles away to a different state shortly after being released. My concern is for the people who are still being tortured on that unit. I did not leave my home of 60 years just to forget about this. Justice must be served in order for change to happen. It is often claimed that we long ago left behind the days when psychiatric patients were stripped and beaten with a birch rod as “treatment,” but after what happened to me from the 1980s to 2016, all I can say is to that is: Have we? Have we really? Phoebe Sparrow Wagner is an awardwinning poet, author and artist whose newest book of poetry and art, Learning To See in Three Dimensions (Green Writers Press/ Sundog Poetry Center 2017) is also now available at Amazon and other booksellers. Wagner’s art was on display in Connecticut area libraries in 2011 and 2012 and in Vermont, in Brattleboro, in 2016 and 2017. She currently lives in Vermont.
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 jerome5@yahoo.com 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: info@hivemutualsupport.net www.hivemutualsupport.net 802-43-BUZZ-3 (802-432-8993)
CRISIS RESPITE
Alyssum, 802-767-6000; www.alyssum.org; information@alyssum.org
VERMONT PSYCHIATRIC SURVIVORS OUTREACH AND PATIENT REPRESENTATIVES 802-775-6834 F: (802) 775-6823 info@vermontpsychiatricsurvivors.org
HOSPITALIZATION ALTERNATIVE
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; info@anotherwayvt.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; tpccvbarre@gmail.com
BENNINGTON, Turning Point Center, 465 Main St; 802442-9700; turningpointbennington@comcast.net BRATTLEBORO, Turning Point Center of Windham County, 39 Elm St.; 802-257-5600; tpwc.1@hotmail.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; recovery@ncvrc.com
RUTLAND, Turning Point Center, 141 State St; 802-7736010 turningpointcenterrutland@yahoo.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; tpfcdirection@gmail.com
WINTER 2018
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: support1@biavt.org; 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.
Samaritans Hotline
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; info@namivt.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 Counseling 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: counterpoint@vermontpsychiatricsurvivors.org Veterans’ Services
Vermont Veterans Outreach
WWW.VERMONTVETERANSSERVICES.ORG
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
Homeless?
Vermont Veterans Services (VVS) program for homeless veterans with very low income, call 802-656-3232.
ST. JOHNSBURY, Kingdom Recovery Center, 297 Sum-
www.MakeTheConnection.net
WHITE RIVER JUNCTION, Upper Valley Turning Point, 200 Olcott Dr; 802-295-5206; mhelijas@secondwindfound.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; c.boyd@stjkrc.org; 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