National Call to Action: Eliminating the Use of Seclusion and Restraint

May 5 Washington DC

Sylvia Caras. PhD

250 seats, perhaps half filled at the start (and end)

Familar faces:, looking around the room: Jacki McKinney, Paolo, Maria Maceira, Jean Campbell, Brian Coopper, Judi Chamberlin, Howard Trachtman, May Ann Beall, Alexandria, Joe Rogers, Meghan Stanton, Jean Campbell, Darby, John Piacitelli, ... and as many more familiar c/s names in the program book

Leslie Morrison, PAI; Neal Adams, MD, Santa Cruz; Curt Decker: NAPAS;

Hutchins: preserve dignity, privacy, safety

NASMHPD: :s & r are not treatment interventions

Glover: when a deaf person is handcuffed, it is the equivalent of being gagged (lessons from the deaf and hard-of-hearing for information )

Adult psychiatric inpatients experience extraordinarily high rates of physical and/or sexual abuse, ranging from 43% - 81% and tend to stay hospitalized longer largely because the abuse is not acknowledged.

McKinney: deeply moving speech about her own experience with seclusion and that of the seclusion of the "somebody" in the seclusion room next door. Seclusion is "a violation of the human spirit." Standing applause

I’m struck that one of the handouts, from NTAC , uses the words violence and coercion in the context of s&r, since I see and use these words in the context of forced treatment. I hope that s&r and other psychiatric coercion is eliminated as a result of this initiative.

Curie: CSAP new director Davis; life in the community for everyone, building recovery and facilitating resilience, people should not be retraumatized by the services put in place to help them. S&r resource center, consumer-based staff training manual. Elements to elimination: adequate staff, training, active treatment leading to community integration, ... (It is stunning to me that Curie speaks of the number of c/s in treatment who have been abused, and how important it is to not trigger, retraumatize, and there is not one word about preventing the initial abuse, domestic violence, incest, ... all emphasis on preventing the repeat, the trigger. Instead lots on how we can use the new anti-psychotics and talks downs instead of take downs. S.)

DSM IV definition of human-induced traumatic stressors: exert violent and absolute control while engendering utter helplessness and fear. (This sounds like all forced treatment, not just s&r, psychiatric abuse and iatrogenic trauma. S.)

Open mic: J Rock; Trina - s&r teaches children that violence and abuse of power is OK; Pollack, OR, broaden agenda about the imposition of force, use of force in psychiatry book soon to be published by American Association of Community Psychiatry; Decker: work groups and commissions instead of funding, need adequate funding (more) to investigate; s&r is a human rights violation; Judi, ending the use of torture as treatment;

Karp: "The use of coercion, no matter how subtle, will usually undermine the engagement process and prevent the development of trust. This can have a tremendous negative impact on the person seeking treatment, often alienating him or her from the system that has been designed to help."

Panel: Tom Lane, Joyce Jorgensen, Gayle Bluebird - rotated reading personal quotes of experiences with s&r - "walk softly on the holy ground of the people you work with" (I’ve been in seclusion, chemically restrained, not in physical restraints - listening to the stories has caught up with me - I am cold, shivering, profoundly sad S.); Nihart - "The worst punishment deemed possible in prisons is seclusion/solitary confinement. In psychiatric hospitals, people who behave inappropriately are placed in seclusion. Perhaps the only difference is that in psychiatry we call it ‘therapeutic.’" Hughes - "The medical model is highly effective in treating illnesses, but not in promoting health." Focus on deficit not recovery, on knowledge not suffering, and accepting inflicting pain to cure. Stefan - we must transform a culture of force ; restraints are a bellwether for a system that is not working.

I walked outside for a minute, chatted with Jacki McKinney, this year’s Beers winner, nominated by Laurie Ahern and Dan Fisher, who said I’d been a model for her, and others, by working independently and becoming recognized for the work rather than the organization represented,.and returned to see that the room is now full, with an overflow row in the rear, hugely stuff and stale, I have seen one cane, no other visible disability, wheel chair, ... which may be just as well since there is no place in this room for wheel chairs, the side aisles are so narrow I have to walk sideways, and entering the far end seats from the center aisle means awkwardly scuttling past six or seven others is not graceful.

Buffet lunch eaten at our tables in the meeting room

NTAC proposal funded: Violence and Coercion Free Mental Health Settings

Karp, continuing pioneering work in Pennsylvania; Huckshorn - Internet a wonderful tool! for reviewing what is happening in the field; respite rooms, sensory soothing, self-soothing space; root cause analysis problem solving method; Osher, Federation of Families. (No youth here to speak for themselves.)

Carole Schauer’s husband died last Friday - condolences if you wish to

Work Group - advocacy and rights; 30 participants, five panelists, facilitator, 3 obvious people of color

Bernstein - psychologists at APA want to be order s&r too because "we’re doctors too." Morrison - CA the most restraint related deaths. Regulations are facility related, should be process/restraint related. Need to include chemical restraint - involuntarily emergency medication.

Audience - Judi, not a time to be cautious and incremental; Piaciatelli - older adults; lots of ideas, specific, P&A focused, big picture not grasped.

Work Group Report Outs

Leadership - partnership - HRSA, NIMH, academia, professional ass’ns, providers, states, corrections, parts of HHS, emergency rooms, private sector, consumers and families, unions, congress; scope/vision - other SAMHSA matrix areas, other target populations like traumatic brain injuries, root causes of system failures, staffing, definitions of s&r including chemical restraint, public hospital roles are changing; reporting - transparency, standardized uniform format, tool for management, accountability re who reports; trust/confidence/awareness - how to make people feel safe, environment of trust

Promising Practices - national registry of programs, away from medical to recovery model, patient education, wellness program, centralized reporting of abuses direct from facility (from patient?), active treatment

Training and technical assistance - culture change - experiential training all staff in s&r during orientation and then annually; education/training

Advocacy - need for data, enforce children’s mental health act, create a "rogue state" list of worst five with bad practices, gather data across, enforce one hour rule, advocates need to gather own data not rely on facility or system; define restraints to include physical and chemical; broadly define institutions to include schools; chemical restraint is involuntarily emergency medication;

... (I missed a lot here ), view s&r as human rights violation, as assault & battery, 24/7 advocate in facilities using peers trained by Rehab, additional P&A resources targeted not % across, s&r in ambulances, emergency rooms, intake into s&r, cultural violence, rape, incest and mh systems becomes a model for coercion and violence, centralized federal reporting system, time for action is now, timelines from SAMHSA, issue press release now, today, with target date for ending s&r, SAMHSA plan is weak, tracking deaths is not enough, where is CMS, promote a high level inter-agency meeting.

Data Collection - standardize, create research agenda, identify best collectors/publishers, disseminate

Prescott: violence and dominance are not the best reflection of who we are as human beings