The Personal Experience of Restraint and Seclusion

The Personal Experience of Restraint and Seclusion
Module 1 The Personal Experience of Restraint and Seclusion

Learning Objectives Upon completion of this module the participant will be able to:
Outline the issues and concerns regarding the practice of restraint and seclusion Describe the use of restraint and seclusion with special needs populations Understand the personal experience of restraint and seclusion for people diagnosed with a mental illness Understand the personal experience of restraint and seclusion for front line staff

“The initiative to reduce the use of seclusion and restraint is part of a broader effort to reorient the State mental health system toward a consumer focused philosophy that emphasizes recovery and independence…Seclusion and restraint with its inherent physical force, chemical or physical bodily immobilization and isolation do not alleviate human suffering. It does not change behavior.” Charles Curie, Administrator SAMSHA

This manual was funded by the Center for Mental Health Services and is written from consumer perspectives. The goal is to bridge the differences and build a recovery-based partnership between mental health consumers and direct care staff.

Listen When I ask you to listen to me and You start giving me advice, You have not done what I have asked. When I ask you to listen to me and You begin to tell me why I shouldn’t feel that way You are trampling on my feelings. When I ask you to listen to me and You feel you have to do something to solve my problem, You have failed me. Strange as that may seem. Listen: All that I ask you to do is listen. Not talk or do – just hear me. When you do something for me That I can and need to do for myself You contribute to my fear and inadequacy. But when you accept as a simple fact That I feel what I feel, no matter how irrational Then I can quit trying to convince you And get about this business of understanding what’s behind them. So please listen and just hear me. And, if you want to talk, wait a minute for your turn And I’ll listen to you. Anonymous

Exercise: Getting to Know You

Overview

Assumptions to be Challenged
Seclusion and restraints are therapeutic Seclusion and restraints keep people safe Seclusion and restraints are not meant to be punishment Staff know how to recognize potentially violent situations

A New York study indicated that 94% of consumers who had been restrained had at least one complaint with one-half complaining of unnecessary force and 40% indicating psychological abuse (Weiss, 1998).

Consumer Complaints Ray & Rappaport, 1993
Consumers who have been restrained or secluded indicate: Predominately negative reactions Did not know the reason for the restraint/seclusion It was humiliating, punishing, and depressing Staff control was a primary factor

Lack of national standards has reportedly generated wide variability in the use of restraint and seclusion – including potentially dangerous and unsafe practices.

Safety

Conflicting Definitions of Safety
SERVICE RECIPIENTS SERVICE PROVIDERS Safety = minimizing loss of control over their lives Safety = minimizing loss of control over the environment and risk Safety Means Maximizing choice Authentic relationships Exploring limits Defining self Defining experiences without judgment Receiving consistent information ahead of time Freedom from force, coercion, threats, punishment, and harm Owning and expressing feelings without fear Safety Means: Maximizing routine and predictability Assigning staff based on availability Setting limits Designating diagnoses Judging experiences to determine competence Rotating staff and providing information as time allows Use of force (medication, restraint, seclusion) to prevent potentially dangerous behavior Reducing expressions of strong emotion

Inappropriate Uses of Seclusion and Restraint
Control the Environment Coercion Punishment

Treatment Approaches to Reduce Seclusion & Restraint
Peer-delivered services Self-help techniques New medications Emphasis on recovery Understanding the relationship between trauma and mental illness

Reading: NASPMHD Review of Literature Related to Safety and Use of Seclusion and Restraint

Special Needs Populations

Participant Manual: Special Needs Populations

Personal Perspectives: Consumers

Exercise: Hartford Courant Articles

Reading: Hartford Courant Articles

Exercise: Personal Perspectives - Consumers

Personal Perspectives: Direct Care Staff

“When I participated in my first restraint experience I vomited
“When I participated in my first restraint experience I vomited.” (Interview with mental health worker)

Exercise: Personal Perspectives: Direct Care Staff

Reading: Direct Care Staff Quotes

Understanding the Impact of Trauma
Module 2 Understanding the Impact of Trauma

Define trauma and describe how it can impact consumers in mental health settings List common reactions to trauma, and identify how trauma affects the brain Understand how hospitalization/seclusion/restraint can be retraumatizing for consumers Incorporate Trauma Assessment and De-escalation forms into current practices Recognize and utilize positive coping mechanism to deal with secondary traumatization

Overview

“Being a survivor is feeling isolated, not daring to share that part of my life (trauma) with people for fear of being rejected, feeling defective, feeling powerless, lack of understanding from professionals that whatever behaviors we took on was our way of calling for help even if it doesn’t fit society’s view of what is ‘normal’ behavior.” Survivor from Maine

“What helps me (deal with trauma) is professionals who have the ability to take care of themselves, be centered, and not take on what comes out of me – not hurt by what I say – sit, be calm and centered and not personally take on my issues.” Survivor from Maine Background Fetal alcohol syndrome is among the most common known causes of mental retardation… surpassing down syndrome and spina bifada… and as such, it is a major public health problem. The purpose of this lecture is to provide a basic overview of what we know about the effects of prenatal alcohol exposure. It is certainly not meant to be comprehensive. For more detailed overview, the following references might be helpful. It is important to remember that as the mother consumes alcohol and her blood alcohol level rises, that alcohol is freely crossing the placenta and the embryo or fetus is being exposed to the same blood alcohol levels. References Stratton, K., Howe, C., & Battaglia, F. (1996). Fetal alcohol syndrome: Diagnosis, epidemiology, prevention, and treatment. Washington, DC: National Academy Press. Streissguth, A. P. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Baltimore: Paul H. Brookes Publishing Co.

Exercise: Trauma Background

Definitions Related to Trauma

Extreme stress that overwhelms someone’s ability to cope.
Definition of Trauma: Extreme stress that overwhelms someone’s ability to cope.

Flashback A recurring memory, feeling or perceptual experience of a past event, usually traumatic, including losing awareness of present reality. The person feels like they are re-experiencing the past as if it were happening right now.

Dissociations A wide range of responses that are usually some form of numbing or “tuning out.” The person is disconnected from full awareness of self, time, and/or external circumstances.

Triggers Cues that remind a person of the trauma (often unconsciously) and start the response of re-experiencing or avoiding the trauma. Identifying triggers and realizing they are a normal response to trauma is part of the healing process.

Common Reactions to Trauma

Exercise: Common Reactions to Trauma

Participant Manual: Some Common Reactions to Trauma

Some Common Reactions to Trauma Mary S. Gilbert, Ph.D.
Physical Reactions Mental Reactions Emotional Reactions Behavioral Nervous energy, jitter, muscle tension Upset stomach Rapid Heart Rate Dizziness Lack of energy, fatigue Teeth grinding Changes in the way you think about yourself Changes in way you think about the world Changes in the way you think about other people Heightened awareness of your surrounding (hypervigilance) Lessened awareness, disconnection from yourself (dissociation) Difficulty concentrating Poor attention or memory problems Difficulty making decision Intrusive images Fear, inability to feel safe Sadness, grief, depression Guilt Anger, irritability Numbness, lack of feelings Inability to enjoy anything Loss of trust Loss of self-esteem Feeling helpless Emotional distance from others Intense or extreme feelings Feeling chronically empty Blunted, then extreme feelings Becoming withdrawn or isolated from others Easily startled Avoiding places or situation Becoming confrontational and aggressive Change in eating habits Loss or gain in weight Restlessness Increase or decrease in sexual activity Self-injury Learned helplessness Addictive behaviors

Effects of Trauma on the Brain

Effects of Trauma on the Brain
Trauma can activate various systems in the brain that actually change neuron response and cognitive pathways. Children can develop systems in their brains that cause them to be constantly hyper-aroused and hyper-vigilant or dissociate. Trauma affects the autonomic nervous system. Trauma may be associated with abnormal activation of the amygdala, abnormal levels of cortisol, epinephrine, and norepinephrine, and structural changes to the hippocampus. The incidence of other serious illness, including chronic pain with no medical basis, cardiovascular and digestive problems, is higher among people who have experienced severe trauma.

Effects of Trauma on the Brain www.ChildTrauma.org

Differential Responses to Threat

Differential Response to Threat
Dissociation Hyperarousal Detached Hypervigilance Numb Anxious Compliant Reactive Decreased Heart Rate Alarm Response Suspension of Time Increased Heart Rate De-realization Freeze: Fear Mini-psychoses Flight: Panic Fainting Fight: Terror Source: Perry, M.D., Ph.D.

Assessment of Trauma

Assessment of Trauma Mental Health professionals cannot develop appropriate treatment plans or interventions for clients in the absence of knowledge about their histories of physical or sexual abuse (MMH, Accreditation Manual for Mental Health, 1995). All clients need to be asked about their history of sexual, physical, and verbal abuse in all clinical settings.

“Never being asked about trauma is like the abuse as a child
“Never being asked about trauma is like the abuse as a child.” Survivor from Maine

Survivors and Trusted Professionals Speak about Recognizing (or Avoiding) the Prevalence, Indicators and Impact of Trauma: What Hurts The way questions were asked was impersonal, cold and intimidating. (Survivor) It is fearful to disclose the abuse. “You risk being judged, being penalized, being discredited, invalidated, and having your feelings minimized.” (Survivor) “When you get a mental illness label, you lose all credibility.” (Survivor) The consequences of mis-diagnosis include: wrongful medication, over-medication, tardive dyskinesia and other reactions to medications, inappropriate and ineffective treatment. (Professional) Stigma in the mental health field is a problem. It takes a longer time for men to disclose abuse than women. “Men do not disclose their histories of sexual and physical abuse because of the stigma attached to being a male survivor.” (Professional)

Survivors and Trusted Professionals Speak about Recognizing (or Avoiding) the Prevalence, Indicators, and Impact of Trauma: What Helps Staff who are calm, who will sit and listen in a relaxed manner are essential. (Survivor) The person doing the intake should understand the fear (of disclosing abuse). “Threats from the past are still present. If you tell, you will die, your sister will die.” (Survivor) Training is needed in looking for, identifying, assessing and treating mental health clients in the framework of trauma. (Professional) Training is needed in putting aside one’s own beliefs and expectations, and meeting clients where they are at, rather than where I think they may be. (Professional)

Exercise: Assessment of Trauma

Retraumatization via Hospitalization

Survivors Speak about Retraumatization via Hospitalization - Creating Safe Places for Healing: What Hurts – pg 1 There is a lack of knowledge/training for survivors and staff regarding therapeutic approaches and the link between trauma histories and the presenting symptoms causing the need for hospitalization. (Survivor). There is a general disrespect for patients as human beings that should be valued as full partners in the treatment and recovery process. “They take your clothes away and watch you take showers.” (Survivor) Insurance payments control the length of hospitalization.

Survivors Speak about Retraumatization via Hospitalization - Creating Safe Places for Healing: What Hurts – pg 2 “You’re sick enough to stay when you have insurance. You’re suddenly improved enough to leave as soon as your insurance runs out.” Seclusion and restraint techniques are retraumatizing and inhumane approaches to managing symptoms. “I would rather die than go back to the hospital.” “It involves 5-6 guys chasing you down, holding you down – just like rape. So you are terrified and you try to get away from them and you strike out to protect yourself. Then they call you ’assaultive’ and that follows you to the next hospital and they say to you, ‘I hear you hit someone.’” (Survivor)

Survivors and Trusted Professionals Speak about Retraumatization via Hospitalization - Creating Safe Places for Healing: What Helps Training needs to be offered that addresses all the aspects of trauma recovery (staff and client issues). “Training needs to be done in: 1) how the staff can avoid being reactive; 2) recognizing when the staff or the client is in a state when they cannot receive information, for example because of high anxiety; and 3) when the staff should be interactive.” (Professional) Survivors need training also. “When asking survivors about seclusion and restraint, ask them about what responsibility they have in the situation. Do not automatically put the person in a victim role.” (Survivor)

De-Escalation Preferences

Exercise: De-Escalation Preferences

What Survivors Want in Times of Crisis

Survivors: When I am in crisis, I need persons:
“Who can BE with me when I am in distress; be present with me when I am in pain.” “Who will acknowledge my pain without trying to ‘fix’ it. This takes someone who knows his/her own pain and is not afraid of it or of yours.” “Who is not afraid of my sexual abuse. I don’t need someone else’s fear.” “Who has worked with their own sexual abuse – another survivor can do this.”

Survivors: When I am in crisis, I need persons: (pg 2)
“Who will ask what would help and trust I know whether or not I need hospitalization.” “Who understands the coping role of suicidal thoughts, as a relief, and end to the pain, as giving a sense of some control.” “Who knows the difference between “I want to die” (despair, hopelessness) and “I want to kill myself” (anger, defiance).” “Who will understand, control and prevent me from hurting myself when I am in danger, but still give me options and choices, and respect me in a way that doesn’t treat me like an animal.”

Staff Trauma (Secondary Traumatization)

Reading: Adult Survivors of Childhood Sexual Abuse in the Mental Health System: Involuntary Intervention, Retraumatization, and Staff Training

Healing from Trauma

Five Necessary Elements for Healing From Trauma - “Turning Points” by Sue Coates
Safety Empowerment Creation or Restoration of Positive Self Regard Reconnecting to the World Intimacy

Participant Manual: Dealing with the Effects of Trauma: A Self-Help Guide by Mary Ellen Copeland

Grounding Techniques

Exercise: Grounding Techniques

Journal/Take Action Challenges

Creating Cultural Change
Module 3 Creating Cultural Change

Learning Objectives Upon completion of this module the participant will be able to :
Understand seclusion and restraint from a primary, secondary, and tertiary public health prevention model Identify key components of successful programs that are eliminating seclusion and restraint Outline the key elements of cultural change, including intrapersonal change, interpersonal change, and system change Define safety from both a service recipient perspective and service provider perspective Describe what consumers say would be helpful in preventing the use of seclusion and restraint

Exercise: Flowers are Red

Participant Manual: Flowers are Red

Overview

A working definition of cultural change
Lasting structural and social changes (within an organization or set of linked organizations), PLUS Lasting changes to the shared ways of thinking, beliefs, values, procedures and relationships of the stakeholders

Treatment of Consumers
In a fundamental way, the issue of seclusion and restraint is about how mental health systems treat the people they serve. (National Association of State Mental Health Program Directors)

Seclusion and Restraint are not evidence-based practices
The research on the use of seclusion and with children or adults provides evidence that the experience may actually cause additional trauma and harm (Finke, 2001) There is no research to support a theoretical foundation for the use of seclusion with children (Finke, 2001) 30 years of evidence demonstrates that seclusion does not add to therapeutic goals and is in fact a method to control the environment instead of a therapeutic intervention (Finke, 2001) “Seclusion and restraint are persistent national issues, even though we have known with certainty since the 1960’s that their use is harmful, indeed life threatening at times.” Rodney Copeland – former Vermont Commissioner

Seclusion and Restraint are not evidence-based practices – pg 2
Most episodes of seclusion and restraint occur within the first few days after admission, and the majority of incidents occur with a very small number of individuals (NASMHPD) Our goal is to improve the system, rather than placing blame on any one group for how it currently exists. Using a Public Health Model of Prevention may be helpful for thinking about eliminating the use of seclusion and restraint.

A Public Health Model that eliminates the use of seclusion and restraint would support:
The selection and use of the least possible restriction consistent with the purpose of the intervention. Establishing a culture that minimizes the occurrence of events that might lead to the use of seclusion and restraint A culture that emphasizes the importance of valuing what consumers say about what contributes to a safe environment Identifying and resolving conflicts early, before they escalate

A Public Health Model that eliminates the use of seclusion and restraint would support:
Training in techniques of early intervention for all staff Policies and procedures that only allow safe use of seclusion and restraint on those rare occasions when it is required to maintain safety Staff and consumers being fully debriefed after any use of seclusion and restraint and the information obtained would be used to prevent further episodes

Preventing and reducing the need for seclusion and restraint
Primary Prevention Preventing and reducing the need for seclusion and restraint

Using the least restrictive methods possible
Secondary Prevention Using the least restrictive methods possible

Intervention to reverse or prevent negative consequences
Tertiary Prevention Intervention to reverse or prevent negative consequences

Pennsylvania: A Model for Reform

Leading the Way: Toward a Seclusion and Restraint Free Environment by the Pennsylvania Office of Mental Health & Substance Abuse

Pennsylvania Model 1997 – Pennsylvania Department of Public Welfare’s Office of Mental Health and Substance Abuse Services (OMHSAS) announced that all nine State mental hospitals would actively pursue the elimination of seclusion and restraint.

Seclusion and restraint reflects treatment failure

Pennsylvania Model Success
Computerized data collection and analysis Organizational change strategies Medications that target aggressive behavior Staff crisis prevention and intervention training Risk assessment and treatment planning tools Debriefing methods Recovery-based treatment models Adequate number of staff

Pennsylvania Model Policy
A physician must order seclusion or restraint. Orders are limited to one hour and require a physician to physically assess the consumer within 30 minutes. Consumers being restrained cannot be left alone. Chemical restraints are prohibited. Consumers and staff must be debriefed after every incident, and treatment plans must be revised. Data regarding use of seclusion and restraint are made available to consumer and family organizations and government officials.

Staff Involvement Staff members encourage consumers to creatively resolve or avoid factors that cause or escalate aggressive and self-injurious behavior

Cost Effective Entire initiative used current staff and had no increased costs associated with it

Pennsylvania Restraint Usage

Pennsylvania Seclusion Usage

Public Access to Data Public access to data created healthy competition among State hospitals to continue further reduction of seclusion and restraint

Decreased Staff Injuries

Cultural Change

Cultural Change and Consumer Recovery
Cultural changes created quicker consumer recovery, hospital discharges and community reintegration.

Partnerships Consumers and Caregivers
Stronger partnerships among consumers and caregivers

Social Justice Levels of Change
Intrapersonal – occurring within the individual mind or self Interpersonal – involving relationships between persons Systems/Cultural Change

“Be the change you want to see in others.”
Ghandi Quote “Be the change you want to see in others.” Mahatma Ghandi

Who we are and how we do things
Defining Culture Culture: Who we are and how we do things

Cultural Building Blocks
Norms Climate Organizational Support Values

Exercise: My Organization Currently Is…

Exercise: People with a Mental Health Diagnosis Are…

Participant Manual: My Organization Currently Is…

In Our Own Voices

Survey Questions Have you ever been in seclusion or restraints?
What would have been helpful in preventing the use of seclusion or restraints for you? Some people suggest that “talking to them” helps. What would you have wanted to hear? What other options may be have been beneficial?

Participant Manual: What Would Have Been Helpful

Exercise: What Would Have Been Helpful to Hear

What would have been helpful for you to hear? – pg 1
Let’s sit down and talk about the problem It’s your choice to discuss, I only have to restrain if you start hurting someone You are going to be ok We are here to help you Can we call someone for you? No one is going to hurt me Something gentle and kind I’m here to listen, I’m here for you It will get better This will pass I won’t leave you What I wanted to hear was that I can get better

What would have been helpful for you to hear? – pg 2
I would have wanted to hear I would soon feel calmer. How can we help? Your parents are coming You are all right, but your behavior is inappropriate I’m a person too and allowed to make mistakes All feelings are normal I’m here to listen, I’m here with you That I was ok, that I was safe Description of where I was and what was going on Do you want to talk about what you are feeling? Humor Could I get you something? Are you comfortable? I can see that you are hurting. Can we talk?

What Other Options May Have Been Beneficial?
Taking a walk Physical exercise Read my Wellness Recovery Action Plan (WRAP) To be able to cry; chemical restraints often prevent this Have someone sit with me for a while Sometimes just to be heard helps Take shower or bath Draw Being able to yell A homey setting – soft chairs, drapes, pictures

What Other Options May Have Been Beneficial?
With permission, a hand on a hand, an arm around a shoulder – it is important to make contact EARLY on with someone about to “lose touch” Being allowed to have something of my own to comfort me Take time to review the file and ask questions Getting everyone’s attention off of the misbehavior and onto what caused it to happen in the first place Talking to the doctor more about the medications A big over stuffed, vibrating, heated chair with a blanket, headphones and gentle soft music

“…my son was to be committed to the State Hospital
“…my son was to be committed to the State Hospital. When the sheriff came to take him Mark said, “I’m not going.” Instead of the Sheriff putting restraints on Mark he said, “Can I come in?” He sat down and talked to Mark for an hour. Mark finally said, “If I have to go I’ll go.” He walked out to the car and rode in the front seat with the Sheriff 250 miles to the closest State Hospital. Talking, time and patience does work.”

Understanding Resilience and Recovery from the Consumer Perspective
Module 4 Understanding Resilience and Recovery from the Consumer Perspective

List characteristics of resilient people
Learning Objectives Upon completion of this module the participant will be able to: Define resilience List characteristics of resilient people Define recovery and list the eight assumptions of recovery Effectively implement recovery and resilience strategies that lead to the elimination of seclusion and restraint.

Overview

Resilience

Resilient People Beat the Odds
”Resilient people are those who ‘beat the odds.’ They have good healthy outcomes, even in the presence of enormous adversities in their lives.” Michael Resnick, Ph.D., 1999

Resources to Be Developed
“Young people are resources to be developed, not problems to be solved.” Karen Pittman, Ph.D. We could substitute, “people diagnosed with a mental illness” in Dr. Pittman’s quote – and that is exactly the paradigm shift we are moving towards. People diagnosed with a mental illness are resources to be developed, not problems to be solved.

Resilience is….. “… the power of the human spirit to sustain grief and loss and to renew itself with hope and courage defies all description.” Dr. Daniel Gottlieb, 1991 “…when success occurs despite major challenge” Ann Masten, Ph.D. “…self-righting capacities – the strengths people, families, schools, and communities call upon to promote health and healing.” SAMHSA

Exercise: Someone Who Believed in Them Helped Them to Recover

As the old man walked along the beach at dawn, he noticed a young woman ahead of him picking up starfish and flinging them back into the sea. Finally, catching up with her, he asked why she was doing this. The answer was that the starfish would die if left until the morning sun. “But the beach goes on for miles and there must be millions of starfish,” said the old man. “How can your effort possibly make a difference?” The young woman looked at the starfish in her hand, Threw it to safety in the waves and said, “It makes a difference to this one!”

Recovery

Recovery is… …a common human experience and a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills or roles toward our understanding of mental illness (Anthony, 1993).

Recovery is… …“a process, an outcome, and a vision. We all experience recovery at some point in our lives from injury, from illness, from loss, or from trauma. Recovery involves creating a new personal vision for one’s self. (Spaniol, Gagne, & Koehler, 1997).

Exercise: Recovery as a Journey of the Heart

Participant Manual: Recovery from Mental Illness: A Guiding Vision of the Mental Health Service System in the 1990’s

Recovery Assumptions Recovery can occur without professional intervention. A common denominator of recovery is the presence of people who believe in and stand by the person in need of recovery. A recovery vision is not a function of one’s theory about the causes of mental illness. Recovery can occur even though symptoms reoccur.

Recovery Assumptions Recovery changes the frequency and direction of symptoms. Recovery does not feel like a linear process. Recovery from the consequences of the illness is sometimes more difficult than recovering from the illness itself. Recovery from a mental illness does not mean that one was not “really mentally ill”.

Exercise: What Are We Recovering From?

What are Consumers Recovering From?
Major losses of people and opportunities The catastrophe of mental illness Trauma from mistreatment Negative professional attitudes Lack of recovery skills of professionals Devaluing and disempowering programs, practices, and environments Lack of enriching opportunities Stigma and discrimination from society Lack of opportunities for self-determination Crushed dreams Lack of a sense of self, valued roles, and hope

What do Direct Care Staff and/or Families Recover From?
Worn out beliefs Hopelessness and helplessness Need to be in control An unbalanced relationship Disbelief in consumer’s ability Fear of mental illness Discrimination Hopes and expectations

Journal/Take Action Challenges

Strategies to Prevent Seclusion and Restraint
Module 5 Strategies to Prevent Seclusion and Restraint

Overview

“It is rather impressive how creative people can be when restraint is simply not a part of the treatment culture.” JCAHO Testimony John N. Follansbee, M.D. Northern Virginia Mental Health Institute

Learning Objectives Upon completion of this module the participant will:
Define and outline the benefits, underlying values, and key elements of consumer-driven supports Develop and apply a Wellness Recovery Action Plan (WRAP) Identify benefits of drop-in centers, recovery through the arts, research and technical assistance centers, and service animals. Name key elements to implement a comfort room and describe what staff can do to support these consumer-driven supports. Guide a consumer in developing a Psychiatric Advance Directive/Prime Directive Identify and implement effective communication strategies that prevent the use of seclusion and restraints, including Alternative Dispute Resolution and Mediation

“Reducing use of restraint and seclusion of individuals in mental health treatment is one of my major priorities. Seclusion and restraint - with their inherent physical force, chemical or physical bodily immobilization and isolation - do not alleviate human suffering. They do not change behavior. And they do not help people with serious mental illness better manage the thoughts and emotions that can trigger behaviors that can injure them or others. Seclusion and restraint are safety measures of last resort. They can serve to retraumatize people who already have had far too much trauma in their lives. It is my hope that we can create a single, unified policy - a set of primary principles that will govern how the Federal government approaches the issue of seclusion and restraint for people with mental disorders.” Charles Curie

General Benefits of Consumer-Driven Supports (CDS)
Self-help is a way in which people become empowered and begin to think of themselves as competent individuals and present themselves in new ways to the world. Fosters self-advocacy Fosters autonomy Ends isolation Educates family and providers

Underlying Values of Consumer Self-Help Include:
Empowerment Independence Responsibility Choice Respect & Dignity Social Action

Key Elements for Consumer/Survivor Self-Help:
Peer Support Hope Recovery

Wellness Recovery Action Plan (WRAP)

Planned responses that reduce, modify, or eliminate symptoms
The Wellness Recovery Action Plan (WRAP) is a structured system for monitoring symptoms through Planned responses that reduce, modify, or eliminate symptoms Planned responses from others when you need help to make a decision, take care of yourself, or keep yourself safe

The WRAP is divided into six sections:
Daily Maintenance Plan (including Wellness Toolbox) Triggers Early Warning Signs Symptoms that Occur When the Situation is Worse Crisis Plan Post Crisis Plan

“I remember coming home from the hospital, feeling great and as soon as I got there I was bombarded with loneliness, other peoples’ problems and all the stuff that probably helped put me in the hospital to begin with……” L. Belcher, Consumer

Participant Manual: Examples of Consumer WRAP Plans

Exercise: Developing a Wellness Recovery Action Plan (WRAP)

Drop-In Centers

“Ex-patients have similar feelings and experiences and they can understand and support each other in a way that’s different from family or professional services. We can do mutual support and understand the way we were treated. There’s nothing else out there on the weekends and evenings.” Peg Sullivan

Drop-In Centers Activities
Rap sessions (self-help group meetings) Socials or parties Guest speakers Individual and systems advocacy Serve as a referral bank for mental health services Assist with employment or housing searches

How can mental health workers support consumer run, consumer-driven drop-in centers?
Advocate for space, financial support, zoning Make referrals Provide materials and resources, if asked Offer to be a guest speaker Referral bank for mental health services Assistance with housing or employment searches

Recovery Through the Arts

Comfort Rooms

What would have been helpful in preventing the use of seclusion or restraints for you?
A homey setting – soft chairs, drapes, pictures A big over-stuffed, vibrating, heated chair with a blanket, headphones and gentle soft music

Comfort Room Definition:
The Comfort Room is a room that provides sanctuary from stress and/or can be a place for persons to experience feelings within acceptable boundaries. (Gayle Bluebird)

Comfort Room Door Sign A special place where you may spend some time alone. You may ask any staff member to use this room. There are items that you can sign-out to help you calm down and relax (stuffed animals, soft blanket, music, magazines, and more). Persons who wish to use the room will be asked to first sign their names in the sign-in book and talk to a staff member before entering.

Participant Manual: How to Set Up a Comfort Room by Gayle Bluebird

Service Animals

Psychiatric Advance Directives

“What is a Psychiatric Advance Directive (PAD)?”
A PAD is a legal document that becomes part of the medical chart that provides the following information: Treatment preferences, including seclusion, restraint, and medications Naming an “agent” or proxy who will make decisions about mental health care when the person with a mental illness is not capable of informed decision-making

Psychiatric Advance Directive
Instructional – refers to a person’s treatment wishes (i.e., what you want in the way of treatment or services and also what you don’t want.) Also known as a “living will.” Agent Driven – gives another individual the power to make decisions for you when you are deemed incapable of making decisions for yourself (i.e., who you would want to make decisions for you. Also called durable power of attorney, surrogate decision maker, or a proxy.)

Participant Manual: Why Should I Fill Out a Psychiatric Advance Directive?

Why Should I Fill Out a Psychiatric Advance Directive
Why Should I Fill Out a Psychiatric Advance Directive? (Or, sometimes the best defense is a good offense) It is very important to work with the provider(s) and your proxy in developing the PAD and to make sure significant people have copies of the PAD. Maintain choice and control in treatment Increase continuity of care Decrease possibility of involuntary treatment If hospitalized, PAD may affect kind/type treatment received Provides opportunity to discuss crisis plan with family and friends Establishes clear boundaries for release of information Provides an effective alternative to court appointed guardian Establishes plans for caring for family, finances, and pets Restores self-confidence

Exercise: Creating My Own Psychiatric Advance Directive

Advance Directive Resources
National Mental Health Association or The Bazelon Center for Mental Health Law or National Association of Protection and Advocacy Systems or Peer Education Project Centers for Medicare & Medicaid Services (CMS)

Prime Directives

Use of My Prime Directive Journal and My Prime Directive is completely voluntary and is NEVER to be mandatory

Prime Directives are self-help tools and DO NOT replace a treatment plan.

SIX ESSENTIAL STEPS FOR PRIME DIRECTIVES
Getting the “buy-in” of the facility or program that will pilot the project. Meeting with the core group of staff and reviewing the materials and goals. Meeting with the staff of the facility/program and review the materials and goals.

SIX ESSENTIAL STEPS FOR PRIME DIRECTIVES
Meeting with the young people, filling in a survey, reviewing the materials and goals, answering questions and developing a working relationship with the young people. Ongoing technical assistance through the pilot process. In three months, re-administer the surveys and see if there was a notable difference.

What Young People Are Saying About Involving Youth In Their Services and Systems
“We are young, but need to be treated as human beings and not as a problem or disorder.” “We are prototypes, not to be treated as stereotypes.” You can do all the research you want, but if you forget who we are and what we need as people, and if you don’t respond to our needs in the system and in individual treatment, you will fail, the system will fail, and we will bear the burden as we do now. You must involve youth, bring us to the table, and when we show up, you must listen. LISTEN.”

What Professionals Are Saying About Involving Youth In Their Services and Systems
“Another step is being taken when individual young people are able to speak with a powerful voice in planning their own services….” “Involving youth during treatment and service planning….Proactively solicit treatment ideas and therapeutic activities from the individual youth…Offer more treatment options. True informed consent is really about more treatment options.” (Juliet K. Chol, consultant on children’s mental health programs, Fall 2000)

ANTICIPATED BENEFITS/OUTCOMES FOR YOUNG PEOPLE
A concrete voice in treatment and service planning, including wishes and concerns. Opportunities to ask questions that are difficult to ask. A concrete plan for goals for future life. Increased self-esteem, hope and trust as they begin on the road to recovery.

ANTICIPATED BENEFITS/ OUTCOMES FOR PARENTS
A forum to hear from their children what has been difficult to hear in the past. An intermediary when communication is difficult. Insight to their children’s wants and needs. An active role in understanding their children’s goals for recovery.

ANTICIPATED BENEFITS/ OUTCOMES FOR PROGRAMS
Better informed recipients of services. More aware/responsible program staff. Provides a quality assurance mechanism. Uses a recovery oriented model. Reduction of seclusion, restraint, and coercion. Better understanding of recipients wants and needs.

“An important shift occurs when we begin to work with our clients as partners in their treatment, instead of working on them.” Cheryl Villiness Devereux Georgia Treatment Network Focal Point, Fall 2000

Communication Strategies

Exercise: How Hard Can Communication Be?

Old & New Language OUT WITH THE OLD IN WITH THE NEW Resistant families
Families with unmet needs Dysfunctional families Overwhelmed and underserved Case management Service coordinator We offer this What do you need? Make it up as we go Staff a case Families and professionals creating intervention plans together The chronics People with mental illnesses (person-first language) Disturbed child Child with emotional disturbance The mentally ill People with mental illnesses and consumers

Old & New Language OUT WITH THE OLD IN WITH THE NEW
Professionals as providers Families as preferred providers Schizophrenics People with schizophrenia We need placement for this child; where to next? Let’s develop a community plan with this child and family That’s your job Match each other’s offers SED, SMI Say the words: Seriously Emotionally Disturbed, Severe Mental Illness Do an assessment on Do an assessment with Do treatment on Do treatment with Talk about Talk with Develop services for Develop services with

You and I by Elaine Popovich, adapted by Laurie Curtis From the Consumer Network News, Autumn 1995
I am a resident. You reside. I live in a program. You live in a home. I am placed. You move in. I am learning daily living skills. You hate housework. I get monitored for tooth brushing. You never floss. I have to be engaged in “meaningful activity” every day. You take mental health days. I am learning leisure skills. Your shirt says I am a “couch potato.” I am aggressive. You are assertive. I am aggressive. You are angry. I am depressed. You are sad. I am depressed. You grieve. I am depressed. You try to cope with stress. I am manic. You are excited. I am manic. You are thrilled. I am manic. You charge the limit on your credit card. I am non-compliant. You don’t like being told what to do. I am treatment-resistant because I stop taking medication when I feel better. You never complete a ten-day course of antibiotics. I am in denial. You don’t agree with how others define your experience. I am manipulative. You act strategically to get your needs met. My case manager, therapist, R.N., doctor, rehabilitation counselor, residential counselor, and vocational counselor all set goals for me for next year. You haven’t decided what you want out of life. Someday I will be discharged…maybe. You will move onward and upward, perhaps even out of the mental health system. I have problems called chronic; people around me have given up hope. You are in a recovery process and get support to take it one day at a time.

“I’m not sure it’s the exact words that are most important, but rather, the tone of voice, body language and the physical environment of the verbalization. The words need to be firm but kind, spoken by someone with whom the ‘patient’ has had prior positive experiences. The words should include references to experiences and people that the staff has determined ahead of time will help the ‘patient’ become grounded.”

What Consumers Want to Hear From Staff
You’re doing well How can I help you? I’m here for you We can work together through this It’s OK to feel like that I accept you and love you the way you are What do you need at this time?

What Consumers Want to Hear From Staff
You’ve come a long way You’re’ a strong person I admire your courage in dealing with this pain I encourage you Don’t give up I can’t promise, but I’d do my best to help I don’t understand. Please tell me what you mean

ROAD BLOCKS TO ACTIVE LISTENING
Attraction Physical Condition Concerns Over eagerness Similarity of problems Prejudice Differences Defensiveness Anger

Exercise: Road Blocks to Active Listening

Alternative Dispute Resolution

Alternative Dispute Resolution Definition:
The term Alternative Dispute Resolution applies to the creative solving process that does not engage in litigation through the courts.

Mediation Definition:
Mediation is not the practice of law; it is the art and science of bringing disputing parties to mutual agreement in resolving issues. Mediation does not find fault or blame.

Another definition of Mediation:
Mediation is a dispute resolution process in which a neutral third party assists the participants to reach a voluntary and informed settlement.

In mediation the goal is to clearly identify:
The issues, The needs of the disputants with respect to the issues, A range of possible solutions, and A solution agreeable to all parties involved.

The following are the usual steps in the mediation process:
Those in dispute agree to mediation. Those in dispute agree upon a mediator. Those in dispute agree upon the ground rules. Each person tells his/her own story.

The following are the usual steps in the mediation process:
Those in dispute identify the problems (issues). Those in dispute explore possible solutions. Those in dispute select a solution. Those in dispute sign an agreement.

In order for mediation to be successful participants should be willing to:
Solve the problem Tell the truth Listen without interrupting Be respectful Take responsibility for carrying out the agreement Keep the situation confidential

Research, Training, and Technical Assistance Centers

Participant Manual: Research, Training, and Technical Assistance Centers

Participant Manual: Children’s and Adolescent’s Mental Health Services Technical Assistance and Research Centers

Sustaining Change through Consumer and Staff Involvement
Module 6 Sustaining Change through Consumer and Staff Involvement

Recognize leadership roles for administration, staff, and consumers as it relates to the elimination of seclusion and restraint Describe the role of the Office of Consumer Affairs/Consumer Advocate and the role they play in eliminating the use of seclusion and restraint Identify key elements of debriefing, advance crisis management, and data collection and analysis Outline the pro’s and con’s of having an external monitoring system related to seclusion and restraint Identify key characteristics of the Role of the Champion

“The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package.” Will Pflueger, Consumer

Overview

Leadership

Administrators can sustain change by providing:
Policies & Procedures that move toward a seclusion and restraint free environment Adequate staffing Staff training and continuous in-service training Placing seclusion and restraint training on all meeting agendas from the housekeeping department to the board of directors Personal involvement in debriefing after every incident of seclusion or restraint in a supportive and problem solving manner

Meaningful Consumer Involvement means:
Beyond tokenism Beyond review and comment Beyond advice Beyond sign-off

An Office of Consumer Affairs (OCA) is a vehicle to ensure that a variety of consumer/ survivor voices are heard with meaningful system change initiatives.

Benefits of an Office of Consumer Affairs
De-stigmatizing people diagnosed with mental illness or psychiatric disability Ongoing process of consumer participation Recognizing the civil and human rights of people diagnosed with mental illness/psychiatric disabilities

OCA Areas of Responsibility
Policy and Regulation Development Program Planning Evaluation and Monitoring Training Finance and Contract Management Complaints and Grievances

Goals of Consumer Advocates
Represent consumers/families/ guardians from their perspective Promote highest standard of care for people receiving treatment for a mental illness

Job of Consumer Advocate
Protect Consumer Rights!

Consumer Advocate Roles
Administer De-escalation Form Making regular rounds on units Being part of policy making and new initiatives (e.g., Comfort Rooms, special programs, recognition, festivities) Being present at team meetings Being the “eyes and ears” for the administrator

P&A Nationwide Network
Protection and Advocacy is a nationwide network of congressionally mandated, legally-based disability rights agencies

P&A Responsibilities:
Provide legal representation Maintain a presence in facilities, if possible Monitor, investigate and attempt to remedy adverse conditions

Participant Manual: Listing of Protection & Advocacy Offices

Exercise: National Technical Assistance Center Networks

Participant Manual: National Technical Assistance Center Networks Newsletter

Exercise: Direct Care Staff Leadership

Debriefing

“I don’t know what caused me being put in seclusion
“I don’t know what caused me being put in seclusion. I have asked for 26 years because I NEVER want to cause that again.” Consumer, NAC/SMHA Survey

Debriefing can be used for different purposes:
Risk Management Quality Improvement Staff Support

Staff Debriefing Sessions include the following:
Discussion of the emergency safety situation that led to the use of seclusion or restraint Alternative Techniques Staff procedures that may be used to prevent the reoccurrence Outcomes

Debriefing Model - Rupert Goetz, M.D.
Facts Feelings Education Planning

Participant Manual: Debriefing Survey for Consumers

Exercise: Debriefing Role Play

Advance Crisis Planning

“I’m afraid of closed in places and this is in my files
“I’m afraid of closed in places and this is in my files. No one took time to look at it or even read it.” Consumer, NAC/SMHA Survey

Data Collection

External Monitoring

Goals of External Monitoring
Improve and enhance the quality of life for consumers Promote effective communication between consumers, staff, and families

What Monitors are Looking For
Overall appearance and cleanliness of unit Census, number of staff, number of consumers on the unit Interaction between consumers and staff Activities currently available Number of consumers sleeping or in their rooms Quality and choices of food Number of incidents of seclusion and restraint Supplies/equipment available to consumers

Monitors are typically trained in the following areas:
Confidentiality What to look for on a site visit How often to visit When to visit How to accurately document How to write a report How to follow up on issues reported How to report emergency issues How to evaluate milieu issues (not clinical issues)

Role of the Champion

“Cowardice asks the question – is it safe
“Cowardice asks the question – is it safe? Expediency asks the question – is it politic? Vanity asks the question – is it popular? But conscience asks the question – is it right? And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but one must take it BECAUSE it is right.” Dr. Martin Luther King, Jr.

Journal/Take Action Challenge

Module 7 Review and Action Plan

Identify key concepts from Modules 1-6
Learning Objectives Upon completion of this module the participant will be able to: Identify key concepts from Modules 1-6 Develop a personal action plan for reducing seclusion and restraint Develop a workplace action plan for reducing seclusion and restraint

“Cowardice asks the question – is it safe
“Cowardice asks the question – is it safe? Expediency asks the question – is it politic? Vanity asks the question – is it popular? But conscience asks the question – is it right? And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but one must take it BECAUSE it is right.” Dr. Martin Luther King, Jr.

Review

Module 1: The Personal Experience of Seclusion and Restraint

“When I participated in my first restraint experience I vomited. ”
“When I participated in my first restraint experience I vomited.” (interview with direct care staff from Minnesota)

Module 2: Understanding the Impact of Trauma

“What helps me (deal with trauma) is professionals who have the ability to take care of themselves, are centered, and not take on what comes out of me – not hurt by what I say – sit, be calm and centered and not personally take on my issues.” Survivor from Maine

“Traumatic experiences shake the foundations of our beliefs about safety, and shatter our assumptions of trust.” David Baldwin

Module 3: Creating Cultural Change

“The hospital’s culture dictates whether, in what circumstances, and how often seclusion and restraint interventions are used.” Robert Okin, M.D., Former Commissioner of Mental Health in Massachusetts and Vermont

“It is not possible to solve a problem with the same consciousness that created it.” Albert Einstein

Module 4: Understanding Resilience and Recovery from a Consumer Perspective

“…the initiative (Pennsylvania’s) to reduce the use of seclusion and restraint is part of a broader effort to reorient the State mental health system toward a consumer focused philosophy that emphasizes recovery and independence.” Charles Curie, Administrator, SAMHSA

Module 5: Strategies to Prevent Seclusion and Restraint

“Ex-patients have similar feelings and experiences and they can understand and support each other in a way that’s different from family or professional services. We can do mutual support and understand the way we were treated. Peg Sullivan, Consumer

“It is rather impressive how creative people can be when restraint is simply not part of the treatment culture.” John N. Follansbee, M.D., Northern Virginia Mental Health Institute

Module 6: Sustaining Change Through Consumer and Staff Involvement

“The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package.” Will Pflueger, Consumer

Personal Action Plan

Exercise: Personal Action Plan

Workplace Action Plan

Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has. Margaret Mead

Exercise: Workplace Action Plan

Certificate of Completion

Evaluation

Thank you!

The Personal Experience of Restraint and Seclusion

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