Transcript Don`t Turn Your Back: What You Can Do In Your

Delaware Rehabilitation Association
Tuesday, August 12, 2008
"From Recovery to Wellness: A Consumer Driven,
Evidence Based, Culturally Competent, Trauma
Informed, Recovery Oriented, Ethical System of Care"
by
Pat Risser
154 Ronald Ave.
Ashland, OH 44805
email: [email protected]
URL: http://home.att.net/~LetFreedomRing
Opening Joke
The psychology instructor had just
finished a lecture on mental health and was
giving an oral test.
Speaking specifically about manic
depression, she asked, "How would you
diagnose a patient who walks back and forth
screaming at the top of his lungs one minute,
then sits in a chair weeping uncontrollably the
next?"
A young man in the rear raised his hand
and answered, "A basketball coach?"
POP QUIZ!!!
1. On average, how many times does a person
change jobs during his/her working life?
2. Define “career”.
3. The average job search takes ____ months?
4. Why do people with disabilities get hired?
5. Why don’t people with disabilities get hired?
6. How does an employer select between the
200-1,000 resumes received for every job
opening?
7. How many individuals have gone to work in
the past year from your program?
Individuals who need mental
health services are the reason
service systems exist; their
needs, strength and expertise
should drive the system.
Answers
1. The average person will change jobs eight
times during his/her working life.
(http://www.ncpa.org/ba/ba168.html 1995) In
2003, by the age of 30, the average person will
have had 7.5 different jobs. From “Book of
Ages:30”
2. Career - A lifelong process of continuous
growth through work or work related activities.
3. Six months
4. Because they’re qualified
5. Stigma and discrimination
6. Who you know is the most important factor in
a successful job search.
Systemic Problems
"Adults with serious mental illness
treated in public systems die
about 25 years earlier than
Americans overall, a gap that's
widened since the early '90s when
major mental disorders cut life
spans by 10 to 15 years."
Report from NASMHPD (National Association of State
Mental Health Program Directors), May 7, 2007
Systemic Confusion
There is often confusion about mission and goals;
What is the desired product?
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Treatment hours
Tenure in the community
Quality of life
Normalization
Increased agency funding
Generating more Medicaid billable units of service
The system’s biological approach reduces human
distress to a brain disease, and recovery to taking a pill.
The focus on drugs obscures issues such as housing and
income support, vocational training, rehabilitation, and
empowerment, all of which play a role in recovery.
Problems with the Mental Illness System
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Clients are trained to be "mentally ill" and not mentally healthy
Efforts are focused on disability instead of strengths and abilities
Dependency is maintained under the guise of good care
The system creates a suffocating "safety net"
Clients are not given the right to make mistakes (fail) without it being judged
negatively
The system is deaf, dumb and blind to research and ignores it's implications in
practice
The system is staff-oriented as opposed to client-oriented
School based inculcation is so strong as to be nearly totally immutable
Severe and persistent mental illness is perceived by staff to be an intractable
condition for at least 75% of the clients
Severe and persistent disabilities associated with mental illness are grounds for
assuming clients are incapable of choice
Pervasive belief that treatment (symptom control) must precede substantive
rehabilitation efforts
Belief that impairment in one life area affects all abilities
Stereotypes
Because prejudicial stereotypes portray people
having psychiatric concerns as violent and
unpredictable, treatment has largely become
synonymous with social control. As a result,
many mental health clinicians tend to equate
subduing the person with treatment; a quiet
client who causes no community
disturbance is deemed "improved" no
matter how miserable or incapacitated that
person may feel as a result of the treatment.
Identifying and overcoming "mentalist" attitudes
A Fairy Tale
Once upon a time in a land by the ocean, people lived in comfort
and prosperity. Over time, they came to notice that some of the people among
them had unusual experiences. Some heard voices, others saw things that
other people couldn't see, others became very agitated or very sad, some
became confused. At times these experiences caused people much pain, and
they suffered and their families suffered with them.
The families went to the leaders of the people and cried, "Our sons
and daughters are suffering. You must help us." and the leaders of the people
saw the truth in what they said and undertook to find a cure for these ills.
Whereupon they commanded wise and compassionate doctors and profitable
pharmaceutical companies to bring before them new treatments - wondrous
drugs that would heal people if taken regularly.
And so the drugs were administered to the sons and daughters who
had these unusual experiences. But apparently an evil spell had been cast
upon the medications, for they were far less effective and far more injurious
than promised. Many sons and daughters were crippled by their effects.
Many feared the medicine had been turned to poison. "This drug doesn't help
me at all….it makes me too tired….it makes my muscles stiff…it makes me
too jumpy…I gained 50 pounds on it…it makes me feel like a zombie," they
were heard to say. The sons and daughters were frightened and disappointed,
and they threw down the pills and returned to their unusual lives and unusual
experiences.
A Fairy Tale (continued)
Their families were enraged and returned to the leaders and the doctors.
"You must help us," they said, "Our sons and daughters do not see how wonderful
these medications are, and they will not take them."
"Never fear," said the leaders, "we will create a law that will compel your
children to take the drugs they need, for it is clear that they do not have the insight and
judgment to make this decision on their own."
And so a proclamation went throughout the land requiring people who were
afflicted by visions and voices, mood swings and confusion to appear for their required
medications. Thousands upon thousands of sons and daughters were forcibly, but
compassionately injected and, Lo, they began to heal. Unburdened by their symptoms,
the sons and daughters were able to keep their medication appointments and attend
day treatment regularly.
And they all lived happily ever after, with minimal residual disability and
fewer side effects than placebo.
The end.
Like I said….it's a fairy tale.
How to develop a "mental patient" identity
THE LANGUAGE OF US AND THEM
Mayer Shevin, © 1987
We like things.
They fixate on objects.
We try to make friends.
They display attention-seeking behaviors.
We take a break.
They display off-task behavior.
We stand up for ourselves.
They are non-compliant.
We have hobbies.
They self-stim.
We choose our friends wisely.
They display poor peer socialization.
We persevere.
They perseverate.
We love people.
They have dependencies on people.
We go for walks.
They run away.
We insist.
They tantrum.
We change our minds.
They are disoriented and have short attention spans.
We are talented.
They have splinter skills.
We are human.
They are.......?
Examples of Acceptable and Offensive Language
Acceptable
Offensive
Person who is disabled
Handicapped, crippled, deformed
Person who is non-disabled
Able-bodied, normal, healthy
People with disabilities
The disabled
Persons with disabilities
The handicapped
Person who uses a wheelchair
Is confined to a wheelchair
Person who is a wheelchair user
Is wheelchair bound
Person who has a cerebral palsy
Is a cerebral palsy victim
Person who has had polio
Suffers from polio
Person who has a specific learning disability
Is learning disabled
People who are blind, visually impaired, deaf, or hearing impaired
The blind, the visually impaired deaf or the hearing impaired deaf
and dumb
Person who has been labeled with a mental illness
The mentally ill, crazy person, psycho, psychopath
People who experience mood swings, fear, voices, or visions
Suffering from mental illness
Person with developmental delay
The mentally retarded, retardation, mentally deficient, retard or
retardate
Person with cognitive disability
The Down's Syndrome child
Person with Down Syndrome
Mongoloid (Never!)
People who have epilepsy
Epileptics
Person who has seizures
Fits
Person with diabetes
Diabetic
Person with a congenital disability
Birth defect
http://courses.cs.vt.edu/~cs3604/lib/Disabilities/Offensive.Language.html
Creating a Mental Patient
Medical Model vs Disability-Rights Model
Adherents to the medical model believe that a disabled
person's problems are caused by the fact of his or her
disability and thus the question is whether or not the disability
can be alleviated. Advocates of the disability-rights model, on
the other hand, believe that a person with a disability is limited
more by society's prejudices than by the practical difficulties
that may be created by the disability. Under this model, the
salient issue is how to create conditions that will allow people
to realize their potential.
“Less than”
Adults get locked up in psychiatric facilities because we are perceived as
"less than." Adults get placed in seclusion and restraints because we are
perceived as "less than." Adults get TASERed because we are perceived
as "less than." Instead of home ownership, adults are "placed" in group
homes and community living because we are perceived as "less than."
Instead of business ownership, adults are "placed" in dead-end, low-level,
jobs with no career advancement opportunities because we are perceived
as "less than." Adults who were abused, neglected and traumatized as
children get labeled as "mentally ill" because we're perceived as "less
than." Adults learn hopelessness, helplessness and powerlessness because
they've been perceived (and treated) as "less than.” When we ignore pain
and suffering, when we step over the bodies of the homeless, when we
ignore the cries of another, we create an "us versus them" who are, "less
than."
That "objective distance" of professionals keeps us as "less than."
Mental Illness: A Different Perspective
The following line represents the thousands of decisions you make every day.
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The total accumulation of these decisions is what makes us “functional” in our
daily lives.
“Mental illness” is represented by the tiny segment of the line indicated below.
“Mental Illness”
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|__|_________________________________________________________|
In some small ways, some of our decisions may be a bit off-kilter. Therefore, we
behave in ways that seem unusual and out-of-step with the rest of society. If
“mental illness” were the devastating “brain disease” that is sometimes
portrayed, it would be more pervasive and extend across much more of the
decision-making line.
Pride and Self
We define ourselves and our roles in life in ways that
proclaim our pride.
I am proud of my roles as:
• Husband
• Father
• Worker
• Teacher
• Student
• Friend
• Neighbor
• Grandpa
• Brother
These (and others) define my sense of self.
Mental Patient
“Mental Patient” is not a role in life in
which people have any pride.
“Mental Patient” is a role in which most
people are ashamed.
The Loss of Self: Becoming a Mental Patient
The more I sank into the role of “mental
patient,” the more I lost my self. I lost my selfesteem, self-admiration, self-confidence, selfglorification, self-love, self-regard, self-respect,
self-satisfaction, self-sufficiency, self-trust, selfworth, self-determination, self-exaltation, selfimportance, self-assurance, self-important, selfinterested, self-possessed, and self-pride. I lost
hope as my identity became more and more
just that of “mental patient” and my loss of selfpride resulted in a loss of self.
From What Do We "Recover? "
The Loss of Self.
“With each episode of standing up and questioning and challenging, I felt
better and stronger. I felt better as I became more self-determining. I slowly
began to regain my sense of self. I grew stronger in my self-esteem, selfadmiration, self-confidence, self-glorification, self-love, self-regard, self-respect,
self-satisfaction, self-sufficiency, self-trust, self-worth, self-determination, selfexaltation, self-importance, self-assurance, self-important, self-interested, selfpossessed, and self-pride. I acquired a renewed balance in my roles in life.
Instead of my life being dominated by my mental patient role, I became more of
a husband and father. I got into the workforce and developed a strong sense of
pride in my work and even in my ability to work; something that had been
missing for many years. That sense of self-pride grew to impact more and
more areas of my life and the sense of accomplishment was tremendous.
“So, just as I had lost my “self” I worked hard to recover that lost “self” and
pride was the key. In losing my “self” I lost my pride in who and what I am and I
became “mental patient.” In recovering my “self” I rediscovered a sense of
pride as I redeveloped into a self-determining adult.”
Recovery
Mental health recovery is a
journey of healing and
transformation enabling a
person with a mental health
problem to live a meaningful
life in a community of his or
her choice while striving to
achieve his or her full
potential.
(Consensus Conference, December 16-17, 2004)
(http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/)
Recovery
"…quality of life
(recovery) depends on a
job, a decent place to
live, and a date on
Saturday night"
Charles Curie, former Administrator, SAMHSA, June 18,
2002
Facilitating Recovery
• What are the person’s dreams?
• What have the person’s life experiences been like?
• Who are the people in the person’s life and what
kind of roles does the individual play in the
relationship?
• Where does the person spend time?
• In what activities does the individual participate?
• What works/doesn’t work for the person?
• What can the person contribute to others?
• What are the person’s interests, gifts, and abilities?
• What assistance does the person need?
Tools for Helping Others
Humor
Self-disclosure
Doing fun things together
Assisting with an immediate tangible need
Meeting out of the office
Showing that you care
Active listening
Inviting questions
Highlighting things that you both have in common
Tone of voice, rate of speaking
Asking them what they want
Letting them decide where to meet
Being clear about your role and purpose as a case manager
Warmth, empathy and genuineness
Six F’s
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Food
Filth
Filing
Fashion
Flowers
Folding
The value of becoming an
"Advocate"
Trauma informed care
Exposure to Trauma
General Population
• Until recently, trauma exposure was thought to be
unilaterally rare (combat violence, disaster trauma)
(Kessler et al., 1995)
• Recent research has changed this. Studies done in
the last decade indicate that trauma exposure is
common even in the middle class
(Ibid)
• 56% of an adult sample reported at least one event
(Ibid)
Exposure to Trauma
Mental Health Population
• 90% of public mental health clients have
been exposed
(Muesar et al., in press; Muesar et al., 1998)
• Most have multiple experiences of trauma
(Ibid)
• 34-53% report childhood sexual or physical
abuse
(Kessler et al., 1995; MHA NY & NYOMH 1995)
• 43-81% report some type of victimization
(Ibid)
Exposure to Trauma
Mental Health Population
• 97 % of homeless women diagnosed with
serious mental illness have experienced
severe physical and sexual abuse - 87%
experience this abuse both as child and adult
(Goodman et al., 1997)
• Current rates of PTSD in people diagnosed
with serious mental illness range from 2943%
(CMHS/HRANE, 1995; Jennings & Ralph, 1997)
• Epidemic among population in public mental
health system, especially women
(Ibid)
Exposure to Trauma
Mental Health Population
• 74 % of Maine’s adult mental health
inpatient consumers reported histories
of sexual and physical abuse
(Craine, 1988)
• Vast majority of adults diagnosed with
BPD (81%) or DID (90%) were sexually
or physically abused as children
(Herman et al., 1989; Ross et al., 1990)
Prevalence of Trauma in
Mental Health Population
The literature substantiates that:
– Sexual abuse of women was largely underdiagnosed
– Coercive interventions like S/R caused trauma and
re-traumatization in treatment settings
– “Observer violence” in treatment settings was
traumatizing
– Complex PTSD, DID and related syndromes
frequently misdiagnosed in treatment settings
– Inadequate or no treatment was common
(Cook et al., 2002; Fallot & Harris, 2002; Frueh et al., 2000; Rosenberg et al.,
2001; Carmen et al., 1996)
Systems without Trauma
Sensitive Characteristics
• Consumers are labeled & pathologized as
“manipulative,” “needy,” attention seeking
• Misuse or overuse of displays of power - keys,
security, demeanor
• Culture of secrecy- no advocates, poor monitoring of
staff
• High rates of Seclusion/Restraints & other restrictive
measures
(Fallot & Harris, 2002)
Systems without Trauma
Sensitive Characteristics
• Little use of least restrictive alternatives
other than medication
• Institutions that emphasize “patient
compliance” rather than collaboration
• Institutions that disempower and
devalue staff who then “pass on” that
disrespect to service recipients.
(Fallot & Harris, 2002)
Trauma Informed Care Systems
Key Features
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Recognition of the high rates of PTSD and other
psychiatric disorders related to trauma exposure in
people diagnosed with serious mental illness
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Early and rigorous diagnostic evaluation with
focused consideration of trauma in people with
complicated, treatment-resistant illnesses such as
Dissociative Identity Disorder, Borderline
Personality Disorder.
(Fallot & Harris, 2002; Cook et al., 2002; Ford, 2003; Cusack et al.)
Trauma Informed Care
Systems
Key Features
• Valuing the consumer in all aspects of care
• Neutral, objective and supportive language
• Individually flexible plans and approaches
(Fallot & Harris, 2002; Cook et al., 2002; Ford, 2003; Cusack et al.; Jennings,
1998; Prescott, 2000)
Trauma Informed Care
Systems
Key Features
• Awareness/training on re-traumatizing
practices
• Institutions that are open to outside parties:
advocacy, and clinical consultants
• Training and supervision in assessment
and treatment of people with trauma
histories
(Fallot & Harris, 2002; Cook et al., 2002; Ford, 2003; Cusack et al.; Jennings,
1998; Prescott, 2000)
Crisis Prevention Plan
First, Identify Triggers
No, not that Trigger …
These Triggers
• A trigger is something that sets off an action, process,
or series of events (such as fear, panic, upset,
agitation):
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bedtime
room checks
large men
yelling
people too close
More Triggers:
What makes you feel scared or upset or
angry and could cause you to go into crisis?
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Not being listened to
Lack of privacy
Feeling lonely
Darkness
Being teased or picked
on
• Feeling pressured
• People yelling
• Room checks
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Arguments
Being isolated
Being touched
Loud noises
Not having control
Being stared at
Other (describe)
________________
More Triggers:
• Particular time of day/night___________
• Particular time of year_______________
• Contact with family__________________
• Other*____________________________
* Consumers have unique histories with uniquely specific triggers - essential
to ask & incorporate
Crisis Prevention Plan
Second, Identify Early Warning
Signs
Early Warning Signs
• A signal of distress is a physical precursor and
manifestation of upset or possible crisis. Some
signals are not observable, but some are, such as:
– restlessness
– agitation
– pacing
– shortness of breath
– sensation of a tightness in the chest
– sweating
Early Warning Signs
What might you or others notice or what
you might feel just before losing control?
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Clenching teeth
Wringing hands
Bouncing legs
Shaking
Crying
Giggling
Heart Pounding
Singing inappropriately
Pacing
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Eating more
Breathing hard
Shortness of breath
Clenching fists
Loud voice
Rocking
Can’t sit still
Swearing
Restlessness
Other ___________
Crisis Prevention Plan
Third, Identify Strategies
Strategies
• Strategies are individual-specific calming
mechanisms to manage and minimize stress, such
as:
– time away from a stressful situation
– going for a walk
– talking to someone who will listen
– working out
– lying down
– listening to peaceful music
Strategies:
What are some things that help you calm
down when you start to get upset?
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Time alone
Reading a book
Pacing
Coloring
Hugging a stuffed
animal
Taking a hot shower
Deep breathing
Being left alone
Talking to peers
• Therapeutic Touch,
describe ______
• Exercising
• Eating
• Writing in a journal
• Taking a cold shower
• Listening to music
• Talking with staff
• Molding clay
• Calling friends or
family (who?) ______
More Strategies
• Blanket wraps
• Lying down
• Using cold face
cloth
• Deep breathing
exercises
• Getting a hug
• Running cold water
on hands
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Ripping paper
Using ice
Having your hand held
Going for a walk
Snapping bubble wrap
Bouncing ball in quiet
room
• Using the gym
Even More Strategies
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Male staff support
Female staff support
Humor
Screaming into a pillow
Punching a pillow
Crying
Spiritual Practices:
prayer, meditation,
religious reflection
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Touching preferences
Speaking with therapist
Being read a story
Using Sensory Room
Using Comfort Room
Identified
interventions:________
_________________
What Does Not Help When you
are Upset?
• Being alone
• Not being listened to
• Being told to stay in
my room
• Loud tone of voice
• Peers teasing
• Humor
• Being ignored
• Having many people
around me
• Having space
invaded
• Staff not taking me
seriously
“If I’m told in a mean way that I can’t
do something … I lose it.”
-- Natasha, 18 years old
Mechanisms To Create a
Trauma Informed Culture:
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Adopt philosophy of non-violence and non coercion
Develop policies congruent with our stated values
Identify & eliminate coercive practices
Remove overt/covert expressions of power/control,
and review rules objectively
Examine and change our language
Include consumers as full participants in treatment,
programming, policy development
Integrate peer supports and other natural supports
Meaningfully change our environments
Transforming Systems