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: parisser@att.net

URL: http://home.att.net/~LetFreedomRing

Opening JokeThe 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.

Answers1. 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 months4. Because they’re qualified5. Stigma and discrimination6. 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 ConfusionThere is often confusion about mission and goals;

What is the desired product?• 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

• 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 TaleOnce 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 THEMMayer 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 defecthttp://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 PerspectiveThe following line represents the thousands of decisions you make every day.

|____________________________________________________________|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” |__|_________________________________________________________|

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 SelfWe 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• BrotherThese (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 self-esteem, self-admiration, self-confidence, self-glorification, self-love, self-regard, self-respect, self-satisfaction, self-sufficiency, self-trust, self-worth, self-determination, self-exaltation, self-importance, self-assurance, self-important, self-interested, self-possessed, and self-pride. I lost hope as my identity became more and more just that of “mental patient” and my loss of self-pride 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, self-admiration, self-confidence, self-glorification, self-love, self-regard, self-respect, self-satisfaction, self-sufficiency, self-trust, self-worth, self-determination, self-exaltation, self-importance, self-assurance, self-important, self-interested, self-possessed, 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

RecoveryMental 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 OthersHumorSelf-disclosureDoing fun things togetherAssisting with an immediate tangible needMeeting out of the officeShowing that you careActive listeningInviting questionsHighlighting things that you both have in commonTone of voice, rate of speakingAsking them what they wantLetting them decide where to meetBeing clear about your role and purpose as a case managerWarmth, empathy and genuineness

Six F’s

• Food

• Filth

• Filing

• Fashion

• Flowers

• Folding

The value of becoming an "Advocate"

Trauma informed care

Exposure to TraumaGeneral 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 TraumaMental 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 TraumaMental 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 29-43%

(CMHS/HRANE, 1995; Jennings & Ralph, 1997)

• Epidemic among population in public mental health system, especially women

(Ibid)

Exposure to TraumaMental 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 under-

diagnosed – 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 SystemsKey Features

• Recognition of the high rates of PTSD and other psychiatric disorders related to trauma exposure in people diagnosed with serious mental illness

• 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):

– 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?

• Not being listened to• Lack of privacy• Feeling lonely• Darkness• Being teased or picked

on• Feeling pressured• People yelling• Room checks

• 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 andmanifestation 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 SignsWhat might you or others notice or what you might feel just before losing control?

• Clenching teeth• Wringing hands• Bouncing legs• Shaking• Crying• Giggling• Heart Pounding• Singing inappropriately• Pacing

• 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?

• 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

• 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• Male staff support• Female staff support• Humor• Screaming into a pillow• Punching a pillow• Crying• Spiritual Practices:

prayer, meditation, religious reflection

• 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:

• 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