Empowerment and Consumer Culture (#1068)

Friday, July 27, 2007

Scott Snedecor (Scott.Snedecor@state.or.us)

This workshop will introduce participants to the contributions of the consumer/survivor movement and how they are influencing the provision of services for mental health and substance use conditions today. Current terms such as "recovery" and "empowerment" will be explored in depth, along with strategies for achieving these goals both personally and within our professional work with clients. A discussion of potential barriers and obstacles to achieving a recovery-oriented system will be included, along with strategies for overcoming these barriers and achieving a truly transformed system of services. Consumers and service providers are encouraged to attend this workshop together.

Learning Objectives:

Define the terms recovery and empowerment
Explain the political structure of federal and local level mental health systems
Discuss the goals of a transformed system
Describe at least three methods for facilitating recovery

In Gaithersburg, MD

on June 17, 2002

Charles G. Curie, M.A., A.C.S.W.,

SAMHSA (Substance Abuse and Mental Health Services Administration) Administrator, stated

that systems must be consumer-driven and that consumers must be at the tables of influence in policy development, treatment planning, and recovery planning. He assured Subcommittee (SOCSI – Subcommittee On Consumer/Survivor Issues) members that SAMHSA is focused on what consumers need. He noted that the current

"era of recovery"

is based on consumers taking charge of and managing their own illnesses, affairs, and lives. He stated his understanding that

quality of life depends on a job, a decent place to live, and a "date on Saturday night" — connection to a community.

* * * * * * * * * * * * * * * * *

President Bush appointed the New Freedom Commission on Mental Health in April 2002, he asked the group to study the problems and gaps in the mental health system and to make concrete recommendations for immediate improvements that the Federal government, State governments, local agencies, as well as public and private health care providers, can implement. The Commission met for 1 year to study the research literature and to receive comments from more than 2,300 mental health consumers, family members, providers, administrators, researchers, government officials, and other key stakeholders.

In its October 29, 2002, Interim Report to the President, the Commission declared that the mental health service delivery system is not oriented to the single most important goal of the people it serves –

the hope of recovery.

* * * * * * * * * * * * * * * * *

Recovery, as defined by the Commission, is the process by which people are able to live, work, learn, and participate fully in their communities.

For some individuals, the Commission noted, recovery is the ability to live a fulfilling and productive life despite a disability.

For others, recovery implies the reduction or remission of symptoms.

For many people, recovery is a transformative process, one that is less about returning to a former self and more about discovering who one can become.

Science has shown that having hope plays an integral role in an individual's recovery.

National Consensus Statement on Mental Health Recovery

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Substance Abuse and Mental Health Services Administration

Center for Mental Health Services

Background

Recovery is cited, within Transforming Mental Health Care in America, Federal Action Agenda: First Steps, as the "single most important goal" for the mental health service delivery system.

To clearly define recovery, the Substance Abuse and Mental Health Services Administration within the U.S. Department of Health and Human Services and the Interagency Committee on Disability Research in partnership with six other Federal agencies convened the National Consensus Conference on Mental Health Recovery and Mental Health Systems Transformation on December 16-17, 2004.

Over 110 expert panelists participated, including mental health consumers, family members, providers, advocates, researchers, academicians, managed care representatives, accreditation organization representatives, State and local public officials, and others. A series of technical papers and reports were commissioned that examined topics such as recovery across the lifespan, definitions of recovery, recovery in cultural contexts, the intersection of mental health and addictions recovery, and the application of recovery at individual, family, community, provider, organizational, and systems levels. The following consensus statement was derived from expert panelist deliberations on the findings.

RECOVERY IS ...

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.

Resources

http://www.samhsa.gov

National Mental Health Information Center

1-800-789-2647, 1-866-889-2647 (TDD)

The 10 Fundamental Components of Recovery

1. Self-Direction: Consumers lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life. By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals.

2. Individualized and Person-Centered: There are multiple pathways to recovery based on an individual's unique strengths and resiliencies as well as his or her needs, preferences, experiences (including past trauma), and cultural background in all of its diverse representations. Individuals also identify recovery as being an ongoing journey and an end result as well as an overall paradigm for achieving wellness and optimal mental health.

3. Empowerment: Consumers have the authority to choose from a range of options and to participate in all decisions—including the allocation of resources—that will affect their lives, and are educated and supported in so doing. They have the ability to join with other consumers to collectively and effectively speak for themselves about their needs, wants, desires, and aspirations. Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life.

4. Holistic: Recovery encompasses an individual's whole life, including mind, body, spirit, and community. Recovery embraces all aspects of life, including housing, employment, education, mental health and healthcare treatment and services, complementary and naturalistic services, addictions treatment, spirituality, creativity, social networks, community participation, and family supports as determined by the person. Families, providers, organizations, systems, communities, and society play crucial roles in creating and maintaining meaningful opportunities for consumer access to these supports.

5. Non-Linear: Recovery is not a step-by-step process but one based on continual growth, occasional setbacks, and learning from experience. Recovery begins with an initial stage of awareness in which a person recognizes that positive change is possible. This awareness enables the consumer to move on to fully engage in the work of recovery.

6. Strengths-Based: Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals. By building on these strengths, consumers leave stymied life roles behind and engage in new life roles (e.g., partner, caregiver, friend, student, employee). The process of recovery moves forward through interaction with others in supportive, trust-based relationships.

7. Peer Support: Mutual support—including the sharing of experiential knowledge and skills and social learning—plays an invaluable role in recovery. Consumers encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community.

8. Respect: Community, systems, and societal acceptance and appreciation of consumers —including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery. Self-acceptance and regaining belief in one's self are particularly vital. Respect ensures the inclusion and full participation of consumers in all aspects of their lives.

9. Responsibility: Consumers have a personal responsibility for their own self-care and journeys of recovery. Taking steps towards their goals may require great courage. Consumers must strive to understand and give meaning to their experiences and identify coping strategies and healing processes to promote their own wellness.

10. Hope: Recovery provides the essential and motivating message of a better future— that people can and do overcome the barriers and obstacles that confront them. Hope is internalized; but can be fostered by peers, families, friends, providers, and others. Hope is the catalyst of the recovery process. Mental health recovery not only benefits individuals with mental health disabilities by focusing on their abilities to live, work, learn, and fully participate in our society, but also enriches the texture of American community life. America reaps the benefits of the contributions individuals with mental disabilities can make, ultimately becoming a stronger and healthier Nation.

Empowerment is ...

One of the key elements in Recovery and essentially it is just

making free-will choices.

Mark Ragins, M.D. in "An Empowerment Revolution Plan says that, "...mental health professionals have an amazing tradition of coercion. We have an army of clinical language (lack of insight, poor judgment, treatment resistance, noncompliance, sabotaging, incompetent to make decisions, irrational, inappropriate, etc.) to use to take power from people. Los Angeles has an entire busy court house devoted to legally forcing people to have professionally dictated psychiatric treatment. Certainly numerous pregnant women and cancer patients make poor decisions, even life endangering decisions, about their conditions, but there is no active legal machinery for forcing them to do what we think is best. Half of the people in the public mental health system entered it involuntarily and most hospitals beds are on locked wards. Many [mental health] professions seem to look back longingly on a time when they could more easily force patients to be taken care of. This tradition of coercive treatment will be difficult to overcome to achieve collaboration.

To create an Empowerment Revolution, Dr. Ragins suggests six practical changes:

ÿ Changed role for the patients – Education about their conditions and the treatment options and active choice (rather than compliance) by the patients has been emphasized. This is both a proactive process and an ongoing process as treatment decisions emerge. Women are given classes about the process of pregnancy and delivering and about the various interventions, including anesthesia that are available and they actually choose what they want. Similarly cancer patients are taught about cancer, surgery, radiation, and chemotherapy and make choices. There is a goal of increased self-mastery of their conditions and collaboration on a "birthing plan" or a cancer treatment course.

ÿ Changed roles for the doctors and other professionals – To collaborate together rather than a patient passively complying (or possibly not complying) with a doctor's orders there must be changes on both sides. The professionals must welcome, indeed foster, their patients efforts to learn about and participate actively in their treatment. The professionals became more consultants or coaches assisting patients to manage their conditions instead of managing it for them.

ÿ Increased use of self-coping techniques – Patients have been encouraged to actively treat themselves as an adjunct to medical treatments. Lamaze breathing techniques to reduce pain are now common place and visualization techniques for treating cancer are growing in popularity.

ÿ Increased use of natural supports – Including family members or friends as part of the childbirth experience or hospice team is now routine. Isolating patients with only professionals around them during their most difficult times is very rarely a medical requirement.

ÿ Increased usage of home or home-like settings – Home births and birthing centers where patients bring their own belongings are replacing sterile delivery rooms. Home health and hospice settings are replacing hospital wards for cancer patients. The medical equipment, while still often essential, is embedded into a home like environment rather than becoming its own environment.

ÿ Increased use of peer support – Many pregnant women go to classes with other pregnant women and share their experiences and support each other. Cancer survivor groups and grief groups for families of people who die from cancer are common. Especially for cancer patients a sense of pride at being a "cancer survivor" has replaced a sense of shame as a result.

A WORKING DEFINITION OF EMPOWERMENT

As defined by a group of consumer/survivor self-help practitioners who direct user-run, self-help programs.

Empowerment has a number of qualities:

1. Having decision-making power.

2. Having access to information and resources.

3. Having a range of options from which to make choices (not just yes/no, either/or).

4. Assertiveness.

5. A feeling that the individual can make a difference (being hopeful).

6. Learning to think critically; unlearning the conditioning; seeing things differently; e.g.,

a) Learning to redefine who we are (speaking in our own voice).

b) Learning to redefine what we can do.

c) Learning to redefine our relationships to institutionalized power.

7. Learning about and expressing anger.

8. Not feeling alone; feeling part of a group.

9. Understanding that people have rights.

10. Effecting change in one's life and one's community.

11. Learning skills (e.g., communication) that the individual defines as important.

12. Changing others' perceptions of one's competency and capacity to act.

13. Coming out of the closet.

14. Growth and change that is never ending and self-initiated.

15. Increasing one's positive self-image and overcoming stigma.

EMPOWERMENT is a process rather than an event. Therefore, an individual doesn't have to display every quality on the list in order to be considered "empowered."

THE ELEMENTS OF EMPOWERMENT

1. Having decision-making power.

Clients of mental health programs are often assumed by professionals to lack the ability to make decisions, or to make "correct" decisions. Therefore, many programs assume the paternalistic stance of limiting the number or quality of decisions their clients may make. Clients may be able to decide on the dinner menu, for example, but not on the overall course of their treatment. Yet, without practice in making decisions, clients are maintained in long-term dependency relationships. No one can become independent unless he or she is given the opportunity to make important decisions about his or her life.

2. Having access to information and resources.

Decision-making shouldn't happen in a vacuum. Decisions are best made when the individual has sufficient information to weigh the possible consequences of various choices. Again, out of paternalism, many mental health professionals restrict such information, believing restriction to be in the client's "best interest." This can become a self-fulfilling prophecy, since, lacking adequate information, clients may make impulsive choices that confirm professionals' beliefs in their inadequacy.

3. Having a range of options from which to make choices.

Meaningful choice is not merely a matter of "hamburgers or hot dogs" or "bowling or swimming." If you prefer salad, or the library, you're out of luck!

4. Assertiveness.

Non-diagnosed people are rewarded for this quality; in mental health clients, on the other hand, it is often labeled "manipulativeness." This is an example of how a psychiatric label results in positive qualities being redefined negatively. Assertiveness—being able to clearly state one's wishes and to stand up for oneself—helps an individual to get what he or she wants.

5. A feeling that the individual can make a difference.

Hope is an essential element in our definition. A person who is hopeful believes in the possibility of future change and improvement; without hope, it can seem pointless to make an effort. Yet mental health professionals who label their c lients "incurable" or "chronic" seem at the same time to expect them to be motivated to take action and make changes in their lives, despite the overall hopelessness such labels convey.

6. Learning to think critically; un-learning the conditioning; seeing things differently. This part of the definition created the most discussion within our group, and we were unable to come up with a single phrase that encapsulated it. We believed that as part of the process of psychiatric diagnosis and treatment, clients have had their lives, their personal stories, transformed into "case histories." Therefore, part of the empowerment process is a reclaiming process for these life stories. Similarly, the empowerment process includes a reclaiming of one's sense of competence, and a recognition of the often-hidden power relation-ships inherent in the treatment situation. In the early stages of participation in self-help groups, for example, it is very common for members to tell one another their stories; both the act of telling and that of being listened to are important events for group members.

7. Learning about and expressing anger.

Clients who express anger are often considered by professionals to be "decompensating" or "out of control." This is true even when the anger is legitimate and would be considered so when expressed by a "normal" person, and is yet another example of the way in which a positive quality becomes a negative once a person is diagnosed. Because the expression of anger has often been so restricted, it is common for clients to fear their own anger and overestimate its destructive power. Clients need opportunities to learn about anger, to express it safely, and to recognize its limits.

8. Not feeling alone; feeling part of a group.

An important element in our definition is its group dimension. We believe that it is necessary to recognize that empowerment does not occur to the individual alone, but has to do with experiencing a sense of connectedness with other people. As was brought up numerous times during our discussion, we did not want to leave the impression that we considered the image of "John Wayne coming into town, fixing everything, and riding off into the sunset" to be synonymous with our definition!

9. Understanding that people have rights.

The self-help movement among psychiatric survivors is part of a broader movement to establish basic legal rights. We see powerful parallels between our movement and other movements of oppressed and disadvantaged people, including racial and ethnic minorities, women, gays and lesbians, and people with disabilities. Part of all of these liberation movements has been the struggle for equal rights. Through understanding our rights, we increase our sense of strength and self-confidence.

10. Effecting change in one's life and one's community.

Empowerment is about more than a "feeling" or a "sense;" we see such feelings as pre-cursors to action. When a person brings about actual change, he or she increases feelings of mastery and control. This, in turn, leads to further and more effective change. Again, we emphasized that this is not merely personal change, but has a group dimension.

11. Learning skills that the individual defines as important.

Mental health professionals often complain that their clients have poor skills and cannot seem to learn new ones. At the same time, the skills that professionals define as important are often not the ones that clients themselves find interesting or important (e.g., daily bed making). When clients are given the opportunity to learn things that they want to learn, they often surprise professionals (and sometimes themselves) by being able to learn them well.

12. Changing others' perceptions of one's competency and capacity to act.

If anything defines the public (and professional) perception of "mental patients," it is incompetency. People with psychiatric diagnoses are widely assumed to be unable to know their own needs or to act on them. As one becomes better able to take control of one's life, demonstrating one's essential similarity to so-called "normal" people, this perception should begin to change. And the client who recognizes that he or she is earning the respect of others increases in self-confidence, thus further changing outsiders' perceptions.

13. Coming out of the closet.

This is a term we have taken from the gay/ lesbian movement. People with de-valued social statuses who can hide that fact often (quite wisely) choose to do so. However, this decision takes its toll in the form of decreased self-esteem and fear of discovery. Individuals who reach the point where they can reveal their identity are displaying self-confidence.

14. Growth and change that is never ending and self-initiated.

We wanted to emphasize in this element that empowerment is not a destination, but a journey; that no one reaches a final stage in which further growth and change is unnecessary.

15. Increasing one's positive self-image and overcoming stigma.

As a person becomes more empowered, he or she begins to feel more confident and capable. This, in turn, leads to increased ability to manage one's life, resulting in a still more improved self-image. The negative identity of "mental patient" that has been internalized also begins to change; the individual may discard the label entirely, or may redefine it to convey positive qualities.

"Personal Assistance in Community Existence"

Principles of PACE

The results of research into recovery

ÿ People do fully recover from even the most severe forms of mental illness

ÿ Understanding that mental illness is a label for severe emotional distress, which interrupts a person's role in society, helps in a person's recovery

ÿ People can and do yearn to connect emotionally with others, especially when they are experiencing severe emotional distress

ÿ Trust is the cornerstone of recovery

ÿ People who believe in you help you recover

ÿ People have to be able to follow their own dreams to recover

ÿ Mistrust leads to increased control and coercion, which interfere with recovery

ÿ Self-determination is essential to recovery

ÿ People recovering and those around them must believe they will recover

ÿ Human dignity and respect are vital to recovery

ÿ Everything we have learned about the importance of human connections applies equally to people labeled with mental illness

ÿ Feeling emotionally safe in relationships is vital to expressing feelings, which aids in recovery

ÿ There is always meaning in periods of severe emotional distress, and understanding that meaning helps with recovery

Recovery at Your own PACE

PACT / PACE
I. VALUES	PACT	PACE
A. Could anyone become mentally ill?	NO: labeled people not fully human	YES: therefore we are all equally human
B. Causality of Mental illness	permanent brain disorder causing illness	Severe emotional distress and loss of social role
C. Recovery	Life long process	Complete possible
D. Goal of help	Maintenance	Full recovery
E. Control	Coercion by team. Controlled by outside	Person centered,voluntary Control by self
F. Pace	Set by team	Set by consumer
II. HELP	PACT	PACE
A. Relationships	Professional distance	Peer connection
B. Main method	Medication	Person who believes in you
C. Setting	Into professionally-run	Into peer-run
D. Rights	Violated often	Respected
E. Outcome	Dependency, lacking responsibility	Self-management; gain sense of responsibility
F. Choice of help	Little choice: narrowly medical	Full choice: consumer-run, psychosocial, therapy
G. Primary person	Case Manager	Personal Assistant
H. Housing	Bundled to services through DMH's	Unbundled, through housing authorities

Mental Health Systems

TRANSFORMATION

is one of the four SAMHSA

"REDWOODS"

A "redwood" is a priority program for the investment of our efforts and our resources. Charles Curie coined this term to emphasize a new program philosophy and direction for SAMHSA. Rather than having 1,000 short-lived flowers bloom, he prefers that all three centers within SAMHSA focus on developing a few rich, major, long-lived initiatives with a lasting impact.

SAMHSA's four REDWOOD initiatives focus on:

ÿ Expanding the nation's Substance Abuse Treatment Capacity in new and innovative ways;

ÿ Strengthening our substance abuse prevention efforts and streamlining these efforts on a national scale:

ÿ Addressing the needs of adults and youth with co-occurring mental and substance use disorders; and

ÿ Implementing our action agenda to achieve a wholesale transformation of the nation's mental health services delivery system.

Transformation will happen by focus on six goals:

Goal 1. Americans understand that mental health is essential to overall health.

Goal 2. Mental health care is consumer and family driven.

Goal 3. Disparities in mental health care services are eliminated.

Goal 4. Early mental health screening, assessment, and referral to services are common practice.

Goal 5. Excellent mental health care is delivered and research is accelerated.

Goal 6. Technology is used to access mental health care and information.

Successfully transforming the mental health service delivery system rests on two principles:

* First, services and treatments must be consumer and family centered, geared to give consumers real and meaningful choices about treatment options and providers - not oriented to the requirements of bureaucracies.

* Second, care must focus on increasing consumers' ability to successfully cope with life's challenges, on facilitating recovery, and on building resilience, not just on managing symptoms.

President George W. Bush's New Freedom Commission Final Report, Executive Summary, May 2003

Federal to State hierarchy of mental health services

President – President, George W. Bush

Secretary of Health and Human Services (HHS) – Secretary, Mike Leavitt

Administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA) – Administrator, Terry Cline

Director of the Center for Mental Health Services (CMHS) – Director, A. Kathryn Power

Delaware Governor – Governor, Ruth Ann Minner

Delaware Department of Health and Social Services – Secretary, Vincent P. Meconi

Delaware Division of Substance Abuse and Mental Health – Director, Renata J. Henry

Programs that facilitate "RECOVERY"

C.R.I.S.P.

Crisis Recovery Individualized Support Plan

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

B.R.I.D.G.E.S.

Building Recovery of Individual Dreams and Goals through Education and Support

W.R.A.P.

Wellness Recovery Action Plan

NAMI Peer to Peer

To Be A Mental Patient Is...

To be a mental patient is to be told that

you are not allowed to get angry but,

those who treat you are allowed to get angry.

To be a mental patient is to be told that

you should be honest but,

those who treat you really don't want honesty.

To be a mental patient means that

you are told to understand your feelings but,

you may not express those feelings.

To be a mental patient means that

you are entitled to your opinion but,

you are not entitled to state your opinion

(unless it agrees with the opinion of your psychiatrist).

To be a mental patient means that

you must eat on schedule,

sleep on schedule,

socialize on schedule,

take drugs on schedule,

and to never, never

laugh or cry too much.

To be a mental patient means that

you are no longer the best expert on your life.

You are told that

your opinion doesn't matter.

What they don't tell you is

that you don't matter anymore.

To be a mental patient means that

everyone else is an expert on you and your life.

Everyone else can look into their crystal ball

and predict when you are going to be violent and

do unto you before you may

or may not do unto anyone else.

They know through some magic;

Their degrees matter and you don't;

They are gods reigning from lofty perches,

high within a self-constructed ivory tower.

To be a mental patient means that

you are robbed of your personal power.

Your power diminishes as the power of others increases.

Others, staff, family, doctors, nurses may all

violently place you in restraints, in solitary,

strip you, stick you, invade your body

with chemical restraints that

make you hurt - but I don't care;

make you drool - but I don't care;

make you wet yourself - but I don't care;

make you powerless by giving your power to others.

To be a mental patient is to feel suicidal sometimes

and to be caught in a double bind.

If you say anything to anybody,

it feels like you are punished by being locked up

or placed under the watchful eye of someone

like a wayward child - when what you really need

is just to talk to someone.

But, how do you live with the suicidal feelings

if you don't say anything.

To be a mental patient is to cross against the traffic light

and (unlike 'normal' people) you think about how you

could be placed on a mental health hold as a danger to yourself

because you know people to whom this has happened.

To be a mental patient is to become a label.

A label is an excuse to treat you as less than human.

He's schizophrenic or she's manic-depressive becomes

your identity. You are no longer a husband, wife,

student, worker or person.

To be a mental patient means

that you are now an official medical diagnosis

while others have their kids

drive them crazy

or their friends

make them go bonkers

or work is a real nutty place

or their pets drive them batty

and you cause the staff to feel really coo coo.

To be a mental patient means losing your sexuality.

If you are a male, female staff can walk in on you any time,

in bed, in the shower, in the bathroom.

If you are a female, male staff can walk in on you any time,

in bed, in the shower, in the bathroom.

You are not male and you are not female.

You are a label, a disease, a hospital number, a condition, a non-person.

The label must not feel, must not express.

Humanity is gone.

You are reduced to a non-feeling, non-sexual, non-spiritual non-thing.

To be a mental patient is

to talk with god - and be told that is wrong

because you talk to god on Monday and not just on Sunday and

god talks back to you.

To be a mental patient means

you have to be a child

making toys in occupational therapy,

playing in recreational therapy.

Even the air you breathe

must be paid for because it is

milieu therapy.

To be a mental patient means

to have been battered and abused

by family, friends and society

and then to be told,

you are crazy and then,

to be battered and abused some more by the system.

To be a mental patient means that you take drugs

even though you have been told through other media

to just say NO!

To be a mental patient means that drugs are treatment.

Talk doesn't matter.

A job doesn't matter.

A home doesn't matter.

A family doesn't matter.

Bad side effects don't matter.

Death doesn't matter.

The psychiatrist who has never taken the drugs matters.

The psychiatrist knows best.

The psychiatrist who has never lived inside of your skin is always right.

Even when it hurts.

The drugs are treatment and if you don't take them you are BAD

and you are WRONG and you must need to be locked up

and not allowed to say, see or do anything for yourself

because you wouldn't comply with the treatment.

To be a mental patient means that

you are no longer a citizen of this great land.

To be a mental patient means that you no longer are entitled

to life, liberty and the pursuit of happiness.

You surrender your freedom of speech,

your freedom of expression,

your freedom to chose what is right for you.

To be a mental patient is to have

everyone but you know what is best for you.

To be a mental patient means that

you can't say what I've just said

because it might offend a psychiatrist.

To Be a Mental Patient (the Original)

To be a mental patient is to be stigmatized, ostracized, socialized, patronized, psychiatrized.

To be a mental patient is to have everyone controlling your life but you. You're watched by your shrink, your social worker, your friends, your family. And then you're diagnosed as paranoid.

To be a mental patient is to live with the constant threat and possibility of being locked up at any time, for almost any reason.

To be a mental patient is to live on $82 a month in food stamps, which won't let you buy Kleenex to dry your tears. And to watch your shrink come back to his office from lunch, driving a Mercedes Benz.

To be a mental patient is to take drugs that dull your mind, deaden your senses, make you jitter and drool, and then you take more drugs to lessen the "side effects."

To be a mental patient is to apply for jobs and lie about how you've spent the last few months or years, because you've been in the hospital, and then you don't get the job anyway, because you're a mental patient.

To be a mental patient is to watch TV and see shows about how violent and dangerous and dumb and incompetent and crazy you are.

To be a mental patient is not to matter.

To be a mental patient is never to be taken seriously.

To be a mental patient is to be a resident of a ghetto, surrounded by other mental patients who are as scared and hungry and bored and broke as you are.

To be a mental patient is to be a statistic.

To be a mental patient is to wear a label, a label that never goes away, a label that says little about what you are and even less about who you are.

To be a mental patient is never to say what you mean, but to sound like you mean what you say.

To be a mental patient is to tell your psychiatrist he's helping you, even if he's not.

To be a mental patient is to act glad when you're sad and calm when you're mad.

To be a mental patient is to participate in stupid groups that call themselves therapy -- music isn't music, it's therapy; volleyball isn't a sport, it's therapy; sewing is therapy; washing dishes is therapy.

To be a mental patient is not to die -- even if you want to -- and not to cry, and not to hurt, and not to be scared, and not to be angry, and not to be vulnerable, and not to laugh too loud -- because, if you do, you only prove that you are a mental patient -- even if you are not.

And so you become a no-thing, in a no-world, and you are not.

Rae Unzicker 6/84

D r a f t

Draft Principles of Consumer-Driven Care

These principles are stated in the affirmative to set forth an ideal to which systems should strive rather than being indicative of steps to be taken toward a positive direction.

Consumer-Driven Definition

Consumer-driven¹ means consumers have the primary decision-making role regarding the mental health and related care that is offered and the care received. In addition, the consumer voice is paramount in determining all aspects of care for consumers in the community, state, and nation. The consumer voice must be present and fully represented both collectively and individually with regard to all aspects of service delivery from planning to implementation to evaluation to research to defining and determining outcomes. This includes, but is not limited to the policies and procedures governing systems of care, choosing supports, services, and providers; setting goals; designing and implementing programs; monitoring outcomes; and determining the effectiveness of all efforts to promote mental health and wellness.

¹ The term "consumer" as used in this document is used for the sake of brevity and should be understood to mean people who are receiving or have received mental health services either voluntarily or involuntarily and in that context, "consumer" is intended to include people who consider themselves as survivors, ex-patients, ex-inmates, clients, users or other similar terms. Mental health services includes vocational rehabilitation, employment services, housing services, social security and other services that are designed to be supportive of a person living their life to the fullest in the community of their choice.

Guiding Principles

1. When communities, states, or the federal government design policies affecting the mental health care for consumers, the following principles must be honored:

a. Consumers are the primary authors and decision-makers in developing policies affecting local, state, and national mental health service delivery. All meetings and p reliminary discussions about the scope of policy design efforts involve consumers. Consumers outnumber government staff, contractors and secondary stakeholders (non-recipients of mental health services) and are the first and primary stakeholder.

b. As primary authors and decision-makers, consumers are compensated with comparable wages paid to other staff and service providers. Public entities lead the way in hiring consumers thereby setting an example for private business.

c. Input from consumers is meaningful beyond mere tokenism. Internal meetings including only government employees and providers or their contractors, and excluding consumers are discrimination and contrary to the ideals that define consumer-driven.

2. Consumers are given accurate, understandable, and complete information necessary to make informed, consensual choices regarding services and/or supports. Information will be provided in a language and method/format the consumer is able to understand.

3. Consumers organize to collectively use their knowledge and skills as an engine for systems transformation.

4. People who provide services and/or supports embrace the concept of sharing information, decision-making authority and responsibility for outcomes with consumers. Community organizations, states, and the federal government ensure that providers are trained by consumers on culturally competent shared decision-making, and consumer culture.

5. Providers take the initiative to change practices from provider-driven to consumer-driven care and support the new role of consumer-provider partnership. Community organizations, states, and the federal government ensure that providers are trained by consumers on the meaning and benefits of consumer-driven care.

6. Administrators allocate resources, staff, training, and support resources to make consumer-driven practices work at the point where services and supports are delivered to consumers.

7. Consumers and consumer-run organizations engage in culturally competent peer support activities to reduce isolation and strengthen the consumer voice, with targeted outreach to include the voice of consumers in diverse ethnic and special population communities.

8. Consumers are treated with dignity and respect and within the full contexts of their lives, including awareness and sensitivity to culture and cultural worldviews, language, sexual orientation, housing and employment preferences, social and economic status, religious preferences, political opinions and other life choices.

9. Commitment to cultural competence is evident in all consumer-driven strategic planning, policy and program development.

10. Services are culturally and linguistically appropriate, with sensitivity to historical, cultural and religious experiences of diverse populations.

11. Programs eliminate disparities for cultural, racial and ethnic consumer populations.

12. Services to cultural, racial and ethnic consumer groups include and value the concept of inter-relational approaches that may embrace participation of extended family, tribes and other natural self-determined definitions of community inclusiveness.

13. Consumer driven approaches recognize the diversity of beliefs and values held by different racial/ethnic and cultural communities. Recognizing different world views of the concepts of interdependence vs. independence, self-sufficient, self-determined vs. person in their community, and embrace the diversity of values in definition of consumer-driven and self-determination.

14. Prejudice, racism, discrimination, and stigma are not accepted at any level.

15. Consumers are entitled to the full enumeration of rights as listed in the Universal Declaration of Human Rights.

16. Consumers lead, control, exercise choice over, and determine their own path of recovery by maximizing autonomy, self-agency, and independence.

Characteristics of Consumer-Driven Care

1. Consumers' experiences, their visions and goals, their perceptions of strengths and needs, and their guidance about what makes them comfortable, steers decision making about all aspects of service and system design, operation, research and evaluation.

2. Meetings and service provision occur in culturally and linguistically competent environments. Consumers' voices are heard and valued, everyone is respected and trusted, and it is safe for everyone to speak honestly.

3. Administrators and staff actively demonstrate their partnerships with all consumers by sharing power, resources, authority, and control with them.

4. Consumers have full access to useful, understandable information and data in their primary language, as well as sound professional expertise so they have good information to make decisions.

Universal Declaration of Human Rights

PREAMBLE

Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,

Whereas disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind, and the advent of a world in which human beings shall enjoy freedom of speech and belief and freedom from fear and want has been proclaimed as the highest aspiration of the common people,

Whereas it is essential, if man is not to be compelled to have recourse, as a last resort, to rebellion against tyranny and oppression, that human rights should be protected by the rule of law,

Whereas it is essential to promote the development of friendly relations between nations,

Whereas the peoples of the United Nations have in the Charter reaffirmed their faith in fundamental human rights, in the dignity and worth of the human person and in the equal rights of men and women and have determined to promote social progress and better standards of life in larger freedom,

Whereas Member States have pledged themselves to achieve, in cooperation with the United Nations, the promotion of universal respect for and observance of human rights and fundamental freedoms,

Whereas a common understanding of these rights and freedoms is of the greatest importance for the full realization of this pledge,

Now, therefore,

The General Assembly

proclaims

This Universal Declaration of Human Rights, as a common standard of achievement for all peoples and all nations, to the end that every individual and every organ of society, keeping this Declaration constantly in mind, shall strive by teaching and education to promote respect for these rights and freedoms and by progressive measures, national and international, to secure their universal and effective recognition and observance, both among the peoples of Member States themselves and among the peoples of territories under their jurisdiction.

Article I

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Article 2

Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property , birth or other status.

Furthermore, no distinction shall be made on the basis of the political, jurisdictional or international status of the country or territory to which a person belongs, whether it be independent, trust, non-self-governing or under any other limitation of sovereignty.

Article 3

Everyone has the right to life, liberty and security of person.

Article 4

No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms.

Article 5

No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

Article 6

Everyone has the right to recognition everywhere as a person before the law.

Article 7

All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination.

Article 8

Everyone has the right to an effective remedy by the competent national tribunals for acts violating the fundamental rights granted him by the constitution or by law.

Article 9

No one shall be subjected to arbitrary arrest, detention or exile.

Article 10

Everyone is entitled in full equality to a fair and public hearing by an independent and impartial tribunal, in the determination of his rights and obligations and of any criminal charge against him.

Article 11

(1) Everyone charged with a penal offence has the right to be presumed innocent until proved guilty according to law in a public trial at which he has had all the guarantees necessary for his defense.

(2) No one shall be held guilty of any penal offence on account of any act or omission which did not constitute a penal offence, under national or international law, at the time when it was committed. Nor shall a heavier penalty be imposed than the one that was applicable at the time the penal offence was committed.

Article 12

No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honor and reputation. Everyone has the right to the protection of the law against such interference or attacks.

Article 13

(1) Everyone has the right to freedom of movement and residence within the borders of each State.

(2) Everyone has the right to leave any country, including his own, and to return to his country.

Article 14

(1) Everyone has the right to seek and to enjoy in other countries asylum from persecution.

(2) This right may not be invoked in the case of prosecutions genuinely arising from non-political crimes or from acts contrary to the purposes and principles of the United Nations.

Article 15

(1) Everyone has the right to a nationality.

(2) No one shall be arbitrarily deprived of his nationality nor denied the right to change his nationality.

Article 16

(1) Men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family. They are entitled to equal rights as to marriage, during marriage and at its dissolution.

(2) Marriage shall be entered into only with the free and full con sent of the intending spouses.

(3) The family is the natural and fundamental group unit of society and is entitled to protection by society and the State.

Article 17

(1) Everyone has the right to own property alone as well as in association with others.

(2) No one shall be arbitrarily deprived of his property.

Article 18

Everyone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief, and freedom, either alone or in community with others and in public or private, to manifest his religion or belief in teaching, practice, worship and observance.

Article 19

Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers.

Article 20

(1) Everyone has the right to freedom of peaceful assembly and association.

(2) No one may be compelled to belong to an association.

Article 21

(1) Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.

(2) Everyone has the right to equal access to public service in his country.

(3) The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and genuine elections which shall be by universal and equal suffrage and shall be held by secret vote or by equivalent free voting procedures.

Article 22

Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.

Article 23

(1) Everyone has the right to work, to free choice of employment, to just and favorable conditions of work and to protection against unemployment.

(2) Everyone, without any discrimination, has the right to equal pay for equal work.

(3) Everyone who works has the right to just and favorable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection.

(4) Everyone has the right to form and to join trade unions for the protection of his interests.

Article 24

Everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay.

Article 25

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.

Article 26

(1) Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit.

(2) Education shall be directed to the full development of the human personality and to the strengthening of respect for human rights and fundamental freedoms. It shall promote understanding, tolerance and friendship among all nations, racial or religious groups, and shall further the activities of the United Nations for the maintenance of peace.

(3) Parents have a prior right to choose the kind of education that shall be given to their children.

Article 27

(1) Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.

(2) Everyone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

Article 28

Everyone is entitled to a social and international order in which the rights and freedoms set forth in this Declaration can be fully realized.

Article 29

(1) Everyone has duties to the community in which alone the free and full development of his personality is possible.

(2) In the exercise of his rights and freedoms, everyone shall be subject only to such limitations as are determined by law solely for the purpose of securing due recognition and respect for the rights and freedoms of others and of meeting the just requirements of morality, public order and the general welfare in a democratic society.

(3) These rights and freedoms may in no case be exercised contrary to the purposes and principles of the United Nations.

Article 30

Nothing in this Declaration may be interpreted as implying for any State, group or person any right to engage in any activity or to perform any act aimed at the destruction of any of the rights and freedoms set forth herein.

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