Transcript History of the Consumer/Survivor Movement

Working Well Together:
Training Individuals Who Identify as
Consumers and Family Members
for Employment in
Public Mental Health
This curriculum was written and produced by Inspired at Work for Working Well Together and was funded by
the Mental Health Services Act (MHSA) in partnership with the California Department of Mental Health.
History of the
Consumer/Survivor Movement
Sally Zinman
Learning Objectives
Define the key principles that underlie
the consumer movement.
 Identify the core tenets of the family
movement.
 Analyze the points of commonality and
difference between the two movements.

Background
 Psychiatric
care in the United States was
based upon the beliefs and existing tools
of the medical model.

Belief that individuals with a psychiatric
diagnosis could not make good decisions about
their care.

Goal was to alleviate symptoms and ensure
people behaved in socially acceptable ways.
Background

Fear and Stigma allowed society and
providers to treat people as less than
fully human.
Background

Beliefs and existing
medical options led to:



Forced commitment to
psychiatric hospitals
Forced medication,
electric shock therapy,
lobotomies, restraints
Long term stays in
locked units
“Fearful of Diagnosis”
Sybil Nobel
Exercise
Your Health Care Experiences
The Early Consumer/Survivor
Movement – 1970’s

Influenced by other civil
rights movements in
society.

Fiscally, states were
willing to spend less on
expensive hospital care.

Many patient/survivors
moved into
communities.
The Early Consumer/Survivor
Movement – 1970’s

Militant stage of the
movement

Autonomous groups;
belief in local control

No money from mental
health system

Separatist

No major outreach
Howie the Harp
Activities

Developed avenues for expressing outrage

Annual Conference on Human Rights and Against
Psychiatric Oppression held at campgrounds and
college campuses, unfunded.

Madness Network News, news vehicle for
communication.
Activities
 Small
groups—mostly on two coasts:

Network Against Psychiatric Assault

Insane Liberation Front

Mental Patient Liberation Front
Activities

Most common self-description was “psychiatric
inmate”

Self and group information and education

Support, consciousness raising groups

Landmark book published in 1978: On Our Own:
Patient Controlled Alternatives to the Mental Health
System by Judi Chamberlin
Principles


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Against forced treatment
Against inhumane
treatment—medications,
lobotomy, seclusion and
restraints, and ECT
Anti-medical model, usually
described as anti-psychiatry
Involvement in every aspect
of mental health system
Emerging concept of
consumer/survivor-run
alternatives to mental health
system
1980’s

The movement becomes
more mainstream

Monies from Mental
Health System

Early goals achieved

Time of re-engagement
with the system
Second Step Players (formed in
1985) is a theater troupe
Activities
 Department
of Mental Health funded self-help/peer
support programs.
 Federal
Government began to fund
consumer/survivor-run programs.
 Beginning
of statewide consumer-run
organizations—1983, California Network of Mental
Health Clients.
 Many
mental health system-funded trainings and
conferences; first national Alternatives Conference in
1985.
Activities




Growth of rights protection organizations—Protection
and Advocacy, Inc.
Social change from the inside as well as the outside.
More consumers/survivors sitting on decision-making
bodies.
Gains made in rights protection for consumers.
Principles

The same principles as the earlier days
are expressed in positive rather than
negative ways:
Self determination and choice
 Stigma and discrimination reduction
 Rights protections
 Self determination and choice

Principles




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Rights protections
Holistic services
Self-help/peer-support
Program Involvement in
every aspect of mental
health system—
“Nothing About Us
Without Us”
Concept of recovery
Jean Campbell
1990’s

Employment in mental health system including
management level jobs

Offices of Consumer Affairs

Increased self-help programs

Growth in self-help/peer-support programs with
system funding

Federal recognition of the importance of the
consumer/survivor movement demonstrated through
the funding of two consumer/survivor-run technical
assistance centers
1990s

Multiple training and learning opportunities

Noticeable consumer/survivor involvement at most
levels of mental health system

Consumer/survivor participation and partnership
with other constituency mental health groups

Beginning of client-run research, research on selfhelp/consumer-run programs, and consumer
researchers
1990s

Work with policy makers to
legislate and otherwise
influence policy

Ongoing advocacy gains

Described as “decade of
recovery” (Bill Anthony, 1993)
2000s

Incorporation of self-help/peer-support into system

Development of mental health services that
recognize the significance of trauma and spirituality

More diverse and inclusive consumer/survivor
movement

Creation of National Coalition of Mental Health
Consumer/Survivor Organizations
Concerns

Successful inclusion in the mental health system
threatens the loss of our consumer/survivor values.

Some advocacy losses with the push to increase
involuntary treatments such as outpatient commitment
and other forms of coercive treatment.
System Culture Change
Evidence of system culture change as a
result of consumer/survivor involvement.

Passage
of Mental Health Services Act
Voluntary
promotion of self-help/peer-support
Involvement
of consumers/survivors at all levels of
mental health system
Promotion
of recovery as a goal
System Culture Change
SAMHSA’s National Consensus Statement on
Mental Health Recovery reflects basic
consumer/survivor principles.
“We envision a future when everyone with
a mental illness will recover.”
The President’s New Freedom Commission on
Mental Health, July 2003
Sally Zinman
510-639-1335
510-644-1916 (home office)
[email protected]
Su Budd
913-205-7554
[email protected]
Gayle Bluebird
352-525-3195 (home office)
352-219-1095 (cell)
[email protected]
http://www.promoteacceptance.samhsa.gov/
Exercise
Client/consumer Bill of Rights
History of the Family Movement
Background

Two types of family groups

Families/parents with adult children with
psychiatric disorders.

Families/parents/caregivers of minor
children with emotional, behavioral and
mental health challenges.
Background

Parents of Adult Children Movement inspired
by:

Blaming of parents for their children’s mental
health issues.

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

Schizophrenic Mother
Lack of access/influence to professionals making
decisions about care.
Confidentiality rules that kept parents out of
information loop.
De-institutionalization
Background

Parents/Caregivers of Minor Children
Movement inspired by:
Lack of control over care
 Blaming of parents
 Need for family support
 Inappropriate care provided by the system

Background

Lack of focus on
family unification

Fragmented and
uncoordinated
services
Three Major Family Groups

National Federation of Families for
Children’s Mental Health

National Alliance of the Mentally Ill.

National Mental Health Association (now
Mental Health America)
Similarities Across All Groups
Advocacy
 Family Support
 Research
 Public Awareness/anti-stigma

National Federation of Families



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Focus on family
advocacy
Have been successful in
incorporating family
decision-making into
treatment decisions
Provide self-help
Encourage family
providers in the system
National Alliance of the Mentally Ill
Began in 1979
 Emphasis on most severely affected
individuals is unique among the three
groups
 Have been successful in advocating for
research to support a brain-based
etiology.


This has caused some friction with the
consumer movement
National Alliance of the Mentally Ill
Public awareness campaign/anti-stigma
 Gained federal and private support for
improved community based services
 Has campaigned for parity

Mental Health America
Pioneer in mental health advocacy
 Effective in strengthening the child
mental health movement in the 1980’s
and 1990’s
 Focus on all age ranges and degree of
disability

Mental Health America

Seeks wellness for a
healthy nation
 Views issues as
essentially related to
social justice
System Culture Change

Evidence of change as a result of the
family movement:
Families are partners in decision-making
 Focus on family-driven, child-centered care
 Parity in insurance coverage
 Emergence of culturally relevant care
 Statewide members on boards, committees
and legislative groups

Exercise
Family and Child Bill of Rights