National Coalition of Mental
Health Consumer/Survivor
Organizations
Some Accomplishments
in Our Second Year
Web: www.ncmhcso.org Phone: 978-590-2014
Email: info@ncmhcso.org
NC Involving Consumer/Survivors as Active Citizens
In Oct 2008 the coalition was awarded a $20,000 foundation grant to integrate mental
health consumers into civil society and promote system transformation through their
exercise of active citizenship by the development & enactment of legislation to transform
the MH system.
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Emotional CPR (eCPR)
The National Coalition is developing eCPR, a peer-developed educational program for
the general public designed to teach individuals to assist people through an emotional
crisis by three simple steps of C=Connecting, P=emPowering, and R=Revitalizing. eCPR
is based on the principles of trauma-informed care, counseling after disasters, peer
support for recovery from mental health problems, emotional intelligence, suicide
prevention, and cultural attunement. The eCPR Advisory Board provides feedback for the
education and training materials being developed for this public health initiative.
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Teach in and Speak Out for Mental Health
in the DC Metropolitan Region
September 16, 2008, Washington, DC
This was the coalitions first grant funded statewide/regional organizing effort.
Then the 150 participates decided on 10 Speak Out Groups: Multi-cultural; Recovery
Education/Peer Support; Medicaid; Trauma Informed Care; Criminal Justice;
Homelessness and Housing; Gay, Lesbian, Bisexual and Transgender (GLBT) issues;
Cross Disability; Economic Empowerment/Anti-Poverty; and Spirituality and
Motivation. Each group formulated and then shared with everyone their
recommendations to transform mental health care in the Washington, D.C. Metropolitan
Region so that the consumer/client voice is heard and so that we can better meets the real
needs of people. A report will be written. This project was made possible by a grant from
the Consumer Health Foundation.
~~~
Influencing Block Grant Policy to Fund Consumer-run
Statewide groups
Several coalition members met with SAMHSA staff (including the Branch Chief for
Mental Health State Planning and Systems Development). One outcome of the meeting
was that in August 2008 we submitted recommendations to the mental health block grant
Guidelines & Prompts that states use. These recommendations were focused on increased
consumer input and involvement at all levels and increased accountability and
transparency.
Some of the recommendations we submitted are below.
Persons who conduct the reviews for the MHBG should get a copy of the draft report
before it is submitted and also get a copy of the final report.
Copies of the final report should be made available to broad stakeholders, including
programs, organizations and people who were reviewed or interviewed during site
visits.
When possible and to the extent feasible, representatives from statewide consumer-run
organizations should be represented on the MH Planning Council. Most states have
consumer-run statewide organizations and these organizations should be involved in MH
Planning Council activities. For states that do not have consumer-run statewide
organizations, efforts should be made to outreach and engage consumer-leaders in the
MH Planning Council.
MH Planning Councils should allocate resources to increase knowledge, skill
development, access, and funding to ensure that consumers have the training and support
needed to enhance their involvement in the MH planning process.
MH Planning Councils should allocate a significant portion of their funds to consumeroperated initiatives, programs or organizations
Transformation Activities (Recommendations continue)
The States should be guided to show leadership in accountability in demonstrating
consumer involvement in transformation activities. What is the state doing to enhance the
meaningful contribution of consumer involvement in transformation? What plans,
initiatives or actions are underway to ensure that consumers have the knowledge, skill
development, access, resources, support, and time to contribute to the conversation. What
is the state doing to enhance the ability of consumers to ‘drive’ systems improvements?
What is the state doing to encourage the development of consumers’ empowerment and
advocacy skills?
Recommendations Regarding Monitoring Prompts:
Interviews or other assessment methods should be anonymous to encourage honest
responses. At least some assessments are not conducted in private which has resulted in
pressure to selectively over-state positive information or else risk losing funding.
Consideration should be made to conducting reviews in a focus group format, particularly
when soliciting feedback from consumers. These reviews should be done without staff
present and with at least two of the reviewers.
What is the state doing to enhance the meaningful contribution of consumer involvement
in systems transformation? What plans, initiatives or actions are underway to ensure that
consumers have the knowledge, skill development, access, resources, support, and time to
contribute meaningfully to systems change? What is the state doing to enhance the ability
of consumers to ‘drive’ systems improvements? What is the state doing to encourage the
development of consumers’ empowerment and advocacy skills?
Describe the extent to which consumers and family members are included on Peer
Review teams?
Describe and evaluate the resources the state has put into consumer-run organizations and
initiatives including resources directed towards support for organizing, training,
advocacy, providing technical assistance, etc.
Additional prompts are needed to inquire about:
- to what extent are providers, consumers and family members familiar with the
recommendations of the New Freedom Commission?
- to what extent are providers, consumers and family members familiar with the
SAMHSA/CMHS definition and ten components of recovery?
- to what extent are providers, consumers and family members familiar with consumerrun services, organizations or coalitions in their state, other states, or nationally?
- to what extent are providers, consumers and family members familiar with the
prevalence and needs of specific populations, such as, seniors, transition aged youth,
diverse ethnic groups, individuals with cross-disabilities (eg, hearing impaired, visually
impaired, wheelchair users), etc?
Recommended additional wording (in bold): Describe specific efforts used by the State
and local entities to solicit input from consumers and family members regarding policies
and services. Describe the success or lack of success in these efforts. What next steps
are planed to enhance input from these groups?
Recommended additional wording (in bold): Describe the success or lack of success in
these efforts and plans to enhance input from these groups? Are specific outreach efforts
made to include consumers and family members who are cultural, ethnic, or linguistic
minorities? What is the success of these efforts? What next steps are planned?
Recommended additional wording (in bold): What information about performance and
quality is provided to consumers and families with specific reference to the current
provider system and managed care systems? What training is provided for
consumers/families in this area? How do you assess the value or impact of the
trainings? What next steps are planned to enhance delivery of information about
performance and quality to consumers and family members?
Recommended additional wording (in bold): Describe the methods used by the local
program to solicit input from consumers and their families regarding services provided.
What input has been received? What next steps are planned based on this input?
~~~
As a result of the following press release the Coalition’s Director of Public Policy was
interviewed by four news reporters, each of whom did a news story either based on or
inspired by the press release.
Press Release
For Immediate Release
“Mummies of the Insane” Galvanizes National Coalition of
People with Psychiatric Histories
WASHINGTON, D.C. (7/17/08) – A national coalition of people who have psychiatric
histories is demanding an end to the “sideshow” exhibition of two mummified female
cadavers, whose bodies were sold in 1888 by the West Virginia Hospital for the Insane to
an amateur scientist. The women’s corpses are on display in glass-topped coffins in the
bathroom of the Barbour County Historical Museum in Philippi, W. Va., at a dollar a
look.
“We are shocked and appalled at this barbaric exhibition and demand that the bodies of
these women be given a proper burial,” said Lauren Spiro, director of public policy for
the National Coalition of Mental Health Consumer/Survivor Organizations. “In 1989, the
Smithsonian Institution agreed to return the skeletons of thousands of Native Americans
to their tribes for burial. We demand that these women be allowed the same dignity.”
In 1888, the bodies of the two women were sold by the state hospital to Graham Hamrick
for a macabre experiment: he wanted to recreate the mummification techniques employed
by ancient Egyptians. According to a report on the Roadside America Web site
http://www.roadsideamerica.com/story/2930, the Smithsonian Institution offered to
exhibit the mummified cadavers if Hamrick would share his formula with them, but he
refused. After Hamrick’s death, P.T. Barnum took the cadavers on tour to Europe for
several years. After decades during which they experienced additional indignities, they
ended up at the museum, where they are still on display.
“Children are also being exposed to this,” said Spiro; “the Washington Post uses the
exhibit as an example in an online curriculum for kids, calling it ‘just another of
America’s roadside attractions.’
http://www.washpost.com/nielessonplans.nsf/0/5F45C0443478A04C85256ACC005C257
E/$File/colortest3.pdf This heartless exhibit is another example of the callous treatment
of people who are labeled with mental illnesses.”
The National Coalition of Mental Health Consumer/Survivor Organizations works to
ensure that people diagnosed with mental illnesses have a major voice in the development
and implementation of health care, mental health, and social policies at the state and
national levels, empowering people to recover and lead a full life in the community. The
coalition currently consists of statewide organizations run by people with psychiatric
histories in 32 states, including the District of Columbia, as well as the three federally
funded consumer-run national technical assistance centers.
Contact: Lauren Spiro, 978-590-2014 , or e-mail info@ncmhcso.org
In the Fall 2007 the coalition secured a small contract from SAMHSA/CMHS to create a
history exhibit of mental health, substance abuse and SAMHSA/CMHS. An announcement was sent out far and wide requesting contributions & suggestions for the Exhibit
Project which will be on display at SAMHSA in Rockville, Maryland. The coalition
formed an advisory committee that selected the artifacts for the exhibit. One part of the
exhibit is:
Some Highlights from the Recent History of the Mental Health Movement
This brief time table is intended to serve as a seed only of what someday will be a
comprehensive, objective record of our history. The following is based on the limited
historical knowledge of the people who created it and their priorities. Histories, that are
not widely and deeply researched, are subjective. The history of events in our movement
should come from all of us. Each of us have pieces of the puzzle which others do not
know, or haven't seen as important.
These highlights are not intended to be a complete and objective depiction of our history.
The timeline leaves out very important events that occurred nationally, statewide, and
locally which impacted our movement. Please send additional information to add to the
timeline regarding the history of our movement on local, statewide or national level to
info@ncmhcso.org. Please put in the subject line “History Exhibit”.
Early 1970’s Growth of autonomous unfunded consumer (at the time often called
“psychiatric inmate”) groups such as: Insane Liberation Front (Oregon); Network Against
Psychiatric Assault (San Francisco); Mental Patients’ Liberation Front ( Massachusetts);
Advocates for Freedom in Mental Health (Kansas);
Early 1970’s Publication of Madness Network News, “a quarterly journal of the
psychiatric inmates/anti-psychiatry movement”
1973 First gathering of North American Conference on Human Rights and Against
Psychiatric Oppression held in Detroit.
1978 On Our Own: Patient Controlled Alternatives to the Mental Health System is
published. Written by Judi Chamberlin, it becomes a standard text of the psychiatric
survivor movement.
1979 The National Alliance for the Mentally Ill is founded in Madison, Wisconsin.
1980 Congress passes the Civil Rights of Institutionalized Persons Act, authorizing the
U.S. Justice Department to file civil suits on behalf of residents of institutions whose
rights are being violated.
1981 Portland Coalition for the Psychiatrically Labeled (PCPL) organized in Portland,
Maine
1981 P.L. 97-35 Omnibus Budget Reconciliation Act created Mental Health Block Grant
Early 1980’s Consumer-Run Drop In Centers are funded
On Our Own (Baltimore, Maryland) – 1983
Berkeley Drop-In Center (California) - 1985
Ruby Rogers Drop-In Center (Massachusetts) – 1985
Oakland Independence Support Center (California) - 1986
Around 1983, Community Support Program (then under NIMH) designated self-help
programs as essential components of a model mental health system.
1983 California Network of Mental Health Clients, statewide consumer advocacy
organization, is founded.
1985 First Annual 'Alternatives' Conference in Baltimore, Maryland, funded by CMHS
International Conference on Human Rights and Psychiatric Oppression is discontinued.
1986 Madness Network News ceases publication
Congress passed the Protection and Advocacy for Individuals with Mental Illness
(PAIMI) Act of 1986 to set up protection and advocacy agencies for people who were inpatients or residents of mental health facilities.
1987 Dendron News first published in January.
First lawsuit against a shock machine manufacturer.
1988 CMP funded 13 demonstration consumer-run programs in the country.
1989 Resident patients in state and county hospitals in the U.S. drops below 100,000
Support Coalition International (SCI) founded in May
The Americans with Disabilities Act (ADA) is signed by President George Bush. It
protects the civil rights of people with disabilities, and gives some protection to people
with mental illness by stating, "services and supports must be provided in the most
integrated setting appropriate to the individual" thus advocating for community
placement for people.
1991 "Alternatives '91" conference in Berkeley, California draws over 2,000 participants
for the largest consumer/survivor conference ever.
1992 Substance Abuse and Mental Health Services Administration (SAMHSA)
established by Congress under the ADAMHA (Alcohol, Drug Abuse, and Mental Health
Administration) Reorganization Act, Public Law 102-321 on October 1, 1992. SAMHSA
includes CMHS (Center for Mental Health Services).
1993 National Association of Consumer/Survivor Mental Health Administrators
(NAC/SMHA) is founded.
1994 In April, the first class of the Consumer Service Provider Training graduates in
Contra Costa County, California. This is the first training for Community Support
Workers where the curriculum, class design and training were all implemented and taught
by other consumer/survivors with a recovery orientation.
1996 First time a shock machine manufacturer pays money to a survivor.
The Mental Health Parity Act of 1996 passed, barring insurance companies and large
self-insured employers from placing annual or lifetime dollar limits on mental health
coverage.
1999 Supreme Court rules in Olmstead v. L.C., 527 U.S. 581, that under the Americans
with Disabilities Act (ADA), undue institutionalization qualifies as discrimination by
reason of disability including people with a mental disability.
2000 The National Council on Disability (NCD) publishes, "From Privileges to Rights:
People Labeled with Psychiatric Disabilities Speak for Themselves."
SOCSI (Subcommittee on Consumer/Survivor Issues) is created as a federally supported
body to advise the CMHS (Center for Mental Health Services) National Advisory
Council on consumer/survivor perspectives and issues.
2001 NARPA held it's 20th Annual Rights Conference in Niagara Falls, New York.
2002 "...quality of life depends on a job, a decent place to live, and a date on Saturday
night." Charles G. Curie, M.A., A.C.S.W., SAMHSA Administrator.
2003 New Freedom Commission on Mental Health’s Recommendations for transforming
the mental health system including that the system be consumer and family driven.
2004 SAMHSA/CMHS National Consensus Statement on Mental Health Recovery states
that 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.
2006 The National Coalition of Mental Health Consumer/Survivor Organizations is
formed and an office is opened in Washington, D.C.
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Nothing about us without us