National Coalition of Mental Health
Consumer/Survivor Organizations

Mission: The National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) will ensure that consumer/survivors 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.

National Coalition Holds its 4th Annual Meeting in Omaha

On October 29, 2009 The National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) held its 4th annual meeting in Omaha, Nebraska. Over 125 people were in attendance from across the US.

Click here to read the complete meeting report. (PDF, 52KB, 3 pages)

Health Care Reform: Challenges and Opportunities for Behavioral Health Care Reform

Daniel Fisher and former First Lady Rosalynn Carter at the
25th Annual Rosalynn Carter Symposium on Mental Health Policy
held at The Carter Center in Atlanta Nov. 5-6, 2009.

More than 150 mental health advocates, policy-makers, practitioners, educators, and researchers convened at the symposium to discuss “Health Care Reform: Challenges and Opportunities for Behavioral Health Care Reform.” Dr. Fisher presented on the topic of comparative effectiveness research in mental health. He drew on personal lived experience as well as research carried out at the NEC. He pointed out the importance of integrating persons' lived experience into any research into recovery and wellbeing. He emphasized that participatory, qualitative, action research is best suited to gathering evidence as to the most effective means of assisting people to recover. For more information on the symposium, please visit www.cartercenter.org.

Campaign for Mental Health Reform

At the Campaign for Mental Health Reform dinner, March 18, 2009 were: (L to R) Dan Fisher, First Lady of Massachusetts Diane Patrick, Lauren Spiro, and First Lady of Colorado Jeannie Lewis Ritter

On March18, 2009, the Campaign for Mental Health Reform held its annual dinner in Washington, DC, to present awards to Senator Mike Enzi (R-WY), Representative Pete Stark (D-CA) and the First Lady of Massachusetts, Diane Patrick, who has been very honest about her battle to overcome depression. Many grateful words and warm wishes for a speedy recovery were given to mental health and healthcare champion Senator Edward Kennedy, who was receiving medical treatment in Florida on this celebratory evening.

The National Coalition's Annual Meeting was held October 30, 2008, in Buffalo, NY

Click here to view some of our accomplishments in the past year (PDF, 14 pages, 193KB)

Speaking Up and Speaking Out for Mental Health in the Washington, DC Metropolitan Region: A Call to Action

On September 16, 2008, NCMHCSO brought together 150 consumer/survivors, advocates, providers, and administrators from Washington, DC, Maryland, and Virginia whose collective knowledge and experience resulted in a report that highlights 6 goals with recommendations to transform mental health care in the DC Metropolitan region.

"It was inspiring to see so many people giving their voices towards transforming not only mental health services but society itself." — Conference participant

[Click for full report (PDF, 8 pages, 181KB)]

Senator Tom Harkin, of Iowa, shares a special time with Dan Fisher, Rachel Freund, and Lauren Spiro at the Presidential Forum in Columbus Ohio, July 26, 2008.

This Forum featured the 2008 Presidential Candidates. John McCain and Senator Harkin, who served as the surrogate for Barak Obama who was in the middle east, presented their visions for the future of disability policy in America followed by questions by Judy Woodruff (news anchor and journalist for "The News Hour with Jim Lehrer". [Click here to view the archived webcast of this historic event]

WASHINGTON, DC – April 16, 2008

Dan Fisher shares with Senator Kennedy how grateful the mental health community is that the Senator has helped the recovery of consumers through his work on health care reform and parity. They were at the Campaign for Mental Health Reform's Gala Dinner.

SANTA FE, NM - March 14, 2008 - Participants in the session on the National Healthcare Address include from right to left: Tommy Thompson, Lauren Spiro and Andrew Kessler, hidden behind the podium is Ron Mandershied

March 14, 2008 (Santa Fe, NM)  Tommy G. Thompson, independent chairman of the Deloitte Center for Health Solutions, former Health and Human Services (HHS) secretary and four-term governor of Wisconsin, addressed the need to significantly redesign our healthcare deliver system which spends 80% of our healthcare dollars on chronic illnesses. He said that wellness and prevention is where we need to go and he detailed ideas for systems change.

Lauren Spiro introduced the National Coalition of Mental Health Consumer/Survivor Organizations whose membership is growing and currently includes 30 consumer-run statewide organizations and four national consumer-run technical assistance centers. She invited the audience to contact their statewide group and for those from a state that doesn't yet have a statewide network, she encouraged them to offer support and resources to develop a network.  With this coalition, we can all work together collaboratively to turn this rusty old battleship around and create a system that meets the real needs of real people.

Andrew Kessler introduced Friends of SAMHSA which partners with local groups across the country to increase awareness and education of mental health and substance use issues and the great work being done at the federal level.

Ron Manderschied, PhD, Director of Mental Health and Substance Use Programs for Constella Group, NC, directed the entire summit and kept us focused on increasing awareness, having planning discussions and making commitments to take action. The American College of Mental Health Administrations’ convenes diverse leaders to promote leadership development, contribute to a shared vision for behavioral health administration, and facilitate the implementation of strategic recommendations for change.

The three day Summit ended with participants sharing the actions they would take. Ms. Spiro shared a number of ideas and said “the most important thing is that I will continue to advocate that people with the lived experience of recovery and their families will be at the head table. We will continue to move towards eliminating the oppressive policies, practices and attitudes that contribute to spiraling healthcare costs, unnecessary suffering and premature death. I hope at next years’ summit to hear from more consumers and families about successful, innovative programs.

[Click to view full story with larger image]

For more of Ms Spiro’s recommendations, which were shared at the summit, click here.

Our second annual face-to-face meeting in St. Louis, Missouri, October 12, 2007

National Coalition Policy Priorities for 2008

A list of possible priorities for the National Coalition was created by those attending the October 12, 2007 annual meeting in St. Louis. After the meeting, a list of priorities to be voted on was sent to coalition members. The results of the vote determined the priorities for 2008. The top ranked priority is: Adequate funding and organizing of peer-run networks and services in every state through Federal Block grants and other funding to go directly to consumer-run statewide organizations/coalitions to ensure sustainability.

View Policy Priorities for 2008 - Download PDF (85KB, 1 page)

Senator Chris Dodd (D-CT) and Lauren Spiro (National Coalition Policy Director)

NATIONAL FORUM ON EQUALITY, OPPORTUNITY & ACCESS

On November 2, 2007, the National Coalition of Mental Health Consumer/Survivor Organizations, along with more than 20 other national disability rights organizations, co-hosted the Presidential Candidates’ Forum: A National Forum on Equality, Opportunity and Access, in Manchester, New Hampshire. This historic, day-long event featured presidential candidates speaking on disability issues and answering questions from the audience.

“You could feel the excitement in the auditorium on this historic day that brought together unprecedented numbers of cross-disability groups with most of the presidential candidates,” said Lauren Spiro, the National Coalition’s policy director. “There were over 500 people and over 30 television cameras there, with Ted Kennedy Jr. moderating. The first speaker, Senator Hillary Rodham Clinton, electrified the room,” Spiro said.

“Many speakers shared inspiration and visionary words. Some brief highlights: Senator Dodd asked, ‘What are we doing on our watch for the next generation? What kind of world are we creating? We are failing to live up to our promises . . . We can all make a difference.’ Senator Biden said, ‘Show me your budget and I will tell you what you value … the essence of what it means to be a human being – it’s about personhood … It’s time for us to demand the dignity we deserve . . . Be a part of something bigger than ourselves…Are we keeping up with what we aspire to? . . . You are the kite strings of our ambitions.’

“Ted Kennedy Jr. said, ‘We must end social and political isolation. It is not the disability but society’s perception that is the most disabling condition.’ ” The event was covered by television and was Webcast live.

Click to view transcript of the presidential candidate's speeches from 7:30 a.m. to 3:30 p.m. (pdf, 95 pages, 491kb

President Obama Proclaims International Day of Persons with Disabilities

This year, in an effort to renew our global commitment to human rights and fundamental freedoms for persons with disabilities, the United States became a proud signatory of the United Nations Convention on the Rights of Persons with Disabilities. This treaty represents a paradigm shift, urging equal protection and benefits for all citizens, and reaffirming the inherent dignity and independence of the 650 million people living with disabilities worldwide. Today, as we commemorate the International Day of Persons with Disabilities, we celebrate the skills, achievements, and contributions of persons with disabilities in America and around the world. We recognize the progress we have made toward equality for all, and we rededicate ourselves to ensuring individuals with disabilities can reach their greatest potential. [To read full proclamation, click here]

NCMHCSO Contributes to
Medicaid Reform Efforts

L to R: Ari Ne'eman, James Conroy, Lauren Spiro, Daniel Fisher, Amy Goodman, Tom Nerney, Eli Cohen

On November 3, Representatives of the National Coalition of Mental Health Consumer/Survivor Org. (NC), Lauren Spiro and Daniel Fisher, as well as Andy Imparato (AAPD), Kelly Buckland (NCIL), Mike Oxford (ADAPT), Ari Ne'eman (Autistic Self-Advocacy Network), Tom Nerney (Center for Self-Determination) and several other advocates met with Cindy Mann, Director of Center for Medicaid and State Operations, CMS, Susan Hill, Linda Peltz, Melissa Harris and several other CMS officials to discuss specific ways that CMS could further Olmstead and recovery in mental health. This meeting was a follow-up to a July meeting that the advocates held with Director Mann. Lauren Spiro and Daniel Fisher presented recommendations for Medicaid reform of mental health. [Click to view the recommendations (PDF, 111KB, 4 pages)]

On November 20, 2009, CMS sent a letter to state Medicaid directors providing guidance on self-directed personal assistance services. [Click to read the letter]

Disability Leadership Meet With White House Staff on Health Reform

Dan Fisher, Andy Imparato, Ari Ne'eman, Marty Ford, Suellen Galbraith, Bob Williams, Kelly Buckland, and Mike Oxford outside the White House after meeting with Health Reform Staff.

On August 27, 2009 as a follow-up to the meeting that President Obama had with disability community representatives on July 24, a group of advocates for home and community-based long-term services and supports met with Nancy-Ann DeParle and other senior staff at the White House to discuss the Community First Choice - Option. [Click to view full story...]

National Coalition Mourns the Death of Senator Edward M. Kennedy

WASHINGTON (8/26/09) – The National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) deeply mourns the death of Senator Edward M. Kennedy, an ardent and lifelong champion of the rights of people with disabilities and of all Americans.

Sen. Kennedy understood to his very core the importance of involving all Americans – including people who are homeless, people living in poverty, people with physical and/or psychiatric disabilities, [Click to view press release...]

National Coalition invited to historic signing of the UN Convention on the Rights of Persons with Disabilities

Washington DC, July 24, 2009

Daniel Fisher, M.D., Ph.D., represented the National Coalition of Mental Health Consumer/Survivor Organizations at President Obama's historic signing of (the commitment to sign) the UN Convention on the Rights of Persons with Disabilities. The actual signing will be carried out at the UN on July 30 by the President’s special assistant Valerie Jarret. Daniel Fisher wrote the following note to the White House Office of Public Engagement which conducted the event: [Click to view] [Visit www.whitehouse.gov/ope]

Justice For All Action Network at the White House

Last week, the Steering Committee of a new national disability-led coalition called the Justice for All Action Network (JFAAN) met for an hour with two senior White House officials to discuss some of our common policy priorities.

Attending for the White House were Kareem Dale, Special Assistant to the President for Disability Policy; and Jeff Crowley, Director of the National AIDS Office and senior adviser on disability issues within the Domestic Policy Council. Attending for JFAAN were [Click to view full story...]

Listening to Madness

Why some mentally ill patients are rejecting their medication and making the case for 'mad pride.'

They Don't Want To Be Normal
Click to view artworks by the "mad pride" movement

We don't want to be normal," Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn't take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still. [Click to view full NEWSWEEK article published May 2, 2009]

John Podesta, Obama's Transition Team Co-Chair meets with Dan Fisher
Shares views on Health Care Reformm

Dan Fisher met with Barak Obama's Transition Team Dec. 22, 2008 to discuss health care reform, and presented a statement on behalf of the NCMHCSO Steering Committee.

Click to view Statement to the Obama Health Care Transition Team (PDF, 2 pages, 18KB)

NCMHCSO Reps meet with the Obama Transition Team

Daniel Fisher, Jim McNulty, Ken Wireman and Effie Smith

President-elect Barack Obama's transition team invited representatives from NCMHCSO and two other organizations to meet on Wednesday December 17, in Washington, DC.

Kareem Dale, the disability coordinator/liaison in the transition team's Public Liaison and Intergovernmental Affairs Department, and Sharon Lewis, a member of its Education Agency Review Team, who met with us, have been meeting organizations from various parts of the disability community. These meetings are in keeping with Obama's plan for a transparent government and transition process.

[Click to view full story including: Mental Health Policy Proposals to the Obama Administration]

Advocacy, Disability Groups Call For Reform Of Public Mental Health System

Tragedies In Psychiatric Hospitals Prompt Call For Peer Recovery, Wellness Centers

A national coalition of disability and advocacy groups is calling on the incoming Obama administration and leading mental health officials to implement widespread reforms in the country's mental health treatment system that would include identifying and funding pilot programs to demonstrate best practices in psychiatric emergency, inpatient and community-based care.

The move is prompted by the influx of recent news reports about the failure of psychiatric hospital staff to respond promptly to patients with serious mental illness.

[Click for full article (from Mental Health Weekly, Vol. 18, No. 46 December 8, 2008)]

Mental-health parity law
a big win for Kennedys

Tucked into the Wall Street bailout bill was a breakthrough for the estimated 113 million Americans suffering from mental illness - a provision making it illegal for health insurance companies to discriminate against patients suffering from psychological or behavioral disorders. [Click to view article at Boston Globe]

Leading Business Magazine Forbes Honors Local Advocates in International Fundraiser

Freedom Center (MA) chosen as Forbes Charity of the Month in September

Forbes, a leading international business magazine, has chosen the Northampton, MA based Freedom Center, an alternative mental health organization run by and for people diagnosed with psychiatric disorders, to be featured as their charity of the month in September.

Forbes is highlighting the Freedom Center's work through its website www.forbes.com. Included in Forbes' 'Philanthropic Pitch" campaign to support Freedom Center is a five-minute video and a written story about one of Freedom Center's Co-Founders, Will Hall.

[View article at Forbes Magazine. (Direct link to video)]
[Visit the Freedom Center at www.freedom-center.org]

Rachel Freund, Policy Advocate Coordinator for the Pennsylvania Mental Health Consumers' Association, at an April Fool's Day Rally in Harrisburg to Raise the Personal Needs Allowance for 9500 Pennsylvanians (most of them mental health consumers) who live on $60 per month. "Living on $60 is No Joke!"

Mobilizing Our Community as a Culture of Voters

"The vote is the most powerful instrument ever devised by man for breaking down injustice and destroying the terrible walls which imprison men because they are different from other men." – Lyndon Johnson

Voting does more than elect politicians. Through the act of voting, people become dynamic players in the political arena where policy decisions are made and both their political and personal power grows. They become active citizens, connected with the community of voters.

Unfortunately, according to US Census data, people with disabilities, including mental health disabilities, are 15% less likely to be registered to vote and 20% less likely to vote if registered. The issue of mobilizing our community as a 'culture of voters' is multi-faceted and requires a comprehensive approach to remedy. As an organizer focusing on cross-disability advocacy and citizen participation over the past six years, I've been fortunate to work with a community of skilled advocates.  Here are three steps we have learned can get results...
[For full story by Rachel Freund click here]

Terrific Interview with two of our heroes, Sally Zinman and Jay Mahler by the Rev. Barbara F. Meyers the producer of a public access TV show called Mental Health Matters - Alameda County. The half-hour shows focus on various aspects of mental health. In June 2008 they focused on the Consumer Movement. [Click to view video]

Washington, DC, March 28, 2008.

Harvey Rosenthal Addresses the Association of Health Care Journalists

Harvey Rosenthal, executive director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS) discussed how the overemphasis on violence has skewed public perceptions, and that services and programs that actively engage people in a recovery process have received far too little public notice.  Click image to [View video at www.miwatch.org]

WASHINGTON, DC – March 13, 2008

NCMHC/SO Steering Committee member Peter Ashenden testifies before US House of Representatives'

National Coalition of Mental Health Consumer/Survivor Organization's Steering Committee member Peter Ashenden testifies before US House of Representatives' Labor, Health and Human Services, Education, and Related Agencies (LHHS) Sub- committee."

Click for more information

National Association of Peer Specialists (NAPS) 2007 Survey Report Now Available

The National Association of Peer Specialists (NAPS) 2007 Survey Report results describes the variety of tasks peer specialist perform, how satisfied they are with their work, compensation levels, outlook for the future and what motivates workers.

Click for the full report (Word Document, 87KB).

The National Coalition addresses Promoting Wellness on the Individual Level

An excerpt from the SAMHSA/CMHS Wellness Summit focused on reducing co-morbidity and early mortality of people with mental illness. Rockville, Maryland, September 17-18, 2007...

Each individual's life depends on the society they live in and the services and supports that are available to them. To frame the co-morbidity and early mortality rate as simply a medical issue is not only inaccurate but an injustice to everyone. The problem of co-morbidity and early mortality is an indicator of a broken system within a broken society. The coalition was formed because the survival of our brothers and sisters is being threatened by the oppressive policies, services and attitudes of the system and of society. We die young because we have no hope. We die young because our dreams have been crushed. We die young because our voice is neither heard nor understood. We die young because many of us live in poverty, and some of us live on the streets. We die young because our physical health needs are routinely ignored, often because any problems we have are attributed to our mental illnesses. (click for entire talk)

NEWS RELEASE

Countering Discrimination and Stigma by Promoting Mental Health Recovery and Resiliency

Also available in downloadable pdf format (120kb, 2 pages)

May 3, 2007 - The National Coalition of Mental Health Consumer/Survivor Organizations is a coalition of people with psychiatric diagnoses¹ who counter stigma and discrimination through the evidence of their recovery².

KEY POINTS

• Research shows that people recover from mental illness/severe emotional distress.
• People who have psychiatric histories must be included in discussions concerning them just as other groups are included when decisions are made about them.
• The mental health community needs to focus on wellness promotion and programs that support recovery and resiliency.

RECOVERY AND TRAUMA

• Trauma—such as bullying, physical and sexual abuse, exposure to violence or natural disaster, physical and emotional neglect, and general disrespect of people who appear different or odd—plays a major role in the development of emotional distress and the diagnosis of mental illness.

[Click for more]

National Coalition of People with Psychiatric Histories Responds to Virginia Tech Tragedy

WASHINGTON (4/20/07) – The National Coalition of Mental Health Consumer/Survivor Organizations, an organization of people with psychiatric histories, asks that everyone learn from the tragic events at Virginia Tech, in which a student was responsible for 33 deaths, including his own.

"We offer sincere sympathy to the families and friends of those killed and injured, including the family of Cho Seung Hui, as well as the entire Virginia Tech community," said Lauren Spiro, the Coalition’s director of public policy. “We urge everyone to think compassionately about how to better engage people who are isolated, severely distressed, fearful and/or confused.”  [Click for more]

Contemporary American psychiatry has been dealt a shattering blow by no other than one of the most influential psychiatrists in academia

Dr. Nancy Andreasen, Director of mental health clinical research at the University of Iowa, the editor of the American Journal of Psychiatry, and author of 500 publications... describes the "biological revolution" in psychiatry, has delivered a devastating blow to American psychiatry. In her critical article in the Schizophrenia Bulletin, Dr. Andreasen makes some astounding acknowledgements--including the fact that American psychiatry is a veritable wasteland [Click here for full story]

WASHINGTON, D.C. – Mental health consumer/survivors have formed a national coalition to ensure that they play a major role in the development and implementation of health and mental health care and social policies at the state and national levels.

“The creation of the National Coalition of Mental Health Consumer/Survivor Organizations (NCMHCSO) is a milestone,” said the group’s Director of Public Policy, Lauren Spiro. “The formation of this Coalition takes us to the next level- it enables us to raise our collective voice, based on our experience of mental health recovery, and be heard at the seat of power. The Coalition embraces the disability movement’s motto, ‘Nothing about us without us.’ ” The Coalition will collaborate with other advocacy groups to ensure that consumer rights policies continue to move towards promoting full participation and integration in the community.

The rapidly growing Coalition currently consists of organizations run by consumers representing 28 states and the District of Columbia, including representatives from the three consumer-run national technical assistance centers: the Consumer Organization and Networking Technical Assistance Center, the National Empowerment Center, and the National Mental Health Consumers’ Self-Help Clearinghouse.

The Coalition supports the efforts of the federal Substance Abuse and Mental Health Services Administration (SAMHSA) to transform the mental health system to one that is recovery-based and consumer- and family-driven, and supports SAMHSA’s consensus statement on recovery (www.mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/). The Coalition proposes a new consensus for the mental health field based on the following principles:

• Recovery: Recovery is real and possible for everyone. To recover, we need services and supports that treat us with dignity, respect our rights, allow us to make choices, and provide assistance with our real-life, self-defined needs. This range of services must include consumer-run and -operated programs.
• Self Determination: Self-determination is essential for recovery to occur. We need to be in control of our own lives.
• Holistic Choices: We need choices that meet our self-defined needs. We need a wide range of recovery-oriented services and supports to assist us in achieving our goals. These include assistance with housing, education, and career development, all of which can be consumer-run. We need these opportunities to achieve full integration into the community.
• Voice: We must have a voice in our recovery and in the policies facilitating our recovery. We are the most authentic voice in the mental health system, since mental health decisions affect every aspect of our lives. We bring our lived experience, therefore, we must be central in any dialogues and decisions about mental health issues at all levels. This is empowerment.
• Personhood: We are whole human beings and will campaign to remove stigma and discrimination. We have the same dreams as all members of the community and the ability to make our own decisions. A barrier-free community is one free from discrimination and stigma.

Member States

National Technical Assistance Center —   Steering Committee Member

States Without Color - To Be Developed - Membership status will be updated regularly

The Coalition received start-up funding from the Washington-based Public Welfare Foundation. The Coalition office is located at 1101 15th Street, NW #1212, Washington, DC 20005
 

For additional information, contact: Lauren Spiro, 877-246-9058 (Toll Free), or send email to info@ncmhcso.org

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