National Coalition News
The short film "Her Life, Our Movement" was created to honor the life and work of Judi Chamberlin, one of the founders of the international consumer/survivor movement, who passed away in January 2010. The National Coalition seeks to build support for a longer documentary project to showcase the history of our movement for civil rights and community life for people with psychiatric disabilities. Your donations towards this project are much appreciated. [Click here for more information (pdf, 381KB, 1 page)] [Please click here to contribute]
Death of Judi Chamberlin, Pioneer in Social Justice Movement, Casts Spotlight on Struggle for Rights of People with Psychiatric Disabilities
WASHINGTON (1/21/10) – The National Coalition for Mental Health Recovery (NCMHR) mourns the death of Judi Chamberlin, an internationally renowned activist in the mental health consumer/survivor movement and author of the groundbreaking book “On Our Own: Patient-Controlled Alternatives to the Mental Health System” (1978). Chamberlin, 65, died at home on January 16 after a long illness.
Since the early 1970s, Chamberlin worked tirelessly to create peer-run, non-coercive alternatives to traditional mental health systems, and to end rights violations and discrimination against people with psychiatric disabilities. She founded a number of early consumer-run organizations and had a profound impact on furthering the recovery and wellness of people facing psychiatric challenges around the world. In 1992, Chamberlin received the Distinguished Service Award of the President of the United States. She authored the seminal National Council on Disability report “From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves” (2000). She chronicled the last months of her life in a blog, “Life as a Hospice Patient” http://judi-lifeasahospicepatient.blogspot.com.
In the wake of Chamberlin’s death, many spoke of her legacy.
Said former first lady Rosalynn Carter, “I was deeply saddened to hear about the passing of Judi Chamberlin. Since 1978 I have admired her groundbreaking legal and human rights advocacy work and the key role she played on the Carter Commission on Mental Health. She worked fearlessly to ensure that the voice of consumers was heard from the clinical level to the public policy arena. Both as a leading advocate and an inspiring individual, she will be sorely missed."
“Judi was the wind beneath the wings of our movement here and around the world,” said Daniel Fisher, M.D., Ph.D., a founder of the NCMHR. “Her dream and courage will live on in our hearts.”
“In the nearly 30 years I have known Judi, I have been deeply inspired by her passionate efforts on behalf of individuals with psychiatric histories,” said Joseph Rogers, executive director of the federally funded National Mental Health Consumers’ Self-Help Clearinghouse, which serves the consumer movement.
“Judi Chamberlin's life and work gave people in the mental health field an example of how people [with psychiatric disabilities] can have full and rich lives in their communities,” said Richard Frank, Ph.D., deputy assistant secretary, Office of Disability, Aging, and Long-Term Care Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.
The National Coalition for Mental Health Recovery (www.ncmhr.org) works to 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.
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]
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
You can view this article and provide comments at the Justice For All blog.
National Coalition of People with Psychiatric Histories Mourns the Death of Senator Edward M. Kennedy
WASHINGTON (8/26/09) – The National Coalition of Mental Health Consumer/Survivor Organizations (NCMHR) 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, people in pain, people struggling for a better life – in the American community,” said Lauren Spiro, director of the Coalition. “Sen. Kennedy and his staff have worked diligently with the Coalition to further our mission and strengthen our voice. We echo the words of President Obama, who said, ‘Our country has lost a great leader, who picked up the torch of his fallen brothers and became the greatest United States senator of our time.’
Senator Kennedy devoted his career to expanding health coverage to as many Americans as possible. A fitting memorial to the Senator would be the passage of comprehensive health care reform as soon as possible,” Spiro said.
“The National Coalition for Mental Health Recovery offers our deepest sympathy to Senator Kennedy’s family at this sad time.”
The National Coalition for Mental Health Recovery works to ensure that people who have experienced severe emotional distress have a major voice in the development and implementation of health care, mental health, and social policies at the state and national levels. The Coalition advocates for mental health policies that promote full participation and integration in the community and end discrimination.
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 (www.whitehouse.gov/ope) which conducted the event:
I want to congratulate the White House on its terrific celebration of the signing of the UN Convention on the Rights of persons with disabilities. I was excited to see the Obama administration fulfill its campaign promise to catch up with the world in this important area. President Obama's words regarding President Roosevelt were insightful. He first said that FDR had done so much despite his disability and then reflected and said perhaps he was able to do so much because of his disability. As a person who has recovered from schizophrenia, become a psychiatrist, and been a member of the New Freedom Commission on Mental Health I feel, in a similar manner, that my disability has challenged me and many of my peers to find a deeper purpose in life. As a member of the steering com. of the National Coalition of Mental Health Consumer/Survivor Organizations, representing the millions of persons with mental health issues I feel my greater purpose is to articulate their needs and goals on a national level. I and my constituents look forward to being able to view the photos that were taken, because we feel very privileged to have had an opportunity to be represented at this ceremony.
I extend a special note of gratitude to Celia Brown and Tine Minkowitz who tirelessly worked to create the UN CRPD — Dan Fisher.
By Andrew Imparato, AAPD President and CEO
Please note: The Justice for All Action Network is now the National Disability Leadership Alliance (www.disabilityleadership.org)
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 Kelly Buckland, the new Executive Director and former Board President of the National Council on Independent Living; Bruce Darling, a national organizer with ADAPT and Executive Director of the Center for Disability Rights in Rochester NY; Chester Finn, President of Self Advocates Becoming Empowered (accompanied by Karen Topper of SABE); Nancy Bloch, Executive Director of the National Association of the Deaf; Brenda Battat, Executive Director of the Hearing Loss Association of America; Ron Brown, Second Vice President of the National Federation of the Blind and President of NFB of Indiana; Eric Bridges, Director of Advocacy and Governmental Affairs for the American Council of the Blind; Gary Arnold, Vice President for Public Relations for Little People of America; Ari Ne'eman, Founder and President of the Autistic Self Advocacy Network; Dan Fisher, steering committee member of the National Coalition of Mental Health Consumer Survivor Organizations; and Andy Imparato, President and CEO of the American Association of People with Disabilities.
Imparato kicked off the meeting by describing how JFAAN came into being, and Fisher and Finn talked about the importance of working with disability-led organizations for the White House. Ne'eman and Bridges touched on some of the disability community's priorities for health care reform, and Darling pressed on the need to end the institutional bias as part of health care reform and some of our coalition's priorities for housing policy. Rob Sweezy, an attendee invited by Dale to represent an Amerigroup-funded National Advisory Board, chimed in on the importance of home and community-based long term services and supports. Ne'eman, Bloch and Sweezy then touched on some of our education policy priorities, including ideas for addressing the problems identified in the recent GAO report documenting widespread school abuse of children through aversives, restraint and seclusion; followed by Battat and Brown talking about our technology and transportation policy priorities. Imparato quickly referenced a draft JFAAN employment policy paper, which Dale expressed an interest in reviewing. The group thanked Dale and Crowley for their time and expressed an interest in quarterly meetings, something that Dale and Crowley were not willing to commit to at this time. The JFAAN attendees felt that this was an historic meeting and look forward to engaging with other leaders in the Administration and in Congress moving forward.
The Justice for All Action Network has weekly one-hour calls and is in the process of organizing working groups on different coalition priority areas. There are currently working groups on employment policy, health care reform, and grassroots organizing. We will send out regular updates on the network's activities on the Justice for All listserv. Anyone interested in participating on the weekly calls or one of the working groups, please contact Sarah Peterson, Grassroots Organizer and JFA Moderator, at AAPD at email@example.com.
Join JFA Today! Moderated by the American Association of People with Disabilities, Justice For All (JFA) is a cross-disability network of people interested in disability issues. A FREE membership gives you access to a semi-weekly newsletter with breaking news, action items, and community commentary. Members are encouraged to contribute to the dialog with comments and questions on the JFActivist Blog.
President-elect Barack Obama's transition team invited representatives from NCMHR 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.
NCMHR was represented at this meeting by Daniel Fisher, MD, and Effie Smith of the Steering Committee and Ken Wireman of a member organization, On Our Own of MD. In addition, the Depression Bipolar Support Alliance (DBSA) was represented by their vice president of peer support, Jim McNulty, and vice president of scientific affairs, Dr. Allen Daniels. Self Advocates Becoming Empowered (SABE) were represented by their President, Chester Finn. The meeting was an opportunity to present 7 important policies for forwarding the interests of our constituents in the broader disability areas. The policies presented are as follows:
Mental Health Policy Proposals to the Obama Administration
The National Coalition of Mental Health Consumer/Survivor Organizations, DBSA, and On Our Own of MD., propose to the incoming Obama Administration, a new mental health initiative, "Recovery and Empowerment based Mental Health " based on the principles of the mental health recovery movement: self-determination, empowerment, low cost, and whole health: These policies would facilitate recovery and community inclusion, while reducing costs. They help mental health consumers take an active role in making the transition from tax spenders to tax payers at a time when our economy is in trouble. Recovery, peer support, and self-help decrease mental health costs and social security payments, and improve the overall health of our communities. Many of these new policies center on the employment of mental health peers. A mental health peer is a person who has experienced their own recovery from mental illness and has learned to use what they have learned to facilitate recovery by other mental health consumers. Our Our groups are working closely with the larger cross disability community to make proposals from that point of view. Our policy proposals are:
Tragedies In Psychiatric Hospitals Prompt Call For Peer Recovery, Wellness Centers
Mental Health Weekly, Vol. 18, No. 46 December 8, 2008
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.
A psychiatric hospital emergency room death earlier this year sparked outrage among the mental health community. In Brooklyn, a patient, Esmin Elizabeth Green, had been waiting for treatment in psychiatric hospital emergency room for nearly 24 hours when she collapsed onto a waiting room floor, where she lay, ignored before dying (see MHW, July 14).
In yet another incident earlier this year, a 50-year-old patient diagnosed with bipolar disorder died in a North Carolina psychiatric institution after he had choked on medication, while hospital employees who were nearby, ignored his plight and played cards and watched television, according to news reports.
The tragic incidents have prompted advocacy and disability groups around the country to call for reform on improving conditions in psychiatric emergency rooms, and for the creation of more community based alternatives. Advocates express the need to work to build a system so that multiple alternatives are available so that people don't end up in a psychiatric crisis in an emergency room.
Community-based services should be available to keep people out of crisis, jails and other inappropriate settings, said Daniel B. Fisher, M.D., Ph.D., executive director of the National Empowerment Center, and a member of the National Coalition for Mental Health Recovery (NCMHR). 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 consumer-run national technical assistance centers.
Alternatives To ER
"One of the major difficulties is that many people who work in emergency rooms do not understand how to relate to somebody in an emotional crisis," Fisher told MHW. "Many times staff is under the impression that a person distressed can't be communicated with and that's not true," he said. A high priority for the coalition is to propose alternatives to the psychiatric hospital, said Fisher.
"The hospital setting is such a disruption," said Fisher, who noted his own struggles. "I went through that several times before I became a psychiatrist. You're separated from everyone that you know. The two biggest factors of trauma is isolation and loss of control."
The coalition is advocating for a number of changes, including the implementation of 'warm lines' — telephone services staffed by people with psychiatric disabilities who offer phone support to their peers. These lines are not crisis lines, but can help people before their situation becomes a crisis, he said. Other recommendations include training police to approach persons in emotional stress in a more humane manner and hiring peer advocates to be part of an emergency room crisis team to ensure that consumers are protected at all times.
Fisher said he is on a disability committee currently in discussion with Obama's transition team. They are working on a letter proposing their ideas and recommendations to the team, he said. The coalition also plans to host a Disability Ball during Obama's inauguration next month. "It will provide us an opportunity for networking with the people on Obama's transition team," he said.
The New York Association for Psychiatric Rehabilitation Services (NYAPRS), a new member of NCMHR, recently convened a series of regional psychiatric emergency care forums across the state, which brought together local hospitals, local and state mental health officials, peers, service providers and family members.
"We know so much more about what works and so little of it is implemented," Harvey Rosenthal, executive director of NYAPRS, told MHW. Rosenthal said advocacy groups were pleased that Kings County Hospital, the site of Esmin Green's death in June, now involves peer workers assigned to work with consumers with psychiatric disabilities.
Rosenthal also noted that state officials in Pennsylvania and California are currently in negotiations to implement a program similar to the Living Room program in Arizona, a peer-operated crisis alternative initiative, which offers consumers in need of assistance with life crises, a comfortable, homelike setting.
In Massachusetts, advocates are also working to improve conditions in psychiatric emergency rooms, said Cathy A. Levin, chairwoman of the Emergency Room Rights Campaign at the Massachusetts People/Patients Organizing for Wellness, Empowerment and Rights (M-Power).
Levin cited legislation introduced by Rep. Ruth Balser (DMass.) to protect people with mental illness in emergency rooms. The bill requires the state department of Public Health and the Department of Mental Health to write new regulations concerning psychiatric and behavioral health patients in emergency rooms. The legislation also provides mental health advocates, such as M-POWER and NAMI-Mass. with an opportunity to sit at the table in policy discussions.
Levin noted that one of the reforms in the legislation calls for an end to requiring patients to strip their clothing in emergency rooms. "In Massachusetts, we ended that practice through [the efforts] of our stakeholder group," Levin, told MHW. Psychiatric patients do not have to strip their clothes unless the person is in imminent danger, she said.
"We complained about overuse of being stripped for "security reasons," said Levin. "We're concerned about overuse of restraints, injections without informed consent, intimidation by armed, uniformed security guards and inferior medical treatment due to discrimination and stereotype."
The legislation is also working on better education standards for emergency room staff, said Levin. "We want to take care of the problems and discrimination in emergency rooms that leads to inferior medical care," she said.
Additionally, community mental health services are chronically underfunded, especially due to budget cuts across the state, said Levin. More people are going to emergency rooms, and as a result, emergency room staff is overwhelmed. Levin noted that consumers have also complained about getting stuck for 12 hours, 24 hours, 36 hours, even two days or more, before receiving appropriate care.
"Psychiatric patients can get stuck if they have additional complicating factors, such as developmental delays, severe psychosis, history of being in restraints, and co-occurring physical conditions like cardiac problems or epilepsy," she said.
Levin added, "However, it is common to hear my peers without any of these problems tell stories about excruciatingly long ER stays." M-Power is also working on alternatives for consumers who end up seeking care in emergency rooms, she said.
"We are looking for alternative places to send people," she said. The organization intends to propose work on legislation that would get peers involved in emergency room staff training in 2009, Levin noted.
National Coalition Recommendations For Reform Of Public Mental Health System
The National Coalition for Mental Health Recovery' (NCMHR') main recommendations for reform of the country's public mental health system include:
By Rachel Freund
"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:
1. Use the National Voter Registration Act
The National Voter Registration Act, (NVRA – also known as the Motor Voter
Law) requires all state-funded organizations that provide services to people
with disabilities, including mental health services, like out-patient,
residential, psychiatric rehabilitation, case management and drop-in centers, to
assist those they serve with voter registration and to report their registration
data every month to their state.
2. Activate the grassroots to register, educate and energize our peers.
NVRA is your ticket into agencies. Staff are often weary and overworked and have little time to make sure that they are offering everyone they serve an opportunity to register to vote. They'll be happy to have your help.
You can train volunteers to register and educate their peers. At Pennsylvania Mental Health Consumers' Association (PMHCA), we've trained dozens of voter educators who are helping to build a consumer power base. Those who get involved become active voters who continue to be civically engaged by advocating for themselves and other people with disabilities.
People are far more likely to be drawn in if their peers encourage them to get engaged. We set up tables in out- patient clinics, visited personal care homes and other residential facilities and show up at food pantries and at special events with clipboards and voter forms in hand.
This work changes the people who are involved. One volunteer, Ralph, reported that after working hard on our voter outreach project, "I felt a sense of belonging. I feel that I'm here representing a lot of people. I can go back home and share the information with others who aren't as involved as I am. Being involved in this group, being respected by others, has helped me to have respect for myself. If you have a sense of self-respect, you can go anywhere with it."
Get organized! You can find wonderful resources on voter engagement here:
Where will you find volunteers to make your project a success? I like to follow the advice of Michael Gecan, author of 'Going Public; an Organizer's Guide to Citizen Action':
3. Make sure your registration work gets counted
Unless policy makers have data to show how many voter registrations we produce, we will not be recognized as a political force. We can use the framework of the NVRA to assure our numbers are documented.
You may have to play detective (I like to see myself as a cross between Erin Brockovich and Velma from Scooby Doo…). First, find out how your community is doing! You can see the grim statistics for your state by checking this report to Congress and looking at page 34 - www.eac.gov/clearinghouse/docs/the-impact-of-the-national-voter-registration-act-on-federal-elections-2005-2006/attachment_download/file (1.85MB, 122 pages).
Find out how the data gets collected in your community. Who reports on how many registrations come from Disability Service Organizations? Start with your Department of Human Services. Ask questions! Your Department of State should be able to explain to you how they collect data from various voter registration sources and how you can be sure your numbers are showing up.
We were displeased to find that the system in our state, Pennsylvania, has broken down over the years since NVRA passed and that most counties in our state reported ZERO registrations from disability service organizations, in spite of our hard work. We are now working closely with the Department of State to correct the problems in record-keeping.
As you work to implement these three steps, you'll be enriched with marvelous partnerships – there are strong voters' rights advocates everywhere who will be happy to work with you, from the League of Women Voters to People for the American Way and the League of Young Voters. All of work becomes more robust as we knit it together. Share your triumphs and challenges with your peers; we'd love to hear about what's happening in your community!Civil rights activist Bayard Rustin offers advice that still rings true at this moment in history, "More than voter registration is involved here. A conscious bid for political power is being made, and in the course of that effort a tactical shift is being affected… calling for the building of community institutions or power bases."
A federal judge in Jefferson City has ordered a Missouri social service agency to meet its voter registration responsibilities for low-income clients.
The Association of Community Organizations for Reform Now, also known as ACORN, sued the Missouri Department of Social Services in April, alleging that it had failed to help low-income and disabled clients register to vote, as required by federal law.
The national "motor-voter" law requires such agencies to provide clients with voter registration assistance.
In her preliminary injunction issued Wednesday, U.S. District Judge Nanette Laughrey ordered the department to begin offering voter registration assistance as required by law. Laughrey also dismissed state claims that offering such help would detract from meeting other client needs.
"(The department's) unsubstantiated claims as to resource scarcity do not outweigh the explicit Congressional purpose of removing barriers to voting," Laughrey wrote.
Laughrey also ordered the department to notify its employees of its voter registration responsibilities within five days and devise a monitoring system to count client visits and offers of voter registration.
WASHINGTON, DC – March 13, 2008 (Source - USPRA)
Marcie Granahan, CEO of US Psychiatric Rehabilitation Association, Elected Board Member Peter Ashenden and Research Committee Chair Dr. Sandra Resnick testified before the US House of Representatives' Military Construction, Veterans Administration, and Related Agencies (MILCON) and Labor, Health and Human Services, Education, and Related Agencies (LHHS) Sub- committees. Peter Ashenden is Executive Vice President of the Depression Bipolar Support Alliance.
In front of the MILCON Sub-committee, Granahan addressed the lack of funding to provide evidence-based rehabilitative programs to returning veterans, specifically supported employment, and asked that funding be increased for these services through the Department of Veterans Affairs. During the hearing Representative Zach Wamp (R-TN) referred to psychosocial rehabilitation as the "missing link" in veteran's mental health services.
Later that day, Granahan, along with Ashenden, spoke before the Labor HHS sub-committee. Addressing the President's 2009 proposed funding cuts to SAMHSA, particularly to the Programs of Regional and National Significance, both sited examples of the value that the Rehabilitation Research and Training Centers and the Consumer Technical Assistance Centers provide—in addition to the importance of statewide networking grants and state transformation grants—in advancing the recommendations of President Bush's New Freedom Commission on Mental Health and the Institute Of Medicine for self-directed care, recovery, and consumer-centered services.
In an unusual move, Chairman David Obey (D-WI) retreated from the standard passive involvement in hearing testimony and engaged both Ashenden and Granahan with questions and comments. The Chairman went out of his way to remind the committee that last year President Bush's Budget request was $42 million less than the prior year, and the LHHS sub-committee had increased funding to $911 million.
Presented at the Substance Abuse Mental Health Services Administration/Center for Mental Health Services
National Wellness Summit to Reduce Co-morbidity and Early Mortality of People with Mental Illness
Rockville, Maryland, September 17-18, 2007
Lauren Spiro, Director of Public Policy, National Coalition for Mental Health Recovery, www.ncmhr.org
Good morning. I want to thank Paolo del Vecchio and the Center for Mental Health Services for inviting me to speak about promoting wellness on the individual level. My name is Lauren Spiro and I am the Director of Public Policy for the National Coalition for Mental Health Recovery. Our coalition was formed last year. Currently our members include 27 statewide consumer-run organizations and the three national consumer-run technical assistance centers.
I grew up about 20 minutes from here in a middle-class neighborhood. I didn’t have to worry about my next meal or a safe, decent place to live; I took those resources for granted. I don’t take them for granted today; many people who need mental health services and supports don’t have these basic resources.
Like so many of our stories, my story includes abuse, neglect and trauma. By the age of 16, I was in a mental institution. What I most needed was someone to talk with me, to listen to me, love me, respect me, and provide support so I could figure out who I was and find a meaningful place in the community. Instead, the services I received taught me about coercion, force, and control by others, which added layers of trauma and humiliation.
I was diagnosed with chronic schizophrenia. My family was told that I would neither recover nor have a meaningful life in the community; I would spend the rest of my life in mental institutions and I would always need psychiatric drugs.
Fortunately, the experts were wrong. I am the evidence that recovery happens. I have worked very hard to find wellness, and building a strong support network was key. I have had resources, supports, and people who loved me and believed in my ability to heal. I have come a long way from the time I was locked in a seclusion room at the age of 16.
I am not surprised that data show the significant impact trauma plays in the development of mental health problems. I used to blame myself for things that happened to me. I no longer do that. Learning to liberate myself from the damage that was done to me has been the greatest challenge of my life. This process of liberation – learning to be whole and healthy – has given me the greatest rewards I have ever known: love; a sense of meaning, purpose and belonging; and a lot more.
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.
To promote my wellness, broad-based systems changes are needed. I need to be a full member of the community and given complete respect for my rights
I need to be in the center of decisions that affect my life. I need people who care for me, respect and believe in me. I need hope, a job, a home and an education. I need to be in charge of my life. I need the same opportunities for life, liberty and the pursuit of happiness that every individual should have. I need an enlightened society that understands that people recover and that every person who comes in contact with a person on their recovery journey can assist in that journey by being hopeful.
In order for my basic needs to be met, the definition of disability needs to focus not on fixing me or adjusting to my deficits but rather on providing services, supports, and treatment designed to assist me to attain or maintain independence and to promote wellness and community integration.
I need health insurance that is independent of my disability status and my employment status.
I need a transformed mental health system that is consumer-driven.
I need consumer/survivors to be proactively engaged in the following five areas: healthcare and mental health planning, policy formulation, training, service delivery, and evaluation.
I need control of my healthcare dollars through self-directed care, which allows public funding to follow the person rather than the provider. This way I can design a personal road to recovery by making decisions to the greatest extent possible with respect to service provision and spending my allotted dollars (e.g., www.flsdc.org, Florida Self-Directed Care). I need personal care assistants, which are also covered under a Medicaid waiver, to help with my basic needs such as getting groceries and living on a budget.
I need changes within the mental health system such as alternatives to hospitalization, peer-run crisis respite (e.g., www.charityadvantage.com/people/RoseHouse.asp), and wraparound community-based services that maintain a client-directed approach.
I need accessible, culturally appropriate, flexible and affordable services that treat me with dignity, respect my rights, and support my self-defined needs. This range of services must include consumer-run and -operated programs, such as peer support, advocacy, self-help, and recovery education services (including Wellness Recovery Action Planning and crisis planning), along with consumer-driven, recovery-oriented professional services. These services and supports help me build internal and external resources and link me to a recovery community. These services need to be available in school mental health programs, programs for older adults with mental health problems, and institutions (such as correctional facilities, nursing homes, and psychiatric hospitals).
I need a safe, affordable, accessible place to live. I need to not be warehoused in institutions, including jails and nursing homes.
I need for everyone involved in my treatment and support to maintain a philosophy of hope that we can heal mind, body and spirit. I need you to believe that I am capable of living the life of my dreams.
I need service providers to understand my experience, including the complex effects of trauma and oppression, before settling too quickly on a diagnosis. A mutual understanding of these dynamics, and the impact they have had on my sense of self, will strengthen our healing relationship.
I need service providers to understand the difference between coercion and alliance and how to share power. Coercion destroys my sense of personhood and identity. Building a collaborative alliance is empowering.
I need education and access to self-initiated, non-pharmaceutical strategies to improve my physical, emotional, and spiritual wellness. These alternative approaches enhance my self-esteem and my sense of meaning, purpose and accomplishment. These approaches (such as yoga, homeopathic medication, vitamins, massage, acupuncture, etc.) need to be affordable.
I need to be in the center of medical decisions that directly impact my life. That means that I respect you, my psychiatrist, as an expert by training: you have knowledge of the scientific literature and clinical experience. And I expect you to respect me as an expert by experience. I know how my body and my mind react in situations or with particular psychiatric medications. I need a relationship built on alliance, not on compliance. I need a collaborative relationship in which we share information and forge a partnership of equals, where we establish consensus on the problem, the goals, and the criteria for success. If I decide that the treatment is worse than the side effects, I need you to work with me to find medications and alternative healing methods that support my unique needs on my journey to wellness.
I need more opportunities for people who have been through the mental health system to train healthcare providers.
I need suicide prevention services, such as consumer-run warm-lines, to enhance peer support, build social networks and reduce crisis center use and hospitalization.
I need to contribute significantly to the community. To reclaim a valued social role, I need meaningful choices that give me the freedom to be in charge of my life.
I need a seat at the table where decisions are made about my life and the lives of my peers. When I speak, I need my voice not only to be heard but to be understood.
I need full disclosure so that I can make informed decisions based on complete and accurate information, so that I understand the consequences of my choices.
I need for my psychiatric advance directive to be honored and respected so that I may determine my treatment based on my values and preferences.
I need integrated, flexible care that is coordinated between mental health and primary healthcare providers, and to have everyone involved, including hospital emergency room staff, adopt a values-based, recovery-oriented approach.
I need diversion programs and prevention programs so that my mental health problems do not become criminal justice problems. When law enforcement does get involved, I need procedures that reduce and/or eliminate re-traumatization (for example, alternative transportation methods, minimizing use of handcuffs and shackles, etc.).
I need school-based, preventive services and supports that focus on building resiliency and wellness before I develop mental health problems.
Someone said that a journey of a thousand miles begins with a single step. Forming the coalition was one step. We need more coalitions at the state and national levels.
Consumer/survivors need to be central in transforming the system. Our voice must be heard. We are the ones dying. We are the ones that have the most at stake in fixing the system.
Lastly, I think the goal of this summit should not be to reduce co-morbidity and early mortality. The goal should be to eliminate it.
Thank you for listening.
Deegan, P.E., Drake, R.E., (2006). Shared Decision-Making and Medication Management in the Recovery Process, Psychiatric Services, 57(11), 1636-1639.
Schauer, C., Everett, A., and del Vecchio, P. (2007). Promoting the Values and Practice of Shared Decision-Making in Mental Health Care, Psychiatric Rehabilitation Journal, 31(1), 54-61.
Mental Health Consumer/Survivor Operated Resources
Crisis Respite Programs:
Our Place, 1663 East Main Street, Lancaster, OH 43130, Phone 740-654-0477, email Executive Director: Patricia Waits firstname.lastname@example.org
Rose House, Orange and Ulster Counties, NY, Phone 845-795-2346, Address 1612 Route 9W, Hilton, NY 12547; Mailing address PO Box 525, Marlboro, NY 12542, http://www.charityadvantage.com/people/RoseHouse.asp
Sweetser Learning & Recovery Center, 174 Mere Point Road, Brunswick, Maine 04011; (207)373-4273; Web site: www.sweetser.worldpath.net//peers.aspx
Icarus Project, www.theicarusproject.net
Youth MOVE National, www.tapartnership.org/youth/YouthMOVE.asp
Contac - www.contac.org
Sherry Mead Consulting - www.mentalhealthpeers.com
Mary Ellen Copeland, Mental Health Recovery & WRAP - www.mentalhealthrecovery.com
National Mental Health Consumers' Self-Help Clearinghouse - www.mhselfhelp.org – go to Consumer Directed Services Directory (CDS Directory)
Pat Deegan - www.patdeegan.com
National Empowerment Center - www.power2u.org
News Release - May 3, 2007
Countering Discrimination and Stigma by Promoting Mental Health Recovery and Resiliency
The National Coalition for Mental Health Recovery is a coalition of people with psychiatric diagnoses1 who counter stigma and discrimination through the evidence of their recovery2.
RECOVERY AND TRAUMA
MEDIA AND STIGMA/DISCRIMINATION
INVOLUNTARY TREATMENT VERSUS VOLUNTARY, PEER-DRIVEN SERVICES
RECOMMENDATIONS ADDRESSED TO YOUNG ADULTS, THE MEDIA AND THE ACADEMIC COMMUNITY
1 People with psychiatric histories are also known as consumers and/or survivors.
2 The federal Substance Abuse and Mental Health Services Administration (SAMHSA) has defined mental health recovery as 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.
Press Release - April 20, 2007
WASHINGTON (4/20/07) – The National Coalition for Mental Health Recovery (www.ncmhr.org ), 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.”
“Let’s turn this crisis into an opportunity to understand more about mental health and create a more healthy and peaceful community,” said Coalition member Can Truong. The Coalition endorses this approach and the importance of supporting one another, and promotes peer-run mental health education, awareness and advocacy organizations such as Active Minds on Campus (www.activemindsoncampus.org).
The Coalition also applauds Mental Health America for urging the public to avoid diagnosing others or engaging in “profiling” of groups such as those who appear to be foreign-born or people with psychiatric diagnoses.
“Reacting with judgment and labeling, fueled by the media, perpetuates misinformation and is a disservice to us all,” said Spiro. According to a study published in the American Journal of Public Health in September 2002, “Violent crimes committed by psychiatric patients become big headlines and reinforce the social stigma and rejection felt by many individuals who suffer from mental illness. But our findings suggest that serious violence is the rare exception among all people with psychiatric disorders. The public perception that people who are mentally ill are typically violent is unfounded.” In fact, research shows that people with psychiatric disabilities are far more likely to be victims than perpetrators of violent crime.
Given what has been reported about Cho’s abuse by bullies, the role of trauma in the tragedy should be understood. “Ninety percent of persons receiving services in public mental health systems have been exposed to trauma,” said Coalition member Mary Blake, a trauma survivor and a consultant to the National Center for Trauma-Informed Care. “Services must be sensitive to the fact of trauma in people’s lives.”
The National Coalition for Mental Health Recovery works to ensure that people who have experienced severe emotional distress have a major voice in the development and implementation of health care, mental health, and social policies at the state and national levels. The Coalition advocates for mental health policies that promote full participation and integration in the community and end discrimination.
“This tragedy is a reminder of the fragility of our humanity and the importance of reaching out with compassion to each other, especially those in distress,” said Spiro.
Contact: Lauren Spiro, NCMHR director of public policy, 703-862-6512
Contemporary American psychiatry has been dealt a shattering blow by no other than one of the most influential psychiatrists in academia.
Vera Hassner Sharav - Alliance for Human Research Protection (AHRP)
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, including the influential book, "The Broken Brain" (1984, recently released) in which she 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 in need of "a reverse Marshall plan so that the Europeans can save American science by helping us figure out who really has schizophrenia or what schizophrenia really is..."
Dr. Andreasen points an accusing finger at psychiatry's reliance on an invalidated diagnostic guideline:
"The DSM has had a dehumanizing impact on the practice of psychiatry. History taking —the central evaluation tool in psychiatry —has frequently been reduced to the use of DSM checklists. DSM discourages clinicians from getting to know the patient as an individual person because of its dryly empirical approach. Third, validity has been sacrificed to achieve reliability. DSM diagnoses have given researchers a common nomenclature —but probably the wrong one. Although creating standardized diagnoses that would facilitate research was a major goal, DSM diagnoses are not useful for research because of their lack of validity."
Yet, she notes, the DSM-III and its successors, DSM III-R and DSM-IV were universally and uncritically accepted as if they were the ultimate authority on psychopathology and diagnosis. DSM forms the basis for psychiatric teaching to both residents and undergraduates throughout most of the United States.
Equally astounding--especially to those who didn't pay heed to critics who pointed out 20th century psychiatry's failings and decades of abusive "treatments"--is that Dr. Andreasen has to go back to the 19th century to find a period during which psychiatry resembled something close to a healing profession:
"the early psychiatrists attempted to develop therapies that might help to relieve mental pain in as humane and effective a manner as possible.
The picture of Pinel freeing the mentally ill from their chains is perhaps the most famous icon of their therapeutic approach. ''Moral therapy'' was developed in many countries in Europe, in Britain, and in the United States. In an era when no pharmacological treatments were available, it emphasized a variety of psychotherapeutic techniques that included personalizing the care to the individual's needs, using non-intrusive and compassionate approaches, appealing to reason when possible, and giving the patient some responsibility for improving symptoms and behavior."
This firm conceptual and moral grounding, she acknowledges, is what psychiatry should strive to maintain--not the invalid, dehumanizing current practices.
She also acknowledges that the evidence has shown since the 1970s that "American psychiatrists were over diagnosing mental illnesses in comparison with the rest of the world and not doing systematic clinical assessments and that their diagnoses and clinical assessments were not reliable."
"Someday, in the 21st century, after the human genome and the human brain have been mapped, someone may need to organize a reverse Marshall plan so that the Europeans can save American science by helping us figure out who really has schizophrenia or what schizophrenia really is..."
In the meantime, psychiatry continues to expand its domain, devaluing those it labels as mental patients, subjecting them to harmful chemical interventions that undermine both their mental and physical health.
Dr. Andreasen is strangely silent about the all-pervasive influence the pharmaceutical industry has wielded on psychiatry during the second half of the 20th century. Conflicts of interest have been a dominant factor in the task force responsible for the formulation of DSM-III R and DSM-IV. Those conflicts of interest have been documented by Dr. Lisa Cosgrove and Dr. Sheldon Krimsky. www.tufts.edu/~skrimsky/PDF/DSM%20COI.PDF and www.ahrp.org/cms/content/view/144/27/
ALLIANCE FOR HUMAN RESEARCH PROTECTION (AHRP)
Contact: Vera Hassner Sharav
(Washington, DC) Lauren Spiro, NCMHR Director of Public Policy, and Leah Harris, member of the NCMHR's DC Advisory Group, attended the Bazelon Center's "Working Breakfast" on March 8, 2007 which featured Congressman Patrick Kennedy and a distinguished panel of key experts on mental health policy initiatives on the Hill. For a detailed summary of the meeting, please visit: http://www.bazelon.org/newsroom/2007/BREAKFAST030807.html.
Spiro and Harris both submitted questions relating to the importance of promoting the consumer/survivor voice in policymaking as well as preserving funding for consumer/survivor and recovery-oriented programs. Panelist Martin Tolchin, Senior Editor and Publisher of The Politico, encouraged consumers/survivors to work together with policymakers to influence the media. He suggested that we need to put pressure on the media to avoid sensationalism and celebrity stories and to put the focus back on real people and real issues. He encouraged us to tell our stories to our policymakers, who can in turn share these stories with their media contacts. We should be reaching out not just to our congresspeople but to their staff as well.
Panelist Connie Garner, Policy Director for Disability and Special Populations for Senator Edward M. Kennedy on the Senate Committee on Health, Education, Labor and Pensions, informed us that "this is the year for mental health issues." She agreed that families and consumers are often on the low end of the totem pole and are not validated by the system. She acknowledged that consumer involvement was essential in the policymaking process. "We need to give people tools to show them that they are part of what's happening," she said. She supported the creation of ombudsman programs with agencies like the Department of Labor and Health and Human Services so that the consumer voice could be more systematically incorporated into policy. She noted that consumers and stakeholders also need to have more active roles in the evaluation of SAMSHA state performance plans.
Large Bipartisan Majority Support
March 7, 2007
Contacts: Robin Costello 401-729-5600 (Kennedy)
WASHINGTON DC - Congressmen Patrick J. Kennedy (D-RI) and Jim Ramstad (R-MN) today introduced "The Paul Wellstone Mental Health and Addiction Equity Act "( H.R. 1367), to improve the overall health of all Americans by granting greater access to mental health and addiction treatment and prohibiting health insurers from placing discriminatory restrictions on treatment.
Since February, the Congressmen have been crisscrossing the country touting the merits of the legislation with their "Campaign to Insure Mental Health and Addiction Equity". The response has been overwhelming with support surfacing from every corner of society. The legislation is cosponsored by an historic bipartisan majority of 256 Members of Congress, including House Leaders.
"This bill is really very simple," said Congressman Kennedy. "Millions of Americans pay their premiums every month, but when they or their children or family members get sick, their insurance isn't there for them. That's not fair and it's not smart. This is a public health crisis that in some way touches every family in America. It's time to break down the barriers to good mental health and addiction treatment."
"It's time to finish what we started in 1994 with our friend and colleague, the late Senator Paul Wellstone, and end the discrimination against people with addiction," said Congressman Ramstad "This is not just another public policy issue. This is a life-or-death issue for millions of Americans."
The bill expands the Mental Health Parity Act of 1996 by requiring group health plans that offer benefits for mental health and addiction to do so on the same terms as care for other diseases. The legislation closes the loopholes that allow plans to charge higher co-payments, coinsurance, deductibles, and maximum out-of-pocket limits and impose lower day and visit limits on mental health and addiction care.
According to the Government Accountability Office, nearly 90 percent of plans impose such financial limitations and treatment restrictions on mental health and addiction care despite voluminous scientific research documenting the biological, genetic, and chemical nature of these diseases, and the effectiveness of treatment. Both the House and Senate version of the bill applies to group health plans of 50 or more people.
Last month, The Senate Health, Education, Labor and Pensions Committee approved similar legislation, The Mental Health Parity Act of 2007, sponsored by Senators Kennedy (D-MA), Domenici (R-NM), and Enzi (R-WY). Among the differences is that the House bill, informed by the sponsors' forums across the country, requires health plans offering mental health benefits to cover the same mental health and addiction disorders that are included in the health plans Members of Congress use. The Senate bill has no such provision. The bills also differ in how they impact related state laws.
The Kennedy-Ramstad legislation is modeled after the Federal Employees Health Benefit Program, which covers Members of Congress and other federal workers and dependents and which implemented equality in mental health and addiction coverage in 2001. According to an exhaustive study published earlier this year by the Department of Health and Human Services, the federal employees' parity policy was implemented with "little or no increase in total MH/SA [mental health/substance abuse] spending".
A majority of respondents to a National Mental Health Association survey indicated that they would support parity legislation even if it meant a $1 per month increase to their premiums. The Congressional Budget Office has estimated that such legislation will increase health care costs less than that amount.
On November 28, 2006, the collective voice of the mental health consumer/survivor movement was heard on Capitol Hill for the first time. On that day, two representatives of the National Coalition for Mental Health Recovery had hour-long meetings with aides to Senator Edward Kennedy (Health and Human Services Authorization), Senator Tom Harkin (chair of the subcommittee on Labor, Health and Human Services, Appropriations) and Congressman Patrick Kennedy (House lead on mental health).
“November 28 was a historic day for our movement,” said Coalition director of public policy Lauren Spiro, who, with Steering Committee member Dan Fisher, met with the Senate and Congressional aides. “In the past, it has been difficult to get 10 minutes of one aide’s time on Capitol Hill. But now there is a new era of political power for mental health consumer/survivors. On November 28, our collective voice was heard on Capitol Hill as never before – although I do not want to detract from the efforts of individual consumer/survivor leaders who have had an impact on the Hill.”
One such leader applauded the new initiative. “As an individual who has been trying to hold down the fort,” said Steering Committee member Joseph Rogers, “I really welcome the new, more collective organizing effort that the Coalition represents. While we have been able to have an impact on legislation, it has been piecemeal. My hope is that, with the Coalition, we can have a more consistent presence in Washington, resulting in our collective voice truly being heard.”
Senator Kennedy’s aide told Spiro and Fisher that she found the Coalition’s values statement a good starting point, and invited Spiro to participate in a Substance Abuse and Mental Health Services Administration re-authorization group she is putting together to develop principles, policies and proposed legislation. Senator Harkin’s aide requested a follow-up meeting with the Coalition, tentatively scheduled for January 11, 2007. “Harkin’s aide said she would involve more staff interested in mental health,” Spiro said. Congressman Kennedy’s legislative aide is interested in working with the Coalition to pass parity legislation, Spiro added. “It is clear that having a coalition is giving us access we never had before.” Coalition Steering Committee member Kathy Muscari said she would try to schedule a January 11 meeting with the office of Senator Robert Byrd (Senate Appropriations Committee).
“After our meetings on November 28, Dan and I had a clear sense that our voice was heard and that we are now at the table,” Spiro said.
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