Remarks by
A. Kathryn Power, M.Ed.
Director
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration
U.S. Department of Health and Human Services
20TH Annual Alternatives Conference
Taking Charge of Transformation: Finding the Fire Within
Phoenix, AZ
October 26, 2005
PowerPoint version
Attached is the text prepared for delivery; however, some material may have been added or omitted at the time of delivery.
[SLIDE 1. Title slide]
Good evening. Tonight, we are here to celebrate. The Alternatives conference has reached a milestone—20 years of bringing consumers together in self-help and advocacy. Thousands have come to these meetings in search of alternatives to traditional mental health care. And what have they found? They have found power, hope, healing, and a community in each other. They have found the voice of empowerment…and it is beautiful.
I’m honored to share the stage with pioneers of the consumer self-help movement, including Mike Finkle, Joseph Rogers, Su Budd, Celia Brown, Jay Mahler, and Judi Chamberlain. Together with other visionaries such as Howie the Harp, they challenged the mental health system to radically rethink its treatment of consumers. They challenged more than the medical practices of the day. They also challenged the system’s view of consumers as passive recipients of care…with little to contribute to mental health planning either for themselves or others. Instead, these pioneers demanded that consumers be given their rightful role in charting the course of their own care, their own lives, and their own recovery. Some of the people on this stage engaged in acts of civil disobedience to get their message across.
The 1970s were a stormy but formative period in the history of the consumer self-help movement. A decade later, with help from the Federal Community Support Program, consumers organized the first Alternatives conference. Today, Alternatives remains as the only national conference organized by and for consumer/survivors. I’m proud to represent an agency that is part of the self-help tradition. Since its inception, the Center for Mental Health Services has supported the Alternatives conference. Thank you for inviting me to help celebrate its 20-year anniversary.
I’ve been reflecting on the theme of this year’s meeting: “Leading the Transformation to Recovery: And Still We Rise.” Your powerful theme draws upon the phoenix as a symbol of rebirth…of your unlimited potential to rise up to new ways of being, living, and making a difference. Similar to that mythical bird, you can experience a personal transformation that grows from your past but does not deny it. The past remains a source of your renewed strength and knowledge.
I am here tonight to call upon your potential to rise up even higher as leaders in mental health transformation. Who better than you to fuel the fires of change? Consumers already have ignited such concepts as r ecovery…self-direction…peer support…advance directives…cultural competence…and patient's rights. These are revolutionary concepts. They are altering attitudes and beliefs throughout the system.
We are living in an exciting time, but there still is so much to achieve. Consumers need to take the lead in showing both the mental and physical health systems what still must be accomplished. Amazing progress can be made when Americans understand that their mental health is essential to their overall health.
Consumer advocacy is your history and it is your future. The consumer self-help pioneers on this stage are leaders. Their continuing efforts are making it possible for other consumers and families to conceive of a better life and to achieve it. But now is the time for each of you in the audience to find the fire within and join them as leaders.
You don’t need an official title to be a leader. Most leaders are common people with uncommon determination. Former President John Quincy Adams defined leadership like this: “If you inspire others to dream more, do more, and become more, you are a leader.” Consumer leaders are the individuals who work continuously to achieve their full potential. They help others to achieve their full potential. They hold valued roles in their families and in their communities. They contribute. Because of their hard work and courage on a daily basis, they inspire others to have hope in recovery. They live a life full of possibilities!
You can be a leader simply by talking openly about mental illness. We know from research that interpersonal contact is the most effective way to eliminate stigma and discrimination. M any of the Web sites funded by the Center for Mental Health Services incorporate personal stories. These are true stories by real people about their recovery from mental health problems. They have chosen to share their stories to inspire others and help people understand that mental illnesses are real, common, and treatable— and that recovery is possible.
One of these Web sites is for our Elimination of Barriers initiative. Our three-pronged goal for this initiative is to:
- Eliminate stigma and other barriers to treatment,
- Build public support around the idea of recovery, and
- Emphasize the importance of having quality, community-based services accessible to people with mental illnesses.
Bill Schneider, the coordinator of Florida’s Office of Consumer Affairs, contributed his personal story to this site. I’m going to summarize an excerpt.
Bill began hearing voices while he was in college. The voices whispered to him, “You’re a nobody. You will fail in life.” His grades plummeted. He was hospitalized for schizophrenia time and again. His psychiatrist told his mother that he would be disabled for life.
Bill’s mother accepted this dismal prediction; Bill didn’t. He left home. His plan was to find a job, but he ended up living on the streets. He landed in a crisis center. It was here that his life began to change through better medicines, a caring caseworker, and peer supporters. He learned basic coping skills and how to advocate for himself.
Bill found that the help of other consumers was so vital…so important…so hope-inspiring to his recovery process that he wanted to give something back. He started to tell his own story to other consumers. Bill said, “Amazingly, I found that doing this not only inspired others, but helped my own recovery. The momentum kept building, like an upward spiral. After 20 years, I went back to college.”
Bill’s story illustrates what I mean about living a life of possibilities…about showing others what is possible through recovery. Recovery used to be about medication compliance. Now it’s about going to college or having a job or a family! Only you, as a consumer, can help others understand the possibilities of recovery. You are the evidence!
Recovery is an individual journey. Your journey may be completely different from Bill’s.
[SLIDE 2. Schneider quote]
But as he concludes, “No one can tell you how to do it—the important thing is to know that you can. You have the power and ability to make recovery a reality.”
There is such a compelling message of hope and recovery to share with those who have a mental illness. People can recover! People do recover! Consumers in recovery are the match that can light the fires of change. You are the evidence that counters myth with fact and hopelessness with hope.
SAMHSA is leading the Federal effort to spread the message of recovery. Two years ago, President Bush charged my agency, through the U.S. Department of Health and Human Services, to implement the goals and recommendations of the final report by the New Freedom Commission on Mental Health. The final report is called “Achieving the Promise: Transforming Mental Health Care in America.” The “promise” is a full life in the community for everyone. Transforming our national mental health system is the shortest possible description of what we, as a Nation, must do to keep that promise.
Achieving the Promise is based on a vision. It is a vision of a system that is consumer driven and focused on recovery. In this vision, consumers and their families will have full and equal access to the services and supports they need for recovery. What kinds of services and supports? All those services that each individual might need and want to live, work, learn, and participate fully in the community. These supports include housing, jobs, and meaningful relationships with others. The vision in Achieving the Promise is individualized and holistic.
At this point, I want to take a minute to reflect on the aftermath of Hurricanes Katrina and Rita. These two tragedies present a stark reminder of how many systems are involved in our daily lives…and how many must contribute to the recovery effort.
We at SAMHSA have been working diligently to promote recovery and build resilience among those affected by the hurricanes. One of our first actions was to launch a suicide crisis hotline to help survivors and emergency workers cope with the storm’s psychological after-effects. We also mobilized SAMHSA’s Emergency Response Center and put our Disaster Technical Assistance Center into overdrive. The States need enormous support in conducting needs assessments, providing services, supporting ongoing administrative operations, and accessing financial assistance.
We have awarded emergency grants to Alabama, Louisiana, Mississippi, and Texas to help them provide supports to individuals in need. We will extend help to additional States absorbing large numbers of people who were left homeless.
In addition, SAMHSA’s five peer support centers have provided direct onsite assistance. My sincerest thanks go to Dan Fisher, Joseph Rogers, Kathy Muscari, Christine Simiriglia, Judene Shelley, Sara Thompson, and Ramiro Guevara. I am inspired by their tireless efforts to help mitigate the potential mental health consequences of the hurricanes.
I’m proud of the way my agency and my fellow citizens have responded to the hurricanes. Americans are an incredibly resilient people. The majority of individuals affected by the storms already are moving forward with their lives. But what do they need to ease their grief and overcome their trauma? They need homes, schools, and jobs…they need to be reunited with their family and friends…they need their pets! What a powerful message about human complexity!—Our mental health, our overall health, and our opportunities to live a full life in our communities are inseparable.
Hurricane response efforts now are moving into a new phase ― from rescue and recovery to mitigation and recovery. Research suggests that up to 30 percent of adults in the most severely affected areas may develop mental and substance abuse disorders. The percentages among children may be higher. These problems are going to surface in primary health care, business, and schools…in any system dealing with the survivors.
All of these systems must recognize their vital and long-term role in mental health care. Their necessary involvement highlights one of the most basic tenets of mental health transformation: Any system that touches the lives of children, families, and adults has some responsibility—some accountability—in protecting and maintaining the mental health of Americans.
Collaboration is the foundation of mental health transformation. SAMHSA’s first step toward implementing the recommendations of Achieving the Promise was to form a Federal Partners Workgroup. Nine Federal departments and the Social Security Administration now are involved. Our group includes the departments of education, housing and urban development, justice, labor, and the veteran’s administration, as well as health and human services. The departments of agriculture, defense, and transportation are the newest members.
Together, we represent an unprecedented coalition to change the status quo of mental health. The steps that we are taking are summarized in a document called Transforming Mental Health Care in America: The Federal Action Agenda. I have made copies available for each of you.
Transformation is a powerful word with implications for policy, funding, and practice as well as for attitudes and beliefs. As a framework for transformation, SAMHSA has been working toward a consensus definition of recovery. Our understanding of recovery…what it means and what it entails…will affect changes in mental health service delivery significantly.
L ast December, SAMHSA convened a national panel of consumers and other experts. Our partner in this effort was the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research. We asked the panel to develop an operational definition of recovery. We wanted a definition that would reflect a better, broader, and more enlightened view of recovery as the expected outcome of treatment. We examined such topics as recovery across the lifespan and recovery in cultural contexts. We considered how recovery applies at individual, family and community, provider, organizational, and systems levels. Our meeting led to this definition of recovery for adults.
[SLIDE 3. Recovery definition]
Mental health recovery is a journey of healing and transformation for a person with mental health problems to achieve full human potential or “personhood” in leading a meaningful life in communities of his or her choice.
A few words based on a wealth of beliefs! The most unshakable premise is that every individual has an unlimited capacity for personal growth.
[SLIDE 4. Principles of recovery]
Several fundamental principles underlie this definition. Recovery is a process that builds on the strengths of each individual. The process is nonlinear and self-directed. It is individualized and person-centered. It is holistic. It empowers consumers to make decisions that impact their lives. It recognizes the valued role of consumers in supporting others as they continue on their own journey toward recovery. It involves society’s respect for consumers and their rights. It involves a consumer’s responsibility, courage, and hope in moving toward recovery.
The definition and its principles still are being refined. We hope to release a final consensus statement soon, but we still welcome your comments and suggestions.
Whole States are beginning to embrace a broad definition of recovery and to embed it throughout their systems. I’ll mention just two States: California and Connecticut.
Last year, California approved Proposition 63, or the California Mental Health Services Act. This landmark piece of mental health and fiscal legislation passed with the concerted effort of consumer leaders and their families. It imposes a tax on the wealthiest Californians, which will finance additional mental health services and programs for children and adults. California counties will use a model of integrated, recovery-based services to plan their expanded services. The model includes outreach, medical care, short- and long-term housing, prescription drugs, vocational training, self-help, and social rehabilitation.
A majority of Californians did an amazing thing. They voted “yes” to a recovery-based program that presented mental health care as a public responsibility and as a continuum of services extending far beyond clinic walls. They voted “yes” to the healing power of self-help and peer support. California’s new mental health initiative is transformation in action!
My second example is the State of Connecticut. Connecticut is undergoing a social, cultural, organizational, and attitudinal change around the way in which mental health services are planned and delivered. In other words, Connecticut’s mental health system is experiencing transformation. Connecticut has launched a statewide recovery initiative. It has created a recovery institute to provide information and training in a recovery model of care. In this model, mental health care builds upon each consumer’s assets, strengths, and areas of health and competence. Consumers are empowered to make choices that will build their hope in a self-directed and fulfilling life.
Transformation is real and it is happening. We are making phenomenal progress at the Federal and State levels. My examples, however, only serve to highlight why now is so important. The momentum for transformation is building—now is the time to add fuel to the fire. What will be consumed in this fire? ─ Ignorance and myth…antiquated ideas and outmoded practice…the wrongful, hurtful, and misleading idea that consumers should be judged by their illnesses rather than by their potential. And what will rise from the ashes? ― A system driven by consumers and their families and focused on recovery.
Seize the opportunity to lead transformation. Transformation is your opportunity to help drive the meaning and expectation of recovery…and to emphasize your predominant role in making recovery possible. Creating a system to meet your needs is not just a critical part of transformation ―It is the reason for undertaking the difficult but necessary work ahead.
[SLIDE 5. Lead transformation by…]
As consumers, you have a responsibility to keep transformation moving forward. A few minutes ago, I described SAMHSA’s efforts to reach a consensus definition of recovery. Respond and react to this definition.
Use it to educate others…to spread the message…to ensure that growing numbers of Americans embrace the reality that recovery is a real possibility. Use it to educate others about the essential values of self-direction and hope in recovery.
Work with providers to develop person-centered planning and individualized recovery plans. These are lynchpin activities for consumer-driven recovery on the State, local, and clinical levels. And who is better than you to develop a vibrant culture of collaboration between consumers and clinicians? As consumers, you have an amazing first-hand opportunity to educate service providers about your potential for recovery. Let each one teach one.
Remember that “you are the evidence.” Make your stories known. Few families are untouched by mental illnesses. At some point in their lives, one in five adults will experience a diagnosable mental illness. They and their families need to hear you speak openly about your own experiences.
Your journey of recovery illustrates two amazing lessons: One is the possibility of recovery and the other is what is possible through recovery! Joseph Rogers once was homeless in New York City. He now runs the National Mental Health Consumer Self-Help Clearinghouse. He is president and chief executive officer of the Mental Health Association of Southeastern Pennsylvania . Joseph Rogers recently received the prestigious Heinz Award for his visionary leadership in transforming mental health care. His life…your lives…are irrefutable evidence of your individual power and potential within recovery. And still you must rise.
More adults would recover from serious mental illnesses and more children would recover from serious emotional disturbances if they had earlier access to appropriate supports in their communities. Have you identified ways to be involved in your State mental health planning process? Your State needs to hear from you. Tell them what services and supports are needed and what helps and is valuable to recovery.
Have you identified leaders who can expand the recovery concept? The meaning of recovery is evolutionary as well as revolutionary. The next stage of recovery is to look at how individuals can achieve and maintain wellness. Wellness is a critical issue within the recovery concept. Why? – Because the life expectancy for individuals with serious mental illnesses is about 10 years fewer than the general population. The causes are many, but include suicide, a high rate of accidents, and poor health. The wellness concept cuts across other health issues and emphasizes the relationship between our mental health and our physical health. We cannot separate the mind and the body and still treat the whole individual.
Some mental health systems already have grasped the mind-body connection. In Monadnock, New Hampshire, the In SHAPE Lifestyles program for consumers is transformation in action. SHAPE is an acronym for Self- Health Action Plan for Empowerment. Each consumer’s SHAPE includes physical fitness, nutrition, and education. The program aims at improving the physical health and quality of life for individuals with severe mental illnesses as well as reducing their risk of preventable diseases.
The program has produced positive evaluation data in terms of consumer weight loss, which is of particular importance to consumers on antipsychotic drugs. The weight gain associated with these drugs can contribute to other health issues, such as obesity and high blood pressure. Recovery from a mental illness also should include freedom from negative health effects.
The recovery concept also incorporates the issue of patient rights. These rights include advance directives and the elimination of coercive treatment. I’m pleased that SAMHSA is the first Federal agency to call for a reduction and the eventual elimination of seclusion and restraints. Charles Curie, SAMHSA’s administrator, calls their use a treatment failure and not a treatment practice. This year, we have awarded grants to States to implement alternatives to seclusion and restraint.
Elimination of seclusion and restraint is possible. Two State hospitals in Pennsylvania have not used restraints, and two others have not used seclusion, in more than 2 years. Take this evidence to your State mental health planning boards and to the public.
As consumer leaders for transformation, your role is to advocate for practices that promote recovery and to advocate against those that present barriers. No one can speak to recovery with more passion, knowledge, and understanding than you can. Your story is one of vision, determination, and—most important—hope for those who seek recovery from these disorders. Your story also is a story without end, for there is so much more that you must accomplish.
And so, tonight, I urge you to find the fire within to be leaders. The blazing conviction that you can recover has given you the courage to face your own mental health problems and rise up to new ways of being. But still you must rise.
[SLIDE 6. Anderson quote]
As Marian Anderson, singer and civil rights advocate, declared, “Leadership should be born out of the understanding of the needs of those who would be affected by it.” No one understands the possibilities of recovery better than you do. No one can be more enlightened leaders than you.
As you celebrate this conference, take justified pride in the past and present achievements of consumer self-help. But let this 20th anniversary be a challenge to you. Envision an even better future for mental health care for the next 20 years, and take the lead in achieving it. Through transformation, you have an opportunity to ensure that thousands of individuals will have access to the services that enable them to lead more productive lives. You have an opportunity to encourage individuals to seek support and to be free of the shame and stigma that denies them the possibility of recovery. You have an opportunity to help other consumers and their families live a life of possibilities. Rise up to the challenge—be the leaders who light the way to transformation. Thank you.
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