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

Remarks to the Consumer Network regarding leadership and empowerment

March 16, 2007
Miami, FL

[Thank Ms. Sandra McQueen-Baker, Coordinator of the Consumer Network, for her introduction.

Good morning. Nearly four years ago, I became the director for the Center for Mental Health Services, within the Substance Abuse and Mental Health Services Administration (SAMHSA). I arrived in Washington, D.C., just one month after the President’s New Freedom Commission on Mental Health released its final report, 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.

Transforming the way we view, provide, and finance public mental health care in this country quickly became my new job description. As I have pursued this goal, I have grown even stronger in my belief that change is both possible and crucial. For our country to be whole and healthy, we must ensure that all individuals with or at risk for a mental illness can achieve their full potential…without discrimination and with full access to the services and supports that make a life in their community possible.

I was invited here today to speak about consumer leadership and empowerment in transforming the mental health system. These really are a single topic. Consumers possess an amazing power to lead change…not just to change their own lives but to change the lives of others as well as the overall mental health care system. Their experiences are the key to what works…and doesn’t work…in promoting and sustaining recovery. Consumers are the bridge between the system as it exists now…and the system as it should be.

Consumer involvement is at the very center of change, so I am going to speak directly to consumers about the ways in which you can and should be involved in transformation. Transforming mental health services to meet your needs is more than a critical part of transformation ? It is the reason for undertaking the difficult but necessary work ahead.

Consumer leadership and empowerment are the expression of goal 2 of Achieving the Promise. That goal is “Mental health care is consumer and family driven.” The New Freedom Commission saw no limit to your potential to bring about change, from the personal to the national level. The Commission envisioned your influence as similar to that of a stone dropped in the water, with ever-expanding ripples of insight and input spreading out until your contributions touch the very edges of our system of care.

Your role begins at the most personal level — taking charge of your recovery plan. Transformation is based on a vision of mental health care that embraces two fairly recent and radical concepts: recovery and consumer-driven care. “Recovery” from a mental illness is not defined in the traditional medical sense of a “cure.” Instead, recovery is an extremely personal journey of healing and transformation that enables individuals to attain the life goals they set for themselves.

Consumer-driven care upsets another traditional view —one in which consumers are seen as the passive recipients of services. This viewpoint has proved both wrong and harmful. In practice, it can impede recovery. Having hope and the opportunity to regain control over your own life is vital to recovery. There are serious choices to be made about care — choices in providers and services…choices in medications…choices in required supports, such as housing and employment. Who has more right, or insight, into making these choices than you, as the person most affected by the outcome?

Currently, a gulf exists between your ability to make decisions and your opportunity to make them. Individuals with mental illnesses often are stereotyped as having impaired decisionmaking. Does this stereotype match the evidence? — No! The Institute of Medicine, which is part of the National Academies of Science, took a close look. A clear majority of consumers are capable of making health care and other life decisions. As consumers, you should expect and demand to participate in decisions that affect your recovery.

Many consumers develop their own resources for healing and growth. In 2005, Dr. Patricia Deegan, a well-respected psychiatric survivor and activist in the patients' rights movement, led a study at the University of Kansas. Her study looked at the ways consumers use prescribed medicines to sustain resilience.

The researchers found that many consumers value “personal medicine” over medications. Personal medicine was found to be those activities that individuals develop to give purpose and meaning to their lives and that serve to raise their self-esteem, decrease symptoms, and avoid unwanted outcomes such as hospitalization. Jobs and self-care strategies such as exercising are examples of personal medicine.

The study ended with this conclusion: “Medication adherence may be improved when clinicians inquire about patients' personal medicine and use pharmaceuticals to support, rather than interfere with, these self-assessed health resources.” This is another example of how recovery is promoted when consumers partner with providers in determining care.

As individuals, we are well aware of our own unique strengths and vulnerabilities. This is knowledge that we use to manage our overall health and well-being. In mental health care, as in any health care, this knowledge should be shared with providers to map out the best way to promote and protect recovery.

We at SAMHSA are encouraging greater research and reporting on the benefits of shared decisionmaking. This is a process through which consumers and providers work together to make informed choices among treatment options. This summer, we have invited national experts to a meeting on shared decisionmaking. Our objectives are to look at what it is, how the process is being used in general health care, and how SAMHSA can promote its applicability to mental health care.

We also are developing tools to help consumers take greater responsibility for their own recovery. Webcasts and fact sheets on self-direction are available through the SAMHSA Web site. Florida has been on the leading edge of using self-directed care as a truly transformative means of financing and organizing service delivery.

We also are developing a training manual to help consumers through self-care and recovery planning. And, of course, we continue to work for the reduction and elimination of seclusion and restraint (S&R) as the antithesis to consumer-driven care. These are not treatment practices, but treatment failures. In the words of one consumer,

“The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that [treatment] might offer me something helpful; I didn’t want any of it if that horrible experience was going to be part of the package.”

We have issued grants to seven states to encourage their exploration of more humane alternatives to S&R. Several months ago, we released a training curriculum entitled, Roadmap to Seclusion- and Restraint-Free Mental Health Services for Persons of All Ages. Our curriculum describes best practices in the use of trauma-informed care and other ways to avoid the use of techniques that can harm more than help. Many best practices, such as advance directives, are in the hands of consumers. This same curriculum also could be valuable in reducing the use of S&R in other settings, such as criminal justice.

One area in which consumers have incredible power to promote transformation is by helping to change the lives of others as peer supporters. Peers can be highly effective in defusing crisis situations. Peers also can help prevent involuntary commitment by encouraging other consumers to seek services and supports that may be helpful.

Too often, consumers who are most at risk, such as those who are homeless, have had poor experiences with treatment. They may be demoralized by barriers to care encountered previously. They may have been misled that their condition is hopeless. It’s a great achievement when some consumers find the courage to walk through a clinic or program door. That achievement alone needs to be acknowledged and in some way celebrated. Who better to acknowledge that achievement than someone who already has gone through the door…and found recovery?

SAMHSA soon will complete a Peer Specialist Certification Resource Kit. We will send the kit — complete with a manual of detailed information on how to design, plan, implement and manage a peer specialist program — to commissioners and advocacy groups in each state. Every state will be equipped to adopt this Medicaid-billable peer training service and certification process.

Within the very near future, the Centers for Medicare and Medicaid Services (CMS) will issue a "Dear State Medicaid Director" letter. We have been working extremely closely with CMS on this letter because it is groundbreaking — this letter will document the support of CMS in funding peer support services.

As consumers, you must believe in your power to lead change, for yourself and for others. 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.”

You may have to step outside of your comfort zone to be a leader. For example, you can speak more openly about your mental illnesses. When it comes down to it, the process of transformation isn’t confined to bureaucratic policies and practices or funding mechanisms and legislated boundaries. Meaningful change is largely about changing minds.

We know from research that personal contact is the most effective way to eliminate stigma and discrimination. Many 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 inspirational stories to help others 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:

1. Eliminate stigma and other barriers to treatment,
2. Build public support around the idea of recovery, and
3. Emphasize the importance of having quality, community-based services accessible to people with mental illnesses.

Bill Schneider is the coordinator of the Office of Consumer Affairs in Broward County, Florida. I’m going to summarize the personal story he contributed to the site.

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 is an excellent example of leading by doing…of being a role model who enables other consumers to dream more, do more, become more and hope more. Recovery used to be about medication compliance. Now it’s about pursuing your lifetime goals, such as having a job or a family!

Your journey may be completely different from Bill’s. 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.” That’s consumer power. Share your triumphs…and share your challenges! Your greatest gift to another may be the encouragement someone needs to persevere through a tough time.

You have such a compelling message of hope and recovery to share with others. People can recover! People do recover! You are the evidence. Your experiences can replace myth with fact, discrimination with acceptance, and hopelessness with hope.

I’m going to digress briefly to discuss one ugly myth that we need to confront with some urgency. That myth is that individuals with mental illnesses are violent. In actuality, consumers are more apt to be the victims than the perpetrators of crime. Last month, a young man with a diagnosed illness took his life and the lives of many others at Virginia Tech. This was a horrific tragedy…but it also was an aberration. We cannot let this incident set back the progress we are making to transform mental health care. Individuals with mental illnesses need their community’s support and understanding, and not fear and rejection due to the actions of one person.

The tragedy of Virginia Tech presents an opportunity to educate the public about the reality of mental illness and mental health. What is the reality? — Recovery from mental illnesses is possible when people have access to a range of services and supports. This should be our time to encourage others to reach out for help, and for families and friends to support the work of recovery. This should be our time to demonstrate that it is acceptable — and essential — to talk openly about mental illnesses and recovery so that people understand that there are treatment options and the very real hope for a better life.

Transformation is your call to action. Any step you take toward recovery…or to help others recover…or to chip away at the stigma that surrounds mental illnesses…contributes to the goal of transforming the mental health system. Consumer-driven care is based on your unique knowledge and insights into the strengths and weaknesses of the current system. By participating, you will be a necessary and vital source of innovation and direction.

I have a few suggestions of where your leadership is needed across the system.

Identify ways to be involved in your state and county mental health planning process. 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. Tell your mental health board what services and supports are valuable and needed to promote recovery. Any individual with a mental illness should have access to treatment that is effective, respectful of personal dignity, and fosters independence.

Work within the system to expand the knowledge base. An excellent starting point is to educate state and county planners about the effects of culture and diversity on services. Racial and ethnic minority groups are underrepresented within the consumer movement…even though they are over-represented among those with serious mental illnesses. Encourage minorities to take an active role in mental health planning.

Identify consumer leaders who can expand on 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 life expectancy for individuals with serious mental illnesses is about 25 years less than the general population. The causes are many, but poor health — and particularly cardiovascular problems — are the primary reasons.

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. To address this issue, SAMHSA will be sponsoring a 2-day meeting later this year to involve the full range of stakeholders, including consumers. We intend to complete a national action plan as a result of our discussions. Our hope is that this meeting and action plan will encourage others to make the promotion of wellness for mental health consumers a priority.

Some mental health systems have already 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 to improve the physical health and quality of life for individuals with severe mental illnesses as well as to reduce their risk of preventable diseases.

The program has produced positive outcomes in terms of consumer weight loss, which is of particular importance to consumers on antipsychotic drugs. Weight gain associated with these drugs can contribute to other health issues, such as obesity, diabetes, and high blood pressure. Recovery from a mental illness also should include freedom from negative health effects. Is there a similar program here in Miami-Dade County? If not, advocate for one.

On a more personal level, develop a vibrant culture of collaboration with providers. Work with them to develop person-centered planning and individualized recovery plans. These are linchpin activities for consumer-driven recovery on the state, local and clinical levels. These documents also are your first-hand opportunities to educate providers about your role and responsibility in achieving recovery.

Remember that “you are the evidence.” Become peer supporters. 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 so they, too, can experience hope of recovery.

Eleanor Roosevelt once said,

“The course of history is directed by the choices we make, and our choices grow out of the ideas, the beliefs, the values, and the dreams of the people. It is not so much the powerful leaders that determine our destiny as the much more powerful influence of the combined voices of the people themselves.”

That quote is from an essay she called “Tomorrow Is Now.” She picked the title to emphasize that the future is shaped by the actions we take today. You are the people. Combine your voices to create a mental health system that better serves your needs. Create, expect and demand opportunities for meaningful involvement.

What is meaningful involvement? It is decisionmaking activities that are:

• Beyond tokenism, with enough individuals involved to have real influence,
• Beyond simply reviewing and commenting on actions proposed by non-consumers,
• Beyond giving advice, with full participation in governance and policymaking, and
• Beyond just signing off on treatment plans and instead, directing one’s own recovery.

Consumer empowerment is a call for human rights — for your right to be contributing and valued members of your community. Similar to other social change movements, such as women’s rights and civil rights, consumer empowerment is coming about slowly, through the dedication and hard work of many people. I’m proud to share the podium with the outstanding individuals in Miami-Dade County who helped establish the Consumer Network and other consumer involvement opportunities.

Positive change is occurring…and will continue to happen…as the system continues to learn from the individuals it serves. My challenge to you is this: make your voices heard. Be leaders of transformation for yourselves, for your peers and for the thousands of others with or at risk of mental illnesses. As Robert Quinn wrote in Deep Change: Discovering the Leader Within,

“Though we often prefer to believe that nothing can be done about the…problems we face, there comes a time when we have to take on the system because the system needs to change. There comes a time when we need to ‘just do it.’”

This is the time to transform our mental health system, and you are the people to do it. Thank you.

And now I’d like to hear from you. What role do you see for consumers in leading transformation?

[Note: About 30 minutes available for questions and answers.]