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
Master Gardeners of Your Life
October 10, 2007
St. Louis, MO
[Thank Pat Risser for his introduction.]
To all of you—Thank you for including me in your conference once again. Each year, I’m humbled by your stories of personal triumph… and inspired by the healing and self-help that is so evident. To paraphrase the words of James Allen, a little known British writer of the last century, each of you has discovered that you are the master gardeners of your own souls, the directors of your own lives. That is as it should be. Each person’s journey of recovery is unique; each person should be able to choose how he or she moves towards a personal destination.
Similar to last year, I’m challenging you to do more…for yourselves, your peers, and for future generations. I’m asking you to be the master gardeners of transformation… to nurture and cultivate a culture of recovery until it grows and spreads to all individuals affected by mental illnesses.
Our Nation is engaged in a mighty effort more commonly referred to as “mental health transformation.” Through transformation, we are creating a new mental health system that places you, the consumer, at the heart of care. In this system, recovery is the goal rather than symptom management. “Treatment” has a new meaning that considers the needs of the whole person. These needs may be a stable job…safe housing…reliable transportation—all of the services and supports that promote and sustain recovery and make it possible for consumers to lead a valued life in their community.
But…if consumers are to be at the heart of care, you also must be at the leading edge of change. It is your needs, your desires, and your goals for recovery that must drive transformation. It is your knowledge about what works in promoting recovery that must guide planning, implementation, and evaluation of the services offered.
Two years ago, CMHS introduced a statement on recovery that was developed by a national panel of consumers and other mental health experts. The statement reads,
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.
Several principles underlie this statement. Recovery is a process that builds on the strengths of each individual. This 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…and it involves a consumer’s responsibility and courage in moving toward recovery.
Recovery also is based on the principle of hope. Dr. Jerome Groopman is the author of The Anatomy of Hope. In his book, he explores the essential relationship between hope and healing. He writes, “Without hope, recovery can seem like an elusive goal, a quest that demands too much of our body, our minds, and our spirit. But hope gives us the strength to fight for that better life. Hope helps us overcome hurdles that we otherwise could not scale, and it moves us forward to a place where healing and recovery can begin.”
Hope is the ground in which recovery takes root. As consumers, you have a vital role in creating hope in others. 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 recovery experiences. They need to hear the truth: people can and do recover from serious mental illnesses.
Even now, with all of our advances in medicine and technology, we have a generation of misinformed youth. In a recent HealthStyles survey, only around one in four of people ages 18 to 24 believe that a person can eventually recover from a mental illness. SAMHSA is working to uproot this myth through a national public service campaign targeted at this age group. Our hope is that we can educate young adults to support their friends who have an illness, thereby promoting a societal change toward greater acceptance.
The misconceptions that surround mental illnesses remain the greatest barriers to recovery. These barriers include learned helplessness and loss of hope among consumers, paternalism by providers, and inadequate funding and limited services by government agencies. These are weeds in our mental health system. Eradicate them by working to transform our mental health system.
Begin on the most personal level—transform the way you think about yourself and your future. Take care of yourself.
One way to take care of yourself is to avoid addictive substances. Twenty-four percent of Americans have a diagnosable mental illness. This 24 percent consumes about 38 percent of all alcohol, 44 percent of the cocaine, and 40 percent of all cigarettes in this country.i Consumers are about twice as likely as others to smoke.ii All of these chemicals have serious side effects that can complicate and undermine recovery. Choose health, and control the substances that you put in your body.
Another aspect to taking care of yourself is this—to be as independent as possible. Many consumers have been trained by well-meaning family members, providers, and society at large to let others dictate their care. When consumers internalize this lack of control…when we begin to accept the myths associated with mental illnesses…learned helplessness can develop. Learned helplessness is a barrier to recovery. The apathy, depression, and loss of self that characterizes learned helplessness can be just as disabling as a serious mental illness.
The Institute of Medicine, the prestigious group affiliated with the National Academies of Science, has found that a majority of consumers are capable of making health care and other life decisions. There are serious choices to be made—choices about treatments and medications…choices about living in a community and about required supports. These are decisions that consumers should be making in collaboration with their chosen providers.
One promising approach on the horizon is shared decisionmaking, which gives consumers a greater voice in treatment settings. A related approach is self-directed care, which gives consumers greater economic say in how their medical dollars are spent.
SAMHSA studied innovations in both approaches. We’ve examined models being used successfully in other disability areas to identify how we can adapt them to mental health care. We’ve held trainings for consumers on ways to control finances, such as setting up individualized budgets and using a broker or finance coach to guide decisions. We’re also looking to award a contract for the development and testing of additional decisionmaking aids. Our goal is to build the tools that can transform roles from passive recipient to educated and active consumer of care.
When it comes down to it, transformation is not merely a matter of changing government policies, practices, and funding. Instead, transformation is about changing ourselves so we can all be the leaders of change. Some consumers fear speaking out because of isolation and discrimination…or they fear losing whatever services they receive. In transformation, we’re all asking everyone to see the alternative—the gains that can be made by giving voice to your experience, desires and wishes.
Robert Quinn is author of Deep Change: Discovering the Leader Within. In his book, he writes about the courage it takes for an individual to participate in transformation. Quinn observed that, “the path [to change] is not paved with familiar procedures. This tortuous journey requires that we leave our comfort zone and step outside our normal roles. In doing so, we learn the paradoxical lesson that we can change the world only by changing ourselves.”
Changing yourselves to change the world is quite a challenge, but well within your abilities. Think about it: Why are you here?—Because you believe in your unlimited capacity for growth…because you find power, hope, healing, and a sense of community. Show the rest of the world the respect you have for yourself and for each other. Act. Advocate. Be the evidence.
Take leadership roles in your State mental health advisory board. Educate your legislators about the services and supports that promote recovery. Tell them about the importance of primary health care and housing, and of employment and transportation.
Speak out for Medicaid reform. Congress passed the Deficit Reduction Act in 2005. This law gives the States greater flexibility in reforming their Medicaid system, such as creating opportunities for self-directed care. Medicaid, as well as Social Security, resources can be used to help consumers go back to work or to school. Encourage your State to explore these options and—equally important—to inform consumers that they exist.
The power of consumers to accomplish change already can be seen in States across the United States.
Alabama recently became the first State to receive Federal approval to allow self-directed personal assistance services as a feature of its Medicaid plan. This move eliminates the need for repeated requests for special waivers and it allows Medicaid beneficiaries to have more control over the care they receive. Consumer control translates into fewer unnecessary institutional placements, higher levels of satisfaction, fewer unmet needs, less worker turnover, and an efficient use of community services and supports.
On Our Own of Maryland has established a pilot project on self-directed care for mental health. Consumers enrolled in the program receive a set amount of money, which they can use to support their recovery plans. Use of the money is flexible. For example, a consumer can use the money to join a health club or to buy clothes for a job interview.
Missouri created working groups for each of the goals for transformation described in the final report by the New Freedom Commission on Mental Health. Consumers are represented on each group and on the Leadership Team. The next phase is statewide public meetings to develop a comprehensive mental health plan. Consumer representatives will be hosting many of the meetings.
Massachusetts just funded three Recovery Learning Communities that will be peer operated.
These examples have special meaning to SAMSHA. Each effort is an outcome of our State Incentive Grants for Mental Health Transformation program. Our objective in establishing this program was to work with the States to identify and share programs that work! Is the program a success?—Yes…because consumers are guiding the gains being made.
Let your voice also be heard at the Federal level. Work with SAMHSA and the National Institute of Mental Health, our sister Federal agency. Get on the advisory boards for the Social Security Administration, the U.S. Departments of Labor, Justice, and Education, and all of the other Federal agencies that have a role in providing recovery-based services. Issues such as wellness cut across multiple Federal agencies and demand a collaborative response.
Transformation of our mental health system is both revolutionary and evolutionary. New issues will continue to rise as we continue to move forward. My agency is looking to you to help us answer these questions:
What can we do to promote wellness and reduce early mortality? Last month, SAMSHA hosted a national summit on wellness to address this question. Our minds and our bodies are inseparable. Recognizing this connection, and finding ways to collaborate across all disciplines, will increase a person’s hope in recovery from any illness—physical or mental.
How can we address public views related to violence and mental illnesses? The shooting at Virginia Tech has brought this issue to the forefront. That incident was a horrific tragedy…but it also was an aberration. We cannot let it set back the progress we have made in changing public perceptions about mental illnesses.
The most effective way to counter myths and misconceptions is personal contact with an individual who has a mental illness. Should we foster self-disclosure, even while recognizing that this holds risks for consumers? Perhaps this is what Quinn had in mind when he wrote about the heroes of transformation…individuals who “courageously journey to a strange place where there are lots of risks and much is at stake.”
The final question I’ll raise is this one: How can we identify and build consumer leadership to foster recovery? SAMHSA funds 5 peer technical assistance centers and 19 statewide consumer networks. Our challenge now is to develop these resources, or create additional ones, to assure consumer leaders are at the forefront of systemwide change.
This last question is complicated by the changing face of mental health care. Consumer leaders must be as diverse as the people served by our mental health system. This is the only way we can ensure that the needs of all individuals can be met. These individuals include ethnic and racial minorities, who are underrepresented within the consumer movement…but over-represented among those with serious mental illnesses. They include older Americans and the 83 million aging baby boomers that soon will place an unprecedented demand on our behavioral health services. They also include the thousands of brave soldiers returning from Iraq and Afghanistan with mental health problems. Who among you are the leaders who will speak on their behalf?
This much we know: Our mental health system will serve consumers best when consumers have control and choice over their own care. Become the master gardeners of transformation, the directors of your lives, and help our Nation reap a harvest of hope and recovery. Thank you.
i Schizophrenia.com. (May 24, 2005) citing “Mental Illness and the Demand for Alcohol, Cocaine, and Cigarettes,” Economic Inquiry.
ii Karen Lasser, M.D.; J. Wesley Boyd, M.D., Ph.D.; Steffie Woolhandler, M.D., M.P.H.; David U. Himmelstein, M.D.; Danny McCormick, M.D., M.P.H.; David H. Bor, M.D. (2000). Smoking and mental illness: A population-based prevalence study. JAMA. 2000;284:2606-2610.
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