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
Transforming Mental Health Care by Restoring Hope
April 15, 2008
Cambridge, MA
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]
Thank you, Marianne (Dr. Marianne Farkas, Director of Technical Assistance at the Center for Psychiatric Rehabilitation), for your kind introduction and your invitation to join you today. The Center for Psychiatric Rehabilitation has been at the forefront of efforts to improve the effectiveness of people, programs, and service systems so that individuals with psychiatric disabilities can achieve their goals and dreams. Indeed, Bill Anthony's seminal article on "Recovery from Mental Illness" set the stage for all the work that has come in the 15 years since it was published when he called recovery "a simple yet powerful vision."
We are here today to learn more about how that vision is becoming reality. One of the best ways to learn what it means to recover from mental illnesses is to listen to the voices of those who have the experience. Winston Churchill said, "Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen." The individuals we serve have had the courage to tell us what recovery means to them, and we must have equal courage not only to listen, but to hear and then to act.
Hear what Russell Pierce has to say about recovery. Among his many accomplishments, Russell was the first Chair of the Subcommittee on Consumer/Survivor Affairs for the Center for Mental Health Services and he represented the United States at a World Congress on Mental Health in Santiago, Chile. Writing in Psychiatric Rehabilitation Journal, Russell said, "The protocol of recovery is much more intensive than the regime of treatment—and as is often the case, the real work is in the field, in the soul of the person, in the pasture of the home, the evidence of life, the haven of hope—and even of despair."
Russell speaks about hope, something even science tells us is essential for recovery. In his book The Anatomy of Hope, Dr. Jerome Groopman of Harvard Medical School 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, healing, and recovery. These are powerful constructs that seem difficult to quantify. And yet the President's New Freedom Commission on Mental Health made clear in its final report that the goal of a transformed system of care is recovery. To achieve this goal, the Commission said, consumers must be at the central point of care.
What does it really mean to put consumers at the center of care? The late R. Buckminster Fuller—noted futurist and inventor of the geodesic dome—said, "Whenever I draw a circle, I immediately want to step out of it."
Putting consumers at the center of care doesn't imply drawing a circle around them, with the rest of what they need to recover outside the circle. It means supporting individuals transcend so that they take full advantage of everything that makes life real and meaningful to them.
[Slide 2: HOPE]
This morning, I'd like to encourage us to put consumers at the center of care by operationalizing the word "hope." I'm loathe to add yet another new acronym to our lexicon, but just for today, here's what HOPE means to me:
It means a Holistic system that offers Opportunity for Participation to Everyone. Let's examine this more closely.
Holistic
A transformed system that supports recovery is, first and foremost, holistic. In fact, "holistic" is one of the key components of mental health recovery embodied in a consensus definition of recovery unveiled in 2006 by the Substance Abuse and Mental Health Services Administration, of which the Center for Mental Health Services is a part.
[Slide 3: Consensus definition of recovery]
The statement was developed through the deliberations of more than 110 expert panelists who came together to examine topics like recovery across the lifespan and recovery in different cultural contexts. We considered how recovery applied at individual, family, community, provider, organizational, and systems levels.
Our meeting led to this consensus definition of recovery for adults:
Mental health recovery is a journey of healing and transformation for a person with a mental health problem to be able to live a meaningful life in a community of his or her choice while striving to achieve maximum human potential.
The process of recovery builds on the strengths of each individual. It is nonlinear and self-directed. It is holistic and person-centered, and it involves personal and community respect, responsibility, and hope. It empowers consumers to make decisions that impact their lives. It recognizes the valued role of consumers in supporting and encouraging others as they continue on their own journey toward recovery.
Recovery is not an end point, however. Our definition implies a continuum of support and a breadth of services that acknowledge the whole person and not just the disorder. The scope of this definition changes our entire perspective on how we should provide care.
[Slide 4: Mental health continuum]
In particular, we can no longer afford to be reactive and respond to an individual once he or she becomes sick. We must be proactive in promoting health and preventing illness before it begins. This is the very essence of the public health approach to health care. The week that just ended was National Public Health Week, and I can't think of a better time to emphasize our focus on wellness for individuals with mental health and substance abuse conditions.
We must provide care that is focused on wellness because we know that life expectancy for individuals with mental illnesses is about 25 years less than the general population.
Further, the increased morbidity and mortality are largely due to treatable medical conditions that are caused by modifiable risk factors, including smoking, obesity, substance abuse, and inadequate access to medical care. This is simply unacceptable.
To address this issue, SAMHSA sponsored a wellness summit last fall that attracted a wide range of stakeholders, including mental health and primary care providers, researchers, consumers, family members, funding agencies, accreditation bodies, and advocates. The heart of the summit was the enunciation of a national call to action to reduce the life expectancy disparity by 10 years within the next 10 years, or what we call the "10 by 10" program. Participants also made a voluntary pledge to personally foster consumer wellness.
These efforts can include such formal activities as the healthy lifestyles initiatives in community mental health centers promoted by the National Council on Community Behavioral Healthcare. It is also important to note that individuals with mental illnesses can and should develop their own resources for healing and growth. Keynote speaker Patricia Deegan has researched consumers' use of what she calls "personal medicine" to achieve recovery goals.
Opportunities
In order to care for themselves effectively, consumers of all ages must have a credible range of opportunities to live, work, learn, and participate fully in their communities. Indeed, Russell Pierce notes that "'coping' really means 'thriving' in the community."
I'd like to go one step further and propose that it's no longer enough for us to talk about the importance of individuals with psychiatric disabilities living in the community. Instead, they must be of the community.
Writing in the April 2007 issue of Psychiatric Services, Norma Ware and her colleagues note that even when people with psychiatric disabilities live in neighborhoods alongside people without disabilities, many of them "lack socially valued activity, adequate income, personal relationships, recognition and respect from others, and a political voice. They remain, in a very real sense, socially excluded."
Adlai Stevenson once said, "Every age needs men who will redeem the time by living with a vision of things that are to be." In their aptly titled essay "A Vision of What Can Be," Thomas Nerney and his colleagues at the Center for Self-Determination tell us what it will look like when individuals with disabilities are truly of the community. They write:
People with disabilities will live with us, learn with us, love with us, and experience joy with us. They will not be forced to live with others because they share a "label." We will build an inclusive community where all people are invited, welcomed, and expected to become one of us. Tolerance is not the issue—membership and belonging are.
Membership and belonging demand that all people with have reciprocal personal relationships, not one sided-relationships with one person—the professional—telling another person—the patient or consumer—what to do. Robert Putnam, whose book Bowling Alone points out how disconnected we have become from one another, notes that the Golden Rule—do unto others as you would have them do unto you—is a wonderful example of reciprocity.
Participation
Reciprocity demands that an individual with psychiatric disabilities be a full participant in his or her own treatment. When Tom Nerney outlines the elements needed to achieve his preferred future, he points to the concept of "self-determination" as a key factor. Broadly defined, self-determination refers to the right of individuals to have full power over their lives.
One promising approach for self-determination is shared decision-making, which gives consumers a greater voice by encouraging them to partner with their health care providers to make treatment decisions. A related approach is self-directed care, which gives consumers greater economic say in how their medical dollars are spent.
SAMHSA/CMHS is studying 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.
In particular, we've held trainings with consumers on ways to control finances, such as setting up individualized budgets and using a broker or finance coach to guide decisions. Our Self-Direction Education Project includes training Web casts available on DVDs and fact sheets on mental health self-direction approaches.
We also recently awarded a contract for the development and testing of shared decision-making aids in mental health care. Shared decision-making is not a new concept in health care. However, it is not widely practiced or accepted in mental health care, in part because many providers mistakenly believe—despite evidence to the contrary—that individuals with mental illnesses are not competent to participate in treatment decisions or don't wish to do so. This simply is not the case.
The tools we develop will help individuals participate in the type of reciprocal relationships—in this case with their health care providers—that are the hallmark of successful community integration.
Doing the right things—in this case promoting self-directed care and shared decision making—is not enough. To put consumers at the center of care, we must stop doing the wrong things. I'm reminded of the Hippocratic oath, "First, do no harm."
When the National Council on Disabilities held a hearing in late 1998 to collect the testimony of people with psychiatric disabilities, they heard loud and clear that involuntary commitment and forced treatment were among the most painful and difficult experiences of people's lives. One of the participants noted that individuals who are admitted to the hospital for a physical health problem, in her words, "wouldn't dream of allowing the doctors, nurses, or nursing aides to lock them up, shock them up, tie them up, or drug them up, and the staff wouldn't do it to them."
She's right. Seclusion and restraint aren't treatment options, they are treatment failures that have no place in a transformed system of care They keep consumers at the margins, not the center of care. Individuals can't learn to manage their illnesses and their lives when they are under external control—either physical or chemical.
SAMHSA has taken a leadership role in eliminating Seclusion and Restraint thru a number of activities, including the award of 16 Seclusion and Restraint State Incentive Grants. We also developed a Roadmap to Seclusion and Restraint Free Mental Health Services, a consumer-based staff training manual that includes best practices. We plan to release a video on alternatives to seclusion and restraint later this year.
Everyone
Ultimately, a holistic system must offer opportunities for participation to everyone.
[Slide 5: New Freedom Commission vision statement]
The New Freedom Commission's vision statement makes this clear. The Commission said:
We envision a future when everyone with a mental illness will recover, a future when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any stage of life has access to effective treatment and supports—essentials for living, working, learning, and participating fully in the community.
Unfortunately, we know that discrimination, fear, prejudice, isolation and bias are powerful deterrents. Inaccurate and hurtful perceptions lead others to avoid living, socializing or working with, renting to, or employing individuals with psychiatric disabilities.
These misperceptions lead to low self-esteem, learned helplessness and hopelessness on the part of individuals and deter the public from wanting to pay for care.
Worst of all, the fear of discrimination often causes individuals, young people and whole families with mental illnesses to become so embarrassed or ashamed that they conceal symptoms—and avoid seeking the very treatment, services, and supports they need and deserve.
Research tells us that only about one-quarter of young adults believe that a person with a mental illness can eventually recover.
[Slide 6: Campaign for Mental Health Recovery]
SAMHSA's Campaign for Mental Health Recovery is designed specifically to encourage, educate, and inspire young people ages 18 to 25 to step up and support friends they know are experiencing a mental health problem. You can view radio and TV ads at www.whatadifference.samhsa.gov.
Thus far, we have distributed more than half a million copies of the Campaign brochure and have begun a concerted effort to get materials into the hands of students and peer educators at colleges and universities nationwide. In addition, we are developing multicultural campaign materials for 18 to 25 year olds who are African American, Asian American, Native American, and Hispanic American. We know that minorities have less access to mental health services and often receive poorer quality mental health care.
Wrap-up and Conclusion
Finally, this morning, I want to leave you with an important charge. The best way to instill hope for recovery in a transformed system of care is through active, enlightened, and visionary leadership.
Bill Anthony and Kevin Huckshorn just published a wonderful new book titled Principled Leadership in Mental Health Systems and Programs, in which they encourage each one of us to consider ourselves a leader. They point out that, "Every staff person can act like 'the CEO' in [his or her] own sphere of influence, no matter how broad or circumscribed, and indeed this kind of work is what will lead to successful transformation of the mental health system."
The concepts of recovery and rehabilitation are driving not only transformation of the mental health system but also the need for strong and effective leadership. Transformational leaders, Bill and Kevin note, are characterized by commitment, credibility, and capacity.
[Slide 7: Proust quote]
I know that each and every one of you here today is committed to a vision of recovery for people with psychiatric disorders, is a credible spokesperson for this cause, and has the capacity to persuade others to follow.
French novelist Marcel Proust (Prewst) said, "The voyage of discovery is not in seeking new landscapes but in having new eyes." As you return home after this conference, may you do so with new eyes that find hope in the promise of recovery for all individuals with psychiatric disabilities and the commitment to transform not only services and systems, but also hearts and minds. My support and my gratitude go with you.
Thank you. If we have time, I'd be happy to take your questions.
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