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

From Promise to Practice:
Sharing the Tools for Transformation

September 27, 2006
Ellenville, NY

PowerPoint version

[SLIDE 1: Title Slide]

Good evening. Thank you for asking me to share in your event. I particularly like its title: “From Promise to Practice: Sharing the Tools for Transformation.” What an excellent summary of where we are going with mental health transformation and how we will get there. We need more conferences such as this…more opportunities to renew our commitment to transformation…to share strategies for success…and to be reminded that many, many others are working with us to achieve the same vision.

I add my sincerest congratulations to the individuals who are being recognized tonight for their promotion of recovery, rehabilitation, and the rights of individuals with mental illnesses. As I listened to the awards, the words of John Quincy Adams came to mind. He declared, “If your actions inspire others to dream more, learn more, do more and become more, you are a leader.” Each of the awardees is a leader…an inspirational role model for others in the mental health field. Think of them as human tools for transformation.

I’m going to tell you about one of my most enduring role models—Eleanor Roosevelt. It just so happens that she is a native New Yorker, born in New York City and buried about an hour from here in Hyde Park. Throughout her life, Ms. Roosevelt was a voice for the underprivileged, the unrecognized, and the underserved. She fought for civil rights, worker rights, and women’s rights.

Although not as well known, she also advocated for individuals with mental illnesses. Back in 1919, Ms. Roosevelt volunteered at St. Elizabeth’s, which was the Federal Government’s mental health institution in Washington, DC.

[SLIDE 2: Photo of St. Elizabeth's]

She was appalled by the lack of treatment for the military men she visited—back then, they had a diagnosis of “shell shock”: Today, we call it post-traumatic stress disorder.

At the time, St. Elizabeth’s was under the jurisdiction of the U.S. Department of the Interior. When Ms. Roosevelt couldn’t get Secretary of the Interior Franklin Lane to visit the hospital personally, she prodded him to appoint a commission to investigate conditions. Eventually, her activism led Congress to increase appropriations for the hospital. The Red Cross provided a recreation room. The Colonial Dames of America—a civic group that still exists—came forward with the $500 needed to begin an occupational therapy program. You could say that Ms. Roosevelt was an early advocate for a more holistic approach to treatment and recovery. Amazing, isn’t it? One person with a conscience and a commitment to the rights of others can bring about tremendous change!

Whether she was advocating for the underserved or the ill-served, Ms. Roosevelt saw it all as a struggle for human rights. She became the first chairperson of the United Nations Commission on Human Rights, which—in 1948—drafted the Universal Declaration of Human Rights. This document was, and is, a tool for social transformation. Decades later, it still stands as a moral compass for Nations around the world. Ms. Roosevelt called it her greatest achievement.

I’m going to read a few of the basic human rights laid out by the declaration. Listen…you will hear in them the drum beat of a declaration of consumer rights.

[SLIDES 3-5: Rights: SLIDE 3.]

• No one shall be subjected to torture or to cruel, inhuman, or degrading treatment or punishment.
• No one shall be subjected to arbitrary arrest, detention, or exile.

[SLIDE 4]

• Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing, and medical care and necessary social services…

[SLIDE 5]

• Everyone has the right…to participate in the cultural life of the community, to enjoy the arts, and to share in scientific advancement and its benefits.

What did you hear?—I hear a call for the end of traumatizing seclusion and restraint…needless institutionalization…inadequate housing…and harmful solitary confinement. I hear a call for greater access to a full life in the community and to evidence-based practices that offer the greatest hope of recovery. These rights are the basic rights of individuals with mental illnesses. These also are promises that we have to make real in practice.

Last year, the Substance Abuse and Mental Health Services Administration, or SAMHSA, issued a consensus statement on recovery. You will have received a copy of the statement in your conference bags.

[SLIDE 6: Consensus definition]

The statement defines 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 potential.” The statement also identifies 10 fundamental principles of recovery, including self-direction, individualized and person-centered care, peer support, respect, and responsibility. These, too, are basic rights of individuals with mental illnesses. These, too, are promises to make real in practice.

We now are distributing the statement and speaking about it at every opportunity. We are looking at how the principles can be applied in service settings. How, for example, can consumers and families be empowered to take charge of their recovery journey? How can we make the promise of self-direction real?

Currently, a gulf exists between an individual’s ability to make decisions and the opportunity to make them. Individuals with mental illnesses often are stereotyped as having impaired decisionmaking. Does this stereotype match the evidence?—No! According to the Institute of Medicine, a clear majority of individuals 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 make in collaboration with their chosen providers. Who, after all, knows better than a consumer about his or her unique strengths and vulnerabilities or the services that support recovery?

We at SAMHSA are encouraging greater research and reporting on the benefits of shared decisionmaking, which is a process by which consumers and providers work together to make informed choices among treatment options. We see this process as a concrete tool for promoting individualized plans and recovery.

At SAMHSA, we believe recovery is possible for anyone with a mental illness. Research continues to substantiate this view. Many longitudinal studies document recovery from schizophrenia and other serious illnesses. More effective treatments are being developed. We stand now at the threshold of a system of care in which recovery—and not disability—will be the expected outcome of services.

Most important, research and practice consistently confirm the value of the hope of recovery, regardless of a person’s condition. In his book, The Anatomy of Hope, Dr. Jerome Groopman describes the essential relationship between hope and healing.

[SLIDE 7: Groopman quote]

“Hope” he wrote, “is a search for freedom, both a freedom of the body shackled by disease and a freedom of the spirit to assert its dignity, of having some level of control over one’s life….To hope under the most extreme circumstances is an act of defiance that permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen.” When you read our recovery statement, you will see “hope” as the 10th principle of recovery—the foundation on which every other principle is built.

You have come together at this meeting to discuss ways to achieve a mental health system focused on recovery, which is the ultimate goal of transformation. I’ve been asked to contribute by addressing some of the opportunities and challenges that lie ahead. My remarks are based on the title of this conference, which is sharing the tools for transformation.

Eight States are represented in this audience. Each State has at least one area of mental health care in which it excels. Learn from each other! Your proven strategies for success are powerful tools for transformation. Use the examples set by other States to hammer out similar legislative and policy changes in your State.

[SLIDE 8: State graphic]

The majority of States have enacted mental health insurance parity laws. New York is among the minority of States that has not. It appears, however, that this may change! On September 15, the New York Senate unanimously passed a parity bill. The House passed similar legislation earlier this year, so it now is within the power of the New York Assembly and the Governor to move the bill into law this year. Let’s give NYAPRS a round of applause for its heroic efforts to get parity legislation passed.

All of the other States here have some form of parity. Is your State’s legislation strong enough or comprehensive enough? If not, what can you learn about effective change strategies from Connecticut or Vermont? These States both have model laws that also include coverage for substance abuse treatment.

Connecticut and Vermont, however, must work hard to address their use of seclusion and restraint. These States could learn from Pennsylvania, which has been a leader in doing away with these demeaning practices. Pennsylvania has virtually eliminated the use of seclusion and restraint in State civil and forensic facilities. All of the States can share the Pennsylvania experience with State mental health planning boards and the public. Safe and effective alternatives to seclusion and restraint exist.

A key step in moving from promise to practice is to advocate for practices that promote recovery and to advocate against those that present barriers. Eliminating the use of seclusion and restraint is a SAMHSA priority, which is demonstrated in our national action plan. We have issued incentive grants to seven States to encourage their exploration of more humane alternatives. We hope to double the number of grants during this year. In addition, we have a training curriculum entitled “Roadmap to Seclusion and Restraint Free Mental Health Services.” Our curriculum is a tool for educating providers as well as consumers about alternatives. We also will be issuing Federal regulations soon. Regulations developed by SAMHSA affect the use of seclusion and restraint in children’s residential communities. Regulations developed in collaboration with the Centers for Medicare and Medicaid Services, or CMS, will set training, use, and reporting requirements for all Federally funded health care settings.

Evidence-based practices, such as alternatives to seclusion and restraint, promote recovery—these also are tools for transformation. I’m told that you have a special interest in emerging practices that can help at-risk individuals avoid involuntary commitment. Mobile crisis intervention is one emerging practice. Assertive community treatment, or ACT, which includes crisis intervention, is another.

Both practices truly represent mental health transformation because they are consumer-driven—they offer assessment and treatment to individuals when these services are most needed and where they are needed—whether that place is the home, jail, or street. Both practices have proven effective in preventing rehospitalization.

Taking services to individuals is an effective method of transforming service delivery. Last year, Hurricane Katrina devastated both New Orleans and its health care infrastructure. SAMHSA immediately sent teams to help establish emergency mental health and substance abuse services. We located a clinic in a trailer park for individuals who couldn’t get anywhere else. We helped communities establish support groups within their populations.

This experience expanded our understanding of how individuals actually use mental health services. We often talk about the stigma that prevents individuals from seeking care. The reality of New Orleans is that when we took services to individuals in need, they took them gratefully…and asked for more.

[SLIDE 9: Resource kits]

SAMHSA has developed a resource implementation kit to help communities establish effective ACT programs. This kit is one of several we have developed to facilitate the use of evidence-based practices. We also promote greater use of such practices through another recent tool for transformation: our national outcome measures, or NOMS, for mental health.

Your State receives a block grant to provide services to individuals with serious mental illnesses. As part of the grant reporting requirements, your State now must report on the NOMs. Use of evidence-based practices is one of the NOMs. Some of the other outcome measures are employment, housing, access to services, and consumer perception of care. We designed these measures to embody meaningful, real-life outcomes for individuals who are striving to attain and sustain recovery…to build…and to work, learn, live, and participate fully in their communities.

The NOMs are a powerful tool for change because they can help the States identify the gaps between service needs and service delivery. They can be used to set outcome goals and to identify priorities for action. They also are standards by which you can hold your State accountable! Use them to pinpoint where change is most needed to ensure that consumers have access to the treatments and supports they need to achieve and sustain recovery.

We at the Federal level are exploring multiple opportunities to facilitate and compel transformation at all levels of government.

[SLIDE 10: Federal Partners Workgroup]

Nine U.S. departments, the Social Security Administration, and the Equal Employment Opportunity Commission are now members of our Federal Partners Workgroup for Transformation. As a group, we are a role model for similar collaborations that need to occur within your State.

Fourteen agencies and offices within the Department of Health and Human Services participate. One of these is CMS. The importance of Medicaid to mental health is clear. Medicaid is the largest single payer of public mental health care services in this country.

Medicaid’s dominant role has serious implications for mental health serve delivery. How Medicaid policies are decided and how payment rates are determined significantly affects the services provided and who is able to access them. Medicaid, however, is not the sole source of funding for mental health services. Justice, education, labor, social and child welfare, and other Federal, State, and local systems contribute to mental health care. The challenge for your State is this: to weave together Medicaid and other sources of support to create the range of services that help individuals recover from mental illnesses.

Options do exist with Medicaid to support elements of a recovery-based system. CMS, for example, has encouraged the States to make greater use of its home- and community-based waivers. CMS has a major grant initiative called Money Follows the Person. The program is designed to help States move people out of the institutions and into the communities. The program strongly encourages the States to use self-directed care approaches.

This past July, the Money Follows the Person program received a boost: Funding for the next 5 years will total $1.75 billion—that amount is a significant tool for transformation! Mark McClellan, the CMS Administrator, hailed the program’s expanded potential for transformation. He declared, “We’ve worked with advocates and the States for years to end the institutional bias in Medicaid, and now we’ve got the best opportunity ever to do it. We need to move as quickly as possible to make that shift across Medicaid. With new Federal funding, there is no longer any excuse for the status quo."

Mental health transformation is based on changing the status quo! Transformation ultimately is about newness…about new values…new attitudes…and new beliefs. It is about how these changes are expressed in the behaviors of institutions and people.

Through transformation, new sources of power will emerge. Can we point to any emerging source of power? Yes, we can! Peer support! No one can speak about recovery with more passion, knowledge, and understanding than consumers can. The lived experiences of consumers speak of vision, determination, and—most important—hope for those who have a mental illness. As Larry Fricks—Director of the Georgia State Office of Consumer Relations—has so eloquently stated, “Our greatest potential for improvement does not lie in mental health system. It lies within the individual who has faith that she or he can recover, does recover, and then shares that good news with others.”

Peer support services reflect the concept of shared responsibility. Peers engage other peers in services. When peers are resistant to treatment, informed encouragement becomes a tool to prevent involuntary commitment. Too often, individuals who are most at risk, such as those experiencing homelessness, have been involved with ineffective treatment. They often are demoralized by the systemic barriers they’ve encountered previously. They may have been misled that their condition is hopeless. It’s a great achievement when they 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?

Within the very near future, 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.

We soon will complete a Peer Specialist Certification Resource Kit. Our kit is designed to help train former or current consumers to be certified peer specialists. The kit—complete with a manual of detailed information on how to design, plan, implement, and manage a peer specialist program—will be sent to commissioners and advocacy groups in each State. Every State will be equipped to adopt this Medicaid-billable peer training service and certification process.

SAMHSA also promotes peer support services by funding 5 technical assistance centers and 19 statewide consumer networks. We intend to continue these vital services by issuing requests for a new cohort of grantees within the next few months. Next month, we will help sponsor the 21st annual Alternatives conference. You may recognize the conference as the only national mental health conference organized by and for mental health consumers.

There is another powerful tool for transformation that is available to every State: education or, in other words, enlightenment. NYAPRS already makes good use of education. For the past 5 years, NYAPRS has offered training and technical assistance to help community providers transform their attitudes, values, and practices. This type of outreach is essential! People need to change before systems can change.

SAMHSA is using our national anti-stigma campaign, or NASC, to educate Americans. NASC is a television, radio, and print public service advertising program sponsored by SAMHSA and developed with the New York-based Advertising Council. It is designed to address stigma among young adults ages 18 to 25 as well as the general public.

[SLIDE 11: Age of onset]

You may ask “Why are we focusing on this age group?” The answer is because this is an age of vulnerability. According to the National Comorbidity Survey Replication, half of all lifetime cases of diagnosable mental illnesses begin by age 14, and three-fourths of all lifetime cases start by age 24. We want the friends and peers of young people with mental illnesses to promote recovery by being more supportive…by creating more accepting environments…and by building stronger social support systems. We want to enlighten this generation so that stigma and discrimination ends now and with them!

The tagline for our campaign is “What a difference a friend makes.” Everyone deserves a friend—someone who can share the reciprocal joys of being accepted for who they are and what they can contribute. Toni Morrison is the African-American author of Beloved. She wrote touchingly about a friend’s ability to help restore a sense of self. Morrison wrote “She is a friend of my mind…The pieces I am, she gathered them and gave them back to me in all the right order.” That’s the difference friends can make—friends help keep us together so that we can move forward with confidence, courage, and hope.

We expect to launch the NASC ad program in November. As preparation, we scheduled four regional meetings about our campaign in September. Our goal is to equip State and local attendees to partner with SAMHSA in implementing the campaign and promoting anti-stigma efforts on the State and local level. Nearly every State here attended a meeting.

Transforming our mental health system is a long-term process. We are not engaged in a quick fix or a piecemeal effort. We are working to build a different future for mental health care and for those who have a mental illness. First, we have to lay an entirely new foundation in how Americans view mental health, mental illness, and recovery.

Real transformation takes time…the time necessary to embed new attitudes, values, and behaviors in practice. John Kotter, the author of Leading Change, estimates that it may take from 3 to 10 years before change sinks down deeply into the culture of an organization or system.

We, however, should find reasons to celebrate as we proceed. A celebration of progress is important, not just for providers and consumers, who might get discouraged by the pace of change, but for others as well. In August, SAMHSA hosted our second annual Voice Awards. Our awards recognize excellence in two categories:

• One is film, television, and other broadcast media that give a voice to people with mental illnesses by incorporating dignified, respectful, and accurate portrayals of these people into media productions.

• The other is contributions made by consumer leaders who use their own lived experiences to raise awareness and understanding of mental health issues.

The Voice Awards celebrate storytelling—a time-honored tool for entertainment that works equally well for transformation. Stories have power. They illustrate what is true about mental illnesses: These illnesses are real, common, and treatable. They affect individuals of all ages, races, and incomes. Those individuals who have an illness are parents, siblings, friends, and coworkers. Stories also reinforce another key message: Individuals with mental illnesses can lead full lives…and deserve the same rights and responsibilities as other contributing members of their communities.

So where do these rights and responsibilities begin? Where should we take our strongest stand for mental health transformation? Ms. Roosevelt asked a similar question of the United Nations. Where, she asked, do the rights of a person begin? She answered her own question with these words:

[Human rights begin] “in small places, close to home—so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person: The neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, and equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere.”

Reflect on those words for a moment—every individual is entitled to justice, opportunity, and dignity without discrimination within the context of his or her own unique life and within his or her community.

We begin to transform mental health care at the personal level—within ourselves. We first take whatever steps are necessary to ensure that our actions embody treatment that is consumer-centered and focused on recovery. Systems change as people change. You—as consumers, peers, providers, and policymakers—have the greatest, the most immediate, and the most personal opportunity to make a real difference in transforming promises into practices. Expand outward from there—into your communities, your State, and our Nation.

[SLIDE 12: Roosevelt quote]

As Eleanor Roosevelt observed, “The future belongs to those who believe in the beauty of their dreams.” You, just like the people we honored earlier this evening, can help to create the future as role models and leaders for change. You, too—through your vision, commitment, and action—can inspire others to dream, learn, do, and become more on behalf of individuals with mental illnesses. When moving from promise to practice, you are the most powerful tool available for mental health transformation. Thank you.