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

Living With Dignity As Part Of A Community

September 11, 2007
Washington, DC

Thank you, Bob (Robert Bernstein, Executive Director, Bazelon Center for Mental Health Law), for your kind introduction and your invitation to address State Olmstead coordinators, who individually and collectively are helping lead this country’s efforts to ensure full community integration for people of all ages with mental and substance use disorders. Certainly the Bazelon Center has been at the forefront of these initiatives for three decades. Your vision of an America “where people who have mental illnesses or developmental disabilities exercise their own life choices and have access to the resources that enable them to participate fully in their communities” speaks to your commitment to the work we do and the people we serve.

I’m especially pleased to be with you today because your topic “Living with Dignity as Part of a Community” signals a seismic shift in our thinking. We have, in the 8 years since the Supreme Court’s precedent setting Olmstead decision, moved beyond what is often called “first order” to “second order” change.

Writing in the Summer 2007 issue of Psychiatric Rehabilitation Journal—an issue devoted to mental health recovery and system transformation—noted recovery researcher Steven Onken and his colleagues explain, “When an individual recognizes that recovery is possible, a first order change has occurred. A second order change brings about a change within the system itself.” Clearly, second order change is what the New Freedom Commission on Mental Health had in mind when it concluded that nothing short of fundamental transformation of this Nation’s mental health system would lead to the consumer-centered, recovery-focused, evidence-based system it envisioned.

I’d like to propose another type of first and second order change. When we recognized the right of people with psychiatric disabilities to live “in” the community—that was a first order change. Indeed, soon after the Olmstead ruling, many States developed plans for moving individuals with disabilities out of segregated institutions and into community settings with appropriate services and supports. The focus of the federally mandated Protection & Advocacy Systems and Client Assistance Programs shifted from ensuring the safety and security of people who lived in institutions to seeking appropriate discharge planning and transition services to facilitate movement from institutions to the community.

But now we know that living in the community is necessary but not sufficient. For a second order change to occur, people with disabilities of all types must be “of” the community.

Listen to how Norma Ware and her colleagues, writing in the April 2007 issue of Psychiatric Services, describe the difference:

Despite decades of deinstitutionalization and the best efforts of community mental health services, individuals with psychiatric disabilities living outside the hospital may be described as in the community, but not of it [emphasis added]. They may live in neighborhoods alongside people without disabilities. Their residences may resemble those of their neighbors. Yet many people who are psychiatrically disabled 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.

Community Integration
What does it mean to be “of” the community The passage I just read gives us the sense that being of the community means having socially valued activity, adequate income, personal relationships, recognition and respect from others, and a political voice. Equally important, notes Mark Salzer, director of the University of Pennsylvania Collaborative on Community Integration, “Community integration is the opportunity to live in the community and be valued for one’s uniqueness and abilities, like everyone else” [emphasis added].

Like everyone else. We all want personally fulfilling social and family relationships and economic independence—or put more simply, a home, a job, and a date on the weekend. A person with a psychiatric disability is as capable of living a full life in the community as anyone else, and your role as Olmstead coordinators is both simple and complex—to remove attitudinal barriers and establish appropriate supports to make this possible. The goal, as Dr. Dan Fisher shared with you, is that people with psychiatric disabilities should flourish, not merely function, in their communities.

Community Services
So what are the appropriate supports that people with mental disorders need to be full participants in their communities? Clearly, what we often refer to as “community services” are not enough. Indeed, as John McKnight noted in a seminal piece titled “Redefining Community,” it is possible to be surrounded by community services and still be isolated from the community. “Community services,” Professor McKnight says, “involve people in community relationships.”

Community relationships are those that are reciprocal, notes Robert Putnam, author of the book Bowling Alone. Reciprocal relationships don’t involve one person—the professional—telling another person—the patient or consumer—what to do. Putnam points out that perhaps the best definition of reciprocity comes from Yogi Berra, who said, “If you don’t go to somebody’s funeral, they won’t come to yours.”

Think of the ways in which you are involved in community relationships. Perhaps you and your neighbors get together for a potluck supper once a month. People with psychiatric disabilities need affordable, accessible, and appropriate housing—the same kind of housing you or I might live in—in neighborhoods of their choice.

A group home may be in a neighborhood setting, but it can still be very much isolated from the life of the community. This is one of the reasons why the Louisiana Protection & Advocacy System, together with other P&As, is working to help people with disabilities who were forced after Hurricane Katrina to reside in State hospitals, nursing facilities, and developmental disability centers return to the community. When they live in facilities, they are “in” the community, but not “of” the community.

We know that even people with the most serious psychiatric disabilities can be successful in independent housing with supports. If you heard Sam Tsemberis’s presentation, I know you were likely impressed with the work he is doing in New York City. Yet Sam is very modest about what his program does. “We listen to people,” he says. When people say they want housing, Pathways to Housing finds them a place to live.

We also have opportunities for community relationships at our place of employment. Like us, individuals with psychiatric disabilities want and need to work. We know that given the services and supports they request, even people with the most significant disabilities can participate successfully in the labor market in a variety of competitive jobs.

However, despite their desire and ability to work, people with psychiatric disabilities have the highest rate of unemployment of any group with disabilities. Rather than receiving evidence-based employment support services, such as supported employment, many people with psychiatric disabilities spend their time in treatment-focused day programs or segregated work therapy programs. Others who do work are underemployed.

You have a couple of opportunities at this conference, including a workshop with Marti Knisley of the Technical Assistance Collaborative in Boston, to learn about successful State and local strategies to expand employment opportunities for individuals with mental illnesses. Remember that in addition to helping people with psychiatric disabilities escape poverty and avoid homelessness, a job provides valuable social support, which is an important protective factor. We are healthier as individuals, and our communities are stronger, when we are connected to one another.

Finally, our most important relationships are with our families. Mental disorders may disrupt family relationships, particularly when parents are forced to relinquish custody of their children to receive needed services. This is simply unacceptable.

I’m glad to see you had a workshop on effective community programming for children and their families. In addition, Beth Stroul—whose influential work with Robert Friedman helped us define a system of care for children and youth with serious emotional disturbances—is leading a workshop on financing community services for children. We must preserve the most fundamental of relationships if we hope to meet not only the letter but the spirit of the Olmstead decision.

Looking toward the Future
If living with dignity as part of a community is the goal for people of all ages with psychiatric disabilities, and we know what services they need to do so, how do we make this happen?

In Alaska, they’re making it happen by requiring that it be so. Alaska’s Comprehensive, Integrated Mental Health Plan for 2006-2011 has four results areas—health, safety, economic security, and living with dignity. The plan defines living with dignity as “being valued and appreciated by others for the choices and contributions one makes and being able to take advantage of the opportunities available to all Alaskans.” The Comprehensive Plan focuses on three issues related to life with dignity—community participation, housing, education, and training—and it includes performance indicators to measure progress in these three areas.

In essence, the State of Alaska and its mental health stakeholders have set out a vision of a preferred future for all Alaskans with psychiatric disabilities—one in which they are productively engaged in meaningful activities throughout their communities; in which they have appropriate, accessible, and affordable housing in communities of their choice; and in which they receive the guidance and support needed to reach their educational goals.

Alaska has begun to codify the vision of the future set forth by the President’s New Freedom Commission on Mental Health when it noted:

We envision a future when everyone with a mental illness can 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.

Several writers have given us a wonderful glimpse into what this future will really look like. In their article called “An Affirmation of Community,” Thomas Nerney and his colleagues at the Center for Self-Determination articulate this brave new world in a chapter aptly titled “A Vision of What Can Be.” When people with disabilities are truly “of” the community, Nerney says:

We will interact with, bump into, get to know and be friends with people with disabilities in all of the places and occasions where we spend our time. No one will be missing. In our churches, service clubs, sports teams, places of work, breakfast clubs, fall fairs and shopping malls, we will find ourselves in the presence of and getting to know people with disabilities.

Further, he notes:

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 [emphasis added].

Membership and belonging. Again, we can recognize in ourselves the same dreams and goals that all individuals share—regardless of whether they have a disability or not.

Liz Sayce, author of the book From Patient to Citizen, also sets forth her sense of what the future will hold for people with psychiatric disabilities. In a chapter called “A Dream of Inclusion,” she says:

In this imagined future, the term “community care,” as meaning “not located in a hospital,” would have fallen into disuse. It would seem laughingly euphemistic, given its currency at a time when [consumers] were so massively excluded from “communities” ranging from the workplace to the family.

She adds:

The presumption in business and community organizations would be that disabled people belonged in any group—in every group—and that it was everyone’s business to know how to talk and work with them. [Further], old stereotypes—like the myth that people with mental health problems are in general violent—would gradually lose their grip on the public imagination.

These are wonderful visions of the future we can and must create for the people we serve.

Self-Determination Powerful visions require concrete actions. When Tom Nerney outlines the elements needed to achieve his preferred future, he points to the concept of “self-determination” as a key factor. Bob Williams, former commissioner of the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services, once said that “self-determination is a ten-dollar word for choice.” More broadly, self-determination refers to the right of individuals to have full power over their lives [UPenn definition].

One of the newest models to foster self-determination is called self-directed care, which shifts the power in treatment and recovery plans from providers and professionals directly to the individual with a mental illness or to the family of a child with emotional disturbance. The individual or family member controls some or all of the mental health service dollars needed to purchase the services and supports that will allow them to implement a person-centered plan for recovery. The individual is responsible for using public dollars wisely, for making decisions with freely chosen support when needed, and for becoming a contributing member of his or her community.

Research on self-directed care for people with developmental disabilities reveals that participants do as well or better than those who take part in traditional programming. They receive more services than those in traditional programs and are significantly more satisfied with these services. Self-directed care programs don’t cost more than traditional services.

To promote this important tool for self-determination, SAMHSA developed The Self-Direction Education Project. This effort includes training Web casts available on DVDs and fact sheets on mental health self-direction approaches. More information is available from SAMHSA’s National Mental Health Information Center online. The easiest way to find the Center is to go to the SAMHSA Web site at www.samhsa.gov and click on the link for the Center for Mental Health Services.

Another important tool for self-determination is the practice of shared decision-making. Shared decision-making is an interactive, collaborative process in which consumers and providers partner to make health care decisions. It combines the provider’s medical expertise with the consumer’s knowledge of what gives his or her life meaning and value.

Noted consumer researcher and advocate Patricia Deegan has said:

It seems to me that the shared decision process is more than a method. It is an ethical obligation that makes explicit the power of the professional and brings it into alignment with the voice and directives of the disabled person.

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 people with psychiatric disabilities are not competent to participate in treatment decisions or don’t wish to do so. This simply is not the case.

Further, we know that shared decision-making is entirely consistent with recovery, self-determination, and consumer-driven care and can help reduce barriers to treatment.

To promote the use of shared decision-making in mental health care, SAMHSA invited national experts to a meeting on shared decision-making July 10-11. We asked them to examine what shared decision-making is, how the process is being used in general health care, and how SAMHSA can promote its applicability to mental health care.

We will distribute a report on this meeting, and we plan to award a contract to develop and pilot test some innovative shared decision-making tools specific to mental health. These tools will help individuals with psychiatric disabilities participate in the type of reciprocal relationships—in this case with their health care providers—that are the hallmark of successful community integration.

Overcoming Barriers At this point, you may be thinking that the descriptions of the preferred future I outlined earlier seem overly idealistic, even given the powerful new tools at our disposal. However, we only have to think back to a time when African Americans ate at segregated lunch counters or women in the workplace made coffee, not major decisions affecting Fortune 500 companies. This wasn’t so very long ago. But just as African Americans and women surmounted barriers to assert their rightful place in the community, so, too, must people with psychiatric disabilities and those who advocate for them.

Stigma and Discrimination. Stigma and discrimination are powerful deterrents for people with psychiatric disabilities who want and deserve full community participation. 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 and hopelessness and deter the public from wanting to pay for care.

Worst of all, the fear of discrimination often causes individuals 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.

We know that stigma is a particular problem for our Nation’s youth. In fact, research tells us that only about one-quarter of young adults believe that a person with a mental illness can eventually recover.

SAMHSA’s National Anti-Stigma Campaign 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.

The Campaign was launched December 4, 2006, at the National Press Club in Washington, DC, and generated more than 100 media stories by national and local television, radio, and print media. The Campaign includes public service TV and radio ads and print materials, along with an interactive Web site [at www.whatadifference.samhsa.gov], where you can view the television spots and hear the radio ads. I encourage you to do so; these messages are very powerful.

The response to date has been heartening. Demand for materials is outstripping supply. In fact, we’ve reprinted half a million brochures for a massive, targeted college outreach in the fall, which is particularly important in the wake of the Virginia Tech shootings. Currently, we’re engaging State organizations to help with campaign outreach, and over the next year, the Campaign will expand by developing materials for members of ethnically diverse communities.

Seclusion and Restraint. Coercion in the provision of mental health care is another significant barrier to full community participation for people with psychiatric disabilities. 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.

Listen to what Bernice Loschen told the Council:

Forced treatment and abuse aren’t synonymous with healing. When persons are admitted in a general hospital for any other problems—stroke, cancer, broken hip, X rays, tests—these persons 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. Those patients are treated with compassion, caring, respect, and dignity, and persons who have serious enough emotional [or] mental problems need to be treated the same.

Indeed they do, Bernice. Seclusion and restraint aren’t treatment options, they are treatment failures. Individuals can’t be full participants in the lives of their communities when they are under external control—either physical or chemical.

SAMHSA has a number of activities designed to reduce and eliminate seclusion and restraint, including the award of 16 Seclusion and Restraint State Incentive Grants. Of particular interest to you in your role as State Olmstead coordinators is the Roadmap to Seclusion and Restraint Free Mental Health Services, a consumer-based staff training manual that includes best practices. It is available from SAMHSA’s National Mental Health Information Center. We also plan to release a video on alternatives to seclusion and restraint later this year.

Trauma. Finally, with the sixth anniversary of the September 11th terrorist attacks upon us, I would be remiss in not highlighting the role of trauma in making it that much more difficult for survivors of physical or sexual assault, natural or manmade disasters, or terrorism to recover from mental and substance use disorders. We know that people with psychiatric disabilities are particularly vulnerable in the wake of traumatic events, but we also know that being “of” the community, not just “in” the community, can help individuals recover more quickly.

The most effective disaster response emphasizes outreach, occurs in natural community settings, builds on people’s strengths, avoids mental health labels, and is culturally sensitive. Peer-run and peer-delivered services are particularly appropriate in this context because they offer the sort of reciprocal relationships that help individuals heal.

You can find a wealth of resources on the SAMHSA Web site for coping with traumatic events. Materials are available for first responders and health professionals, students, schools, adults, and families. Resources are also available from our Disaster Technical Assistance Center, which helps prepare States, Territories, and local entities to deliver an effective behavioral health response during disasters, and from the National Child Traumatic Stress Network, which is focused on children and adolescents who have been exposed to trauma.

What You Can Do to Help
As State Olmstead coordinators, you are in a powerful position to promote second order change in your States and communities, transforming them from ones in which people with psychiatric disabilities just live “in” in the community to ones in which all individuals—regardless of disability—participate in reciprocal relationships and live with dignity as part “of” the community.

As I noted earlier, your work is at once simple and complex. Old prejudices and fears die hard. Outmoded financing still holds sway, and outdated treatment practices, regretfully, are common. Still, I believe the following four steps can help propel you and your State toward a vision of a better future.

1. First, you must come to think of yourself as leaders. Full-scale transformation of the mental health system demands that each of us play a part. Every one of us should feel empowered to make our own contribution, no matter how small.

I know you are likely familiar with the oft-quoted comment attributed to U.S. anthropologist Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” The familiarity of her remarks makes them no less powerful or true. Individually and working together, you can effect the type of changes necessary for people with psychiatric disabilities to be fully integrated into their communities. More important, you must do so.

2. Second, you should take full advantage of the technical assistance offered to you as Olmstead coordinators. This conference is a wonderful example. But technical assistance need not be formal or delivered by professionals. Your peers may be the best source of lessons learned and helpful tips and techniques. This is what happened when Marie Williams of Tennessee provided training and consultation to replicate an effective program of permanent supported housing for people with mental illnesses in Kansas. Marie is at this conference to share her strategies for employment with you.

3. Third, don’t let attendance at this conference be the end-all and be-all of your connection to your colleagues in other States. Become an active member of the Olmstead learning community that has developed in the 7 years since this project’s inception. This group is a living example of what it means to be part of a reciprocal community in which each member is appreciated for his or her unique gifts and the whole is greater than the sum of its parts.

States came to this project with very different priorities and capabilities and in very different stages of development of their mental health systems. In light of that diversity, the funding component of this project gives States significant flexibility to determine the most effective use of project resources.

At the same time, the Olmstead decision and the final report of the President’s New Freedom Commission provide consistent, clear direction to this project and to the States regarding the goals of an effective public mental health system: community integration, consumer self-determination, and recovery. Working and learning together, you can model the type of stakeholder collaboration that is essential to mental health transformation and take advantage of the best this community has to offer.

4. Finally, and perhaps most important, learn what “help” really means. For too long in mental health service delivery, the balance of power has been unequal. Two years ago, when Pat Deegan addressed a rehabilitation conference in Norway, she noted that “power, including the power to oppress, often disguises itself as help. Power disguised as help,” she said, “is used to silence disabled people.”

It is not enough, Dr. Deegan noted, for professionals to ask consumers what they need. As professionals, we also must listen to what consumers have to say.

Conclusion
If we do everything we know needs to be done today to ensure full community integration for people with psychiatric disabilities—and if we dream the big dreams that will propel us toward the imagined future spelled out by the New Freedom Commission and by such visionaries as Tom Nerney and Liz Sayce—we can and will help the people we serve live with dignity as part of a community. Writing in 1999, Ms. Sayce imagines her dreams for the future coming true in 20 years. That’s still 12 years from now, and that’s too long to wait. We must act right now, today and tomorrow, to create the future that we know people with psychiatric disabilities need and deserve.

I’d like to close this afternoon with a very powerful sentiment expressed as a “prayer” that Dr. Deegan used to conclude her presentation in Norway. She said:

My prayer is that you will, for a moment, stop helping and draw close to those of us with disabilities. Stop helping and be still. Be still and know that I Am. Be still and know that in the silence our hearts beat as one. Be still and know that we are equal though we are not the same. Be still and know that to live as free men and free women is the heart’s deepest desire. And then, let us walk into that silence together.

Thank you. If we have time, I’d be happy to take your questions.