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
Olmstead at 10: Progress and Possibilities in the Year of Community Living
September 21, 2009
Washington, DC
Attached is the text prepared for delivery; however, some material may have been added or omitted at the time of delivery.
Thank you, Joyce, for your kind introduction and for the invitation to join you today to celebrate the historic anniversary of the Supreme Court’s decision in the case of Olmstead v. L.C. and E.W. This landmark decision upheld the rights of all individuals with disabilities—including those diagnosed with mental health conditions—to receive needed services in the most integrated setting consistent with their individual need. Writing for the majority, Justice Ruth Bader Ginsberg said, “Unjustified isolation…is properly regarded as discrimination based on disability.”
This year—the Year of Community Living—our country also celebrated another momentous occasion…the 40th anniversary of the moon landing. In 1962, seven years before Neil Armstrong set foot on the lunar surface, President John Kennedy ignited the country’s imagination in a passionate defense of his dream.
“Surely the opening vistas of space promise high costs and hardships, as well as high reward,” he said. “So it is not surprising that some would have us stay where we are a little longer to rest, to wait.”
But he continued, “We set sail on this new sea because there is new knowledge to be gained and new rights to be won and they must be won and used for the progress of all people…We choose to go to the moon in this decade not because [it is] easy, but because [it is] hard, because the goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one which we intend to win…”
In mental health, as in space exploration, much has changed in the past 40 years. Forty years ago, 1 out of every 3 hospital beds in America was a psychiatric bed; by 2002, that number had dropped to 1 in 7.
Forty years ago, we still thought of most mental illnesses as lifelong, debilitating conditions requiring long-term, custodial care.
And 40 years ago, the word “recovery” had not entered the lexicon in relation to mental health conditions.
Yet, we too, live in what President Kennedy called “an hour of change and challenge.” Ten years after the Supreme Court ruled that unnecessary segregation of individuals with disabilities violates the Americans with Disabilities Act, too many individuals remain unjustifiably isolated.
We, too, have a goal that is difficult but worth our best energies and skills. Individuals diagnosed with mental health conditions literally are dying for want of appropriate, community-based services and supports.
We, too, can’t afford to rest or wait for others to go first. Too often in mental health we react to crises rather than act to support innovative change. But as President Obama reminds us “Change will not come if we wait for some other person or some other time.” We are the ones we’ve been waiting for.”
And we, too, are sailing together because there are new rights to be won and progress to be made on behalf of every man, woman, and child in this country with or at risk for mental health conditions. This is a civil rights issue and a human rights issue.
Clearly, we haven’t a moment to lose.
We know that nearly every State in the country is facing budget gaps this year and next. Together, States are projecting 105 billion dollars in shortfalls for 2010. As many as 32 States are enacting mental health funding cuts. State Mental Health Authorities are responding to required budget cuts creatively and conscientiously, but sadly many have to lay off staff, cut services, and reduce the number of individuals being served.
You might wonder how we can choose this moment in time to push forward with the goal of full community integration for individuals with or at risk for mental health conditions. But how can we not when the need is so great? In times of economic uncertainty, individuals who are already vulnerable are at increased risk for adverse outcomes. And those who have never before experienced mental health problems may be subject to bouts of depression and thoughts of suicide. The individuals we serve are counting on us more than ever.
In his speech, President Kennedy surmised that if you could condense the whole of history into 50 years, most of the progress would have been made in the final 10. Likewise, think about how far we have come in the mental health field in the last 10 years. In addition to the Olmstead decision, we’ve seen dissemination of four seminal documents:
- Mental Health: A Report of the Surgeon General established unequivocally that mental health is fundamental to overall health…that mental disorders are real medical conditions… and that science-based treatments are effective.
- Achieving the Promise: Transforming Mental Health Care in America and the subsequent Federal Action Agenda specified the need for a consumer- and family-driven system of mental health care that is driven by the promise of recovery.
- Improving the Quality of Health Care for Mental and Substance-Use Conditions outlined the evidence base for quality mental health care and the need for services to be person-centered and coordinated across all systems of care. This Institute of Medicine (IOM) report explicitly acknowledged that health care must be delivered with an inherent understanding of the interactions between the mind and the rest of the body. This is a key tenet of a public health approach to health care.
- Finally, in 2009, the IOM released its much anticipated report, Preventing Mental, Emotional, and Behavioral Disorders among Young People. CMHS was pleased to support development of this report, which reveals concrete evidence that an increasing number of mental, emotional, and behavioral disorders are, in fact, preventable. Second, and equally important, this groundbreaking report recommends the inclusion of mental health promotion in the full spectrum of mental health interventions.
Our understanding about mental health and mental illnesses has grown with lightening speed in a short 10 years. But progress is as much about action as it is about knowledge.
At the recent national conference on the Mental Health Block Grant, noted researcher and consumer advocate Patricia Deegan challenged us with these words:
The measure of progress in a time of change is to ask, “How does this service, or this program, engage the individual as part of the solution?” The only programs we should fund are those which harness the resilience and self-righting potential of people diagnosed with mental illness[es]. The only programs we should fund are programs that give people the tools and resources they need to create a better life.
This morning I would like to share with you three ways that I believe you can help provide individuals with the tools and resources they need to create a better life:
- First, we must know where we are headed and we must always keep our goal in sight.
- Second, we must promote the evidence-based practices that will help us achieve our goal.
- And third, we must recognize when our goal has been reached.
Keeping Our Eyes on the Goal
President Kennedy was very clear in 1962 that we would land a man on the moon before the end of the decade and we never wavered from that singular goal.
In mental health, our goal for the individuals we serve has been variously described as self-determination, community integration, or community living. Today, in this Year of Community Living, I want to go one step beyond where we have been…and one step toward where we need to be…to talk about social inclusion.
This past July, on the 19th anniversary of the Americans with Disabilities Act, President Obama announced that the United States would sign the United Nations Convention on the Rights of Persons with Disabilities. The Convention pledges “full and effective participation and inclusion in society” for all individuals with disabilities, including mental health conditions.
“Social inclusion,” notes England’s Institute for Mental Health. “is not just about having access to mainstream services—it is about participation in the community, as employees, students, volunteers, teachers, care[takers], parents, advisors, residents, [and] active citizens… It is about prevention and mental health promotion: about maintaining support, building resilience, and community wellbeing.”
Perhaps this is what President Lyndon Johnson envisioned when he said:
The American city should be a collection of communities where every member has a right to belong. It should be a place where every man feels safe on his streets and in the house of his friends. It should be a place where each individual's dignity and self-respect is strengthened by the respect and affection of his neighbors. It should be a place where each of us can find the satisfaction and warmth which comes from being a member of the community of man.
Unfortunately, all too often, individuals with mental illnesses are physically in the community, but not of the community, in the sense of psychologically or socially belonging. They are living in what Pat Deegan calls a life of “handicaptivity,” sentenced to being socially excluded for the crime of having a disability.
Social inclusion—being in the community—means having valued activity, adequate income, recognition and respect from others, and a political voice. It means having appropriate housing, access to health and mental health care, reliable transportation, and opportunities for recreation.
Most important of all, social inclusion means the ability to participate and thrive in personal relationships. In fact, in his article “Redefining Community,” author John McKnight defines community services as those that involve individuals in community relationships.
He writes, “We are recognizing that every life in community is, by definition, one that is interdependent—filled with trusting relationships and empowered by the collective wisdom of citizens in discourse.”
Promoting Practices That Work
How do we empower individuals who use mental health services to be fully involved in community relationships? The answer is simple: we must promote those practices that work!
We know that peer support provides the sense of hope without which recovery is not possible. Peers build relationships with individuals diagnosed with mental health conditions and welcome them into communities. They reach out to those who are living on the streets and provide a bridge to those returning from jails or hospitals. Peer-run programs are an evidence-based practice and are highlighted in a forthcoming SAMHSA evidence-based toolkit. In addition, peer support is now covered by Medicaid as a rehabilitation service.
Peers also support one another to share decisions about their health and wellbeing with their providers and participate in self-directed care programs. Self-directed care programs that allow individuals to control the resources they need for recovery have proven effective with older adults and individuals with developmental disabilities. They are also showing positive outcomes for mental health consumers.
Individuals who participate in directing their own care may choose traditional treatment, but they also have control of the resources they need to purchase other services and supports that are meaningful to them. This could be anything from buying dentures to increase their self-confidence or purchasing a car to get to work. As of 2009, more than one-third of Medicaid Home and Community-Based Services waiver programs offered individuals the opportunity to self-direct their services, including hiring staff and making key budget decisions. In challenging economic times, self-directed care programs are a cost-efficient use of public funds.
Likewise, supportive housing saves both lives and public resources. As the Bazelon Center points out, “the cost of serving a person in supportive housing is half the cost of a shelter, a quarter the cost of being in prison, and a tenth the cost of a state psychiatric hospital bed.” Supportive housing—unlike board and care homes or nursing homes that are in the community—allow individuals diagnosed with mental health conditions to be of the community. The principles and practices of supportive housing are highlighted in a forthcoming SAMHSA evidence-based toolkit.
Employment is also an important part of community living. As Pat Deegan notes, “Having a job helps us establish an identity as a worker, a taxpayer, and a citizen.” However, despite their desire and ability to work, individuals with psychiatric disabilities have the highest unemployment rate of any disability group in the country.
The evidence-based practice of supported employments helps individuals diagnosed with mental health conditions choose, get, and keep competitive jobs. In recognition of the importance of employment to recovery, SAMHSA is preparing to launch a public education campaign to help employers understand the importance of hiring mental health consumers and how best to support them. We also hosted a dialogue on employment between consumers, employers, and other stakeholders and will issue a summary report with key recommendations.
Peer support, self-directed care, supportive housing, and employment are but a few of the evidence-based practices that we know work to support individuals outside of institutions. They are cost-effective ways of promoting mental health and preventing the onset or worsening of mental illness symptoms. During these difficult economic times, we have no choice but to stop poring scarce resources into expensive, institutional care. We must, instead, redirect those resources to pay for services and supports that promote full social inclusion for the individuals we serve. Services that support individuals in community relationships have become a legal, moral, and fiscal imperative.
Seeing Into the Future
But how will we know we have succeeded in meeting our goal of social inclusion for individuals of all ages with or at risk for mental health conditions? To do so, we must understand what success will look like.
In a chapter aptly titled “A Vision of What Can Be,” Thomas Nerney of the Center for Self-Determination offers a scenario of this preferred future. He writes:
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…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.
The desire for membership and belonging is part of the human condition. Each of us wants someone to love, something valuable to do, and a place to call home. And those of you gathered here today have the privilege of being in the forefront of efforts to support individuals diagnosed with mental health conditions in their efforts to share in the American dream.
Federal Efforts
Finally this morning, I want to share with you some reasons why I’m excited about the future we’re building. We can take heart in the significant amount of stimulus money that is designated for health care. These funds include $87 billion targeted to help States with Medicaid and continuation of health insurance for people who have lost their jobs. In addition, health care reform remains high on the Administration’s agenda and we remain confident that mental health will be included in overall health care reform.
We must not rest comfortably and let others lead the way, however. Mental health must be front and center in any and all discussions of health care reform at the Federal and State levels; your active involvement at the State level can be a significant force for transformative change.
You also are experienced at leveraging your Olmstead dollars to further the cause of community integration. You are using your Olmstead stipends to attract other Federal and State resources and private funds to provide supportive employment…to translate the Illness Management and Recovery curriculum for use by Somalia, Vietnamese, and Hmong consumers…to develop more than 7,000 units of housing…and to create a jail diversion program. This is transformation made real!
At the Federal level, we are supporting the Year of Community Living with a number of new initiatives, as announced in June by Health and Human Services Secretary Kathleen Sebelius.
First, we are creating new partnerships. At the State level, you are stepping outside traditional, bureaucratic silos and working with all of the sectors that serve individuals diagnosed with mental health conditions. So, too, are we coordinating our efforts at the Federal level on behalf of Olmstead implementation.
Secretary Sebelius has asked the Administration on Aging, the Centers for Medicare and Medicaid Services (CMS), the Office for Civil Rights, the Office of the Assistant Secretary for Planning and Evaluation, and SAMHSA to form an HHS Coordinating Council, which will be led by the Office on Disability. These agencies will work together to put in place solutions that address barriers to community living for individuals with disabilities and give people more control over their lives and the supports they need.
As a first step, CMS will engage the public in making meaningful regulatory reforms to the Home and Community-Based Waiver program. Earlier this year, CMS invited public input on proposed changes to current regulations that will give States greater flexibility to serve people based on their individual needs rather than on diagnosis.
In addition, CMS and the Administration on Aging are making grant funds available to States to strengthen and expand the Aging and Disability Resource Center Programs (ADRCs). ADRCs will be required to partner with all State agencies involved in serving populations with disabilities, as well as with Centers for Independent Living. The ADRCs are a “one stop shop” to long-term care resources for individuals of all ages, incomes, and disabilities.
The department’s Community Living Initiative will include partnerships with other Federal agencies, as well. The Department of Housing and Urban Development (HUD) is making 1,000 housing vouchers available for individuals with disabilities transitioning from institutions to the community, targeting States operating Money Follows the Person Demonstration programs. HUD will also award an additional 3,000 housing vouchers to serve non-elderly people with disabilities, and they will encourage Public Housing Authorities to form working relationships with State Medicaid agencies interested in addressing community living needs of beneficiaries.
The HHS Office for Civil Rights is enhancing its partnership with the Department of Justice’s Civil Rights Division to ensure vigorous enforcement of the Americans with Disabilities Act and the Olmstead decision. Thus far, the Office of Civil Rights has investigated more than 500 complaints alleging Olmstead violations and obtained corrective action in more than 60 percent of cases. This partnership with DOJ will maximize the effectiveness of Federal leadership in promoting the civil right of community living and setting forth the Administration’s position in Federal courts.
In keeping with the President’s commitment to open government, we also will reach out to the public as partners in our Community Living Initiative. Throughout this year, HHS will hold listening sessions giving stakeholders an opportunity to come together for a common purpose: overcoming barriers to community living for individuals with disabilities and older Americans. These forums will help us craft the agenda to improve Federal programs and better support the efforts of State and local governments.
Wrap-up and Conclusion
In closing this morning, I want to return to a point I made earlier about being able to judge the success of our efforts. When Thomas Nerney said, “We will build an inclusive community where all people are invited, welcomed, and expected to become one of us,” he gave us a wonderful vision of what the future will look like when individuals with disabilities of all types have achieved full social inclusion.
But I want to leave you with another equally important vision… that of what it will look like when those of you who are working on implementation of the Olmstead decision can lay down your arms, so to speak, and finally rest.
It comes from Meg Wheatley, author of Leadership and the New Science and founder of the Berkana Institute, a research foundation working on the design of new organizations.
Since 1992, the Berkana Institute has been experimenting with what it calls the lifecycle of “emergence.” This is a term that describes how living systems begin as networks…shift to intentional communities of practice…and evolve into powerful systems capable of widespread influence. Emergence is “how life creates radical change and takes things to scale.”
I believe that as Olmstead coordinators, you have moved over the last 10 years from simple networks of individuals with a common cause to intentional communities of practice. Together, you share a passion for what you do and you learn how to do it better as you interact regularly. Be certain to take full advantage of the opportunity to network together over the next several days.
But I also believe we are well on our way to reaching the final stage in emergence, which is the appearance of a system that has real power and influence. When this happens, Meg Wheatley says:
“Pioneering efforts that hovered at the periphery suddenly become the norm.
“The practices developed by courageous communities become the accepted standard.
“People no longer hesitate about adopting these approaches and methods, and they learn them easily.
“Policy and funding debates now include the perspectives and experiences of these pioneers…
“And critics who said it could never be done suddenly become chief supporters (often saying they knew it all along).”
Clearly, though we have made significant progress over the past 10 years, much remains to be done. But individually and together, your hard work and dedication are changing the conversation.
Americans increasingly understand that mental health is essential for overall health and that segregating individuals diagnosed with mental health conditions is wrong legally, morally, and ethically.
In communities around the country, peers are helping peers recover and individuals diagnosed with mental health conditions are directing their own treatment. They are working in competitive jobs and living in community housing. More important, they are growing and flourishing in relationship with others.
And when we have met our goal and individuals with disabilities live alongside us as full and equal members of the community, those who questioned whether or not it could be done will say that they knew it all along. This truly is transformation made real!
Thank you.
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