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 Washington to New Jersey: A Life in the Community for Everyone
April 23, 2008
Iselin, NJ
PowerPoint Version (2.2 MB)
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, Debra (Debra Wentz, CEO of the New Jersey Association of Mental Health Agencies), for your kind introduction and your invitation to join you today. Your theme, "Exploring the World of Mental Health," resonates with me.
Nobel-prize winning poet T.S. Eliot said, "We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time."
When I addressed this group 4 years ago, we had just begun to explore what it meant to transform our mental health system around a vision of recovery.
Generally, it is not in my nature to look back. In more than 30 years in the mental health field, from being a rape crisis counselor to becoming Director of the Center for Mental Health Services, I have always looked forward to a time when I believed with all my heart that individuals with mental health problems would be able to live, work, learn and participate fully in their community.
However, sometimes I'm moving so quickly I fail to realize where we have been, even a few short years ago. In fact, when I took a few minutes to review what I shared with you in the fall of 2004, I was struck by how far we have come in Washington, and how far you have come in New Jersey. It's as if I'm seeing the mental health system in your State and in our Nation for the first time.
Defining Recovery
[Slide 2: Consensus definition of recovery]
Four years ago, I told you, "We need a uniform, operational definition of recovery—a common language that makes it possible for all the parties involved to communicate effectively, to know each others' expectations, and to explore the full range of possibilities. We must be able to define recovery so that we can measure it and put it into practice."
I'm pleased to say that in 2006, we did just that.
We gathered more than 110 expert panelists representing mental health consumers, families, providers, advocates, researchers, managed care organizations, State and local public officials, and others. Together, we examined 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.
In particular, a focus on recovery demands that the mental health system be consumer-driven. Not just consumer-centered, but consumer-driven. 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."
We want consumers to transcend the circle of external control so they can take full advantage of everything that makes life real and meaningful to them.
Four years ago, I noted that transformation as envisioned by the New Freedom Commission on Mental Health would require a profound shift in our policies, in allocation of dollars, and in programs and services to support consumers' ability to make choices about the services they receive.
At SAMHSA, we are making this shift because we believe that self-determination is the right of every individual with a mental health problem in this country. Broadly defined, self-determination refers to the right of individuals to have full power over their lives.
[Slide 3: Self-directed care]
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.
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.
[Slide 4: Shared decision-making]
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.
Shared decision-making is not a new concept in general 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 psychiatric disabilities are not competent to participate in treatment decisions or don't wish to do so. This simply is not the case.
In fact, 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 help promote broader acceptance of shared decision-making in mental health, we recently awarded a contract for the development and testing of shared decision-making tools that will help individuals participate fully in their own treatment and recovery. This is transformation in action!
In New Jersey, you are making this important shift as well. As part of the system enhancements you are implementing under your Wellness and Recovery Transformation Action Plan, you are increasing and enhancing Consumer-operated Self-Help Centers around the State and supporting a workforce development training project for consumer leaders. You are implementing psychiatric advance directives statewide and training providers to help consumers use this invaluable tool for self-determination. And you expect to award a contract next month for a statewide consumer-operated, peer support warm line. Offering consumers in need a friendly ear may prevent a full-blown crisis that would lead to unnecessary hospitalization or even self-harm. This is transformation in action!
Focusing on Wellness
[Slide 5: Mental health continuum]
Transforming the mental health system around the concept and practice of recovery also demands a focus on wellness. 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.
[Slide 6: Global burden of disease]
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.
New Jersey has made this commitment as well. Under the able leadership of Peggy Swarbick, the Collaborative Support Programs of New Jersey held its wellness conference last month. The group challenged themselves and the New Jersey mental health system to address the health disparities facing individuals living with a mental illness.
Peggy noted, "The lack of physical wellness is a serious barrier to participation in recovery and community integration and leads to a diminished quality of life, unnecessary suffering, and even premature death."
The reasons for joining this important campaign are clear, and the time to do so is now.
[Slide 7: Transformation slide]
Transforming through Collaboration
Wellness and recovery are the foundation for mental health transformation. Four years ago, I told you that transformation of America's mental health system will not be easy, nor will it happen overnight. Transformation happens when public and private agencies, providers, researchers, policymakers, consumers and their families all unite behind a belief in recovery and work together to explore the full range of possibilities. This is how we will eliminate the fragmentation of services that plagues our current system. This is what we hope will become a model for you in your communities.
That's what I said 4 years ago, and today I can honestly say that I hope what you have done in New Jersey will become a model for other States and communities around the country.
Though you have been doing the challenging work of promoting recovery and transformation for many years, your "formal" transformation process and efforts began with the Governor's Task Force on Mental Health Final Report published in March 2005. Recommendation #1 was to promote a system based on Wellness and Recovery.
To do so, you undertook a widespread and fast paced 6-month process to engage the entire system and all of its stakeholders. More than 120 stakeholders, including consumers, families, service providers, housing providers, and State and local government employees participated on nine subcommittees to review the system from their unique perspectives and develop "do-able" recommendations.
A total of 184 recommendations were put forth, refined and categorized into three areas: Systems Enhancements, Data- Driven Decision Making and Workforce Development.
From this stakeholder input process, the New Jersey Wellness and Recovery Transformation Action Plan was developed and published in October 2007.
Bravo! I'm certain you've heard it said that collaboration can be defined as "an unnatural act performed by non-consenting adults." This is difficult work but you accomplished it quickly and thoroughly and, by beginning to implement some of the steps you proposed, you've put the action in your Action Plan. I think one of the keys to your success was the fact that this was both a top-down, bottom-up process, with support from both the Governor's office and the individuals you serve. This truly is transformation in action!
At the Federal level, we, too, are continuing our collaborative efforts to transform the delivery of mental health care in this country. Four years ago, we were just getting ready to release our first Federal Action Agenda, the product of an unprecedented collaborative effort among Federal agencies and offices whose work touches the lives of individuals with mental health problems. Much like your plan, we outlined a set of actionable items designed to make transformation something we do, not just something we talk about.
Four years later, we're getting ready to publish our second year update, highlighting the many activities we've completed and those that are ongoing. I want to touch briefly on two of these accomplishments—awarding of the Mental Health Transformation State Incentive Grants and our Campaign for Mental Health Recovery.
[Slide 8: TSIG States]
It hardly seems possible that a mere 4 years ago we had just received approval for the Transformation State Incentive Grant or T-SIG program. Today, nine T-SIG States have become living laboratories for the type of system-level changes that will lead to changes in the way services are delivered, and, ultimately, we believe, to positive changes in client outcomes. We've seen some important developments in these States. For example:
- Oklahoma has created a collaborative among researchers, State agencies, and consumers to form partnerships between science and service, including a grant process for research. The partnership has already resulted in five grant awards being made.
- New Mexico has implemented curricula to train bilingual interpreters to work with behavioral health specialists and consumers.
- Maryland has formed Consumer Quality Teams to strengthen self-advocacy and critical thinking in consumers and enhance the quality of mental health services by resolving individual consumer concerns at the local provider level.
- And Connecticut has proposed legislation to regulate use of restraints and seclusion on special education students in public schools.
This is transformation in action!
[Slide 9: Campaign for Mental Health Recovery]
Making the T-SIG awards and supporting these States' transformation efforts was one of the key action steps in our first-year Federal Action Agenda. So, too, as I noted to you 4 years ago, was creating a plan for a national education campaign to reduce discrimination against individuals with mental health problems.
Unfortunately, we know that discrimination, fear, prejudice, isolation, and bias are powerful deterrents to individuals who need help for mental health problems. 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.
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.
We know, too, that it is never too early to start raising awareness of mental and emotional problems. Research reveals that half of all diagnosable lifetime cases of mental illness begin by age 14, and three-fourths of all lifetime cases start by age 24. Sadly, suicide is the third leading cause of death for youth ages 15 to 24.
I hope you will join me, and our National Ambassador Howie Mandel, in celebrating National Children's Mental Health Awareness Day on Thursday, May 8. Awareness Day is a day for SAMHSA and the initiatives and communities it supports to promote positive youth development, resilience, recovery, and the transformation of mental health service delivery for children and youth with serious mental health needs and their families.
[Slide 10: Voice Awards]
To recognize those leaders in the media and our communities who have made a concerted effort to reduce discrimination and promote understanding for individuals with mental health problems, SAMHSA instituted The Voice Awards; this year's ceremony honoring 26 films, shows, and individuals will be held in May.
I'm so pleased to see that New Jersey has instituted its own awards program. The New Jersey Governor's Council on Mental Health Stigma will make its first Ambassador Awards in May, honoring individuals and organizations from outside the field of mental health who have gone above and beyond to promote respect and support for those living with mental health problems.
The Council's motto, "Respect, Understanding, and Change" speaks volumes about your commitment to combat discrimination and bias against individuals in your State who are vulnerable to fear and mistrust simply because they are sick. There is no place in a transformed system for such attitudes and beliefs, and I congratulate your efforts in this critical area.
There is also no place in a transformed system for the harmful practices of seclusion and restraint. 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 individuals 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. 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 through a number of activities, including the award of 16 Seclusion and Restraint State Incentive Grants. New Jersey is one of our grantees, and I want to commend you for your use of peer advocates in State hospitals to help promote healthy relationships and problem-solving that will lead to violence and coercion-free communities.
At the Federal level, 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.
Measuring Outcomes
Finally, this morning, I want to talk briefly about what it means to sustain the progress that you have made in New Jersey and that we are seeing in other States and communities around the country.
Transformation is a process, a deep, vast, and ongoing process along a continuum of innovation. True innovation—what author and innovation expert John Kao [Kay-oh] calls "disruptive, game-changing innovation"—demands continuous adaptation to evolving circumstances. It was John F. Kennedy who said, "The New Frontier is not a set of promises. It is a set of challenges." We must rise to the challenge, not once and for all, but each and every day.
Clearly, this is easier said than done, particularly in a landscape of increasing need and diminishing resources. I know that many of you are concerned about pending regulatory changes within Medicaid and what impact that will have on your ability to fund and deliver services to individuals with mental health problems. The Centers for Medicare and Medicaid Services is a partner with SAMHSA in our efforts to transform mental health care in this country, and I think it would be a mischaracterization to think that CMS does not support recovery.
It's true that States may have some difficult decisions to make concerning their Medicaid budgets in the coming years. And the proposed regulatory changes may burden providers with more complex record keeping. At the same time, I see many positive developments for mental health contained in the Deficit Reduction Act (DRA). For example, the new Home and Community-based Services Option is tailor made for mental health. It is no longer necessary to request a waiver or show budget neutrality.
Further, the DRA includes a new $200 million grant program to institute and evaluate programs designed to keep children with mental health needs out of residential treatment.
Finally, the proposed changes to the Rehabilitative Services Option require active consumer participation in service planning, which is a key goal of a transformed system of care. If we can sense opportunity where others see only pitfalls, I think we will be able to use all the tools we have—including Medicaid—to advance our goals.
Closer to home, I know that New Jersey—like many States—is facing budget shortfalls. I also know that you have continued to receive increased funds for your transformation initiatives. It is obvious that Governor Corzine is committed to steer the State to fiscal responsibility, but not at the expense of your most vulnerable citizens.
It is equally clear to me that you continue to have high-level support because the work you do not only involves changing systems, but also hearts and minds. That takes resources, but in the end, when individuals with mental health problems aren't living in State hospitals, in jails or prisons, or on streets, it will also save resources. More important, your work will save lives and you can't put a price on that.
You can, however, begin to measure the changes you are making, and you should do so both to help justify future expenditures and to make quality improvements. Here in New Jersey, I am heartened to see that one of the three key areas of your Transformation Action Plan is Data-Driven Decision Making.
The input obtained from hundreds of consumers through the stakeholder input process yielded many outcomes desired by consumers. These are being refined and will be shared with the mental health community by this summer. System-wide outcomes are being established and further stakeholder input will be sought to identify, define, and establish measures and benchmarks.
As the consumer and system recovery outcomes are finalized, these will be integrated into the contracting and procurement processes, allowing you to define and pay for only those services that support an individual's recovery. This is transformation in action!
We are undertaking a similar process as part of our evaluation of the T-SIG States. We want to understand whether the changes we make in our service systems lead to improvements in the lives of adults and children with mental health problems and their families. To do so, we have begun to measure the process of infrastructure change and recovery as consumers define it.
[Slide 11: Infrastructure indicators]
In order to realize our evaluation goals, we had to develop a way to measure system change, which has never been done in a systematic way before. The T-SIG States are, in essence, the guinea pigs for a new set of infrastructure indicators. These 7 measures address those areas that we believe indicate the type of system-level changes needed to transform the delivery of mental health services to adults and to children and their families.
The 7 indicators are tied to the New Freedom Commission's 6 goals and must reflect the Comprehensive Mental Health Plan the State develops. States set targets they plan to meet, such as training 100 employment specialists in the supported employment model, and report on their progress in doing so.
We have our first set of data available. They reveal that, in the first 2 years, the first group of 7 States have:
- Made more than 45 significant and positive policy changes, including 7 in the financing arena;
- Trained more than 6,500 providers;
- Made 13 significant and positive organizational changes;
- Expanded data accountability systems across 13 organizations; and
- Implemented evidence-based mental health practices.
Of planned infrastructure changes:
- 25% will be on consumer-driven care.
- 25% will be on evidence-based practices.
- Almost 20% will be on prevention practices.
- And 30% will be on primary health, disparities, and technology.
In addition to measuring infrastructure change, we have embarked on a groundbreaking effort to measure recovery and resilience as consumers and families define them. To be certain our efforts are truly consumer-driven, we hired five consumer and family member consultants to help develop the evaluation plan and assist with collecting and interpreting the data.
To measure recovery and resilience, each State will measure the experiences of consumers and families in programs or services that have been or are anticipated to be impacted by the T-SIG grant. They will compare this information to the experiences of consumers and families in programs or services that are not anticipated to be impacted by the T-SIG grant. States can choose their own measures of recovery and resilience as long as they are validated and are consistent with SAMHSA's National Consensus Statement on Mental Health Recovery, which I shared with you earlier.
To measure the recovery process, which is unique from one individual to another, and to be able to tie it to the types of system-level changes States adopt, is truly revolutionary.
[Slide 12: Closing slide]
Wrap-up and Conclusion
In closing this morning, I'm going to borrow and adapt a wonderful sentiment that I came across on the official Federal Earth Day Web site. Earth Day was yesterday, and it was a time to both "celebrate" and "accelerate," as the Web site noted. I love the sense of both taking stock of what we have accomplished without losing sight of how much more remains to be done.
With credit to the creators of this Web site, I want to leave you with these important words:
Today is a time to celebrate gains we have made and create new visions to accelerate progress toward mental health system transformation, wellness, and recovery.
Today is a time to unite around new actions.
Today and every day is a time to act to protect the health and well-being of adults and children in this country with mental health problems.
We haven't a moment to lose.
Thank you. If we have time, I'd be happy to take your questions.
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