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Mental Health ProgramsAbout CMHSNational Advisory Council Subcommittee on Consumer/Survivor IssuesROCKVILLE, MARYLAND WELCOME AND INTRODUCTIONS Larry Fricks, Chair, Subcommittee on Consumer/Survivor Issues, Substance Abuse and Mental Health Services Administration (SAMHSA)/Center for Mental Health Services (CMHS) National Advisory Council, called the meeting to order on August 15, 2005, at 9:30 a.m. Other Subcommittee members present included Ellen Awai, Randall Bosin, J. Rock Johnson, J.D., Maria Maceira-Lessley (by telephone), Frances Priester, J.D., Carlette Randall, M.S.W., Patrick Risser, and Paula Stockdale. Consumer Affairs Specialist Chris Marshall welcomed new Subcommittee members Frances Priester, director, Office of Consumer and Family Affairs, Department of Mental Health, Washington, D.C.; Ellen Awai, volunteer coordinator, NAMI Hawaii, and board member, Hawaii Disability Rights Center; and Randall Bosin, mental health advocate. Members reported on their recent activities and interests. Mr. Risser, upon relocation to Ohio, will continue his work as advocate/activist. He recently received the Clifford Beers Award from the National Mental Health Association. Ms. Johnson urged that CMHS preserve the materials that Mr. Risser has accumulated as part of the history of the mental health consumer movement. Ms. Johnson, who serves on Nebraska’s legislative behavioral health oversight committee, noted progress in the area of seclusion and restraint. She expects Nebraska’s upcoming summit on peer-operated services to produce a significant ripple effect. Ms. Priester is working to create a mental health court in Chicago. She noted that the District of Columbia has applied for a transformation grant. Mr. Fricks announced that Georgia conducted the first peer-to-peer training on trauma. The plan is to create a pool of specialized trainers who will bill Medicaid for their services. Georgia is starting a new training program for peers to work with people in recovery from mental illnesses who are homeless. Georgia’s general assembly is expected to approve advance directives. Ms. Awai reported that the federal government has mandated Hawaii to change its mental health system, and consumers have been proactive in their work. Ms. Stockdale announced that she is seeking volunteer (or other) work. She reported that TENN-Care in Tennessee will provide care for everyone who needs care. In January Medicare will pay for medications, which will take the burden off TENN-Care. Mr. Bosin described his focus on employment issues, particularly Social Security and Ticket-to-Work. He explained the difficulty in living in an affluent area on a fixed income. His advocacy has led to creation of a Ticket-to-Work advisory panel, and he continues to work to create an advisory group of beneficiaries. He also serves on the Montgomery County ( Maryland) mental health advisory council. OLD BUSINESS: STATUS OF RECOMMENDATIONS Mr. Marshall reported that the National Advisory Council adopted the Subcommittee’s three recommendations of February 14-15, 2005. A contract will begin in fall 2005 for development of the Consumer-Operated Evidence-Based Practice Toolkit, and the CMHS Office of Consumer Affairs will work with the project officer on a plan to ensure meaningful consumer involvement in the process. CMHS’s Transformation Action Initiative workgroup, along with a contractor, is operationalizing meaningful participation of consumers in the initiative’s planning, implementation, and evaluation. In addition, CMHS recently hosted a technical assistance providers meeting where issues of consumer values and consumer-driven approaches were raised consistently as a priority. Planning is underway to infuse trauma-informed concepts and practices into existing CMHS programs through the Women, Violence, and Trauma Center; the Trauma Champions Institute was held in June 2005; and a training toolkit on trauma-informed systems of care will be available early in 2006. Mr. Marshall explained that all Subcommittee recommendations have been adopted by the National Advisory Council; upon adoption, the consumer affairs staff works to operationalize them. CMHS DIRECTOR’S REPORT Ted Searle, M.B.A., Deputy Director, CMHS, presented his report on behalf of CMHS Director Kathryn Power. He described several recent events that represent progress in transforming the mental health system. In July 2005 SAMHSA Administrator Charles Curie and Ms. Power presented the Federal Action Agenda to Congress, a presentation that received spontaneous applause. The twenty members of an interdepartmental Federal Partners Workgroup have agreed to take 70 specific first steps that will produce immediate improvements in mental health care. A new Federal Executive Steering Committee, composed of senior-level members of each partner department and agency, will include the heads of SAMHSA, National Institute of Mental Health, and the Centers for Medicare and Medicaid Services. Mr. Searle also stated that the Campaign for Mental Health Reform, a coalition of 16 national mental health advocacy organizations, released a report that proposes action steps for Congress and the Administration to reform the mental health system. Members of Congress stepped forward with a nonpartisan call for action. Mr. Searle noted that the greatest opportunity to make a real difference for mental health care for millions of Americans resides in states. CMHS is striving to help states, including incorporating National Outcome Measures (NOMs), which focus on positive outcomes for consumers, into state mental health reporting requirements, and now is considering how to build NOMs into all CMHS discretionary programs. States are being asked to use NOMs to identify gaps between service needs and service delivery, to set outcome goals, and to identify priorities for action based on recovery. In April 2005 in congressional testimony, Mr. Curie released state NOMs data gathered to date. Full implementation, expected by 2007, will permit Congress and consumers to judge the effectiveness of SAMHSA-funded programs. The Mental Health Transformation State Incentive Grant (Mental Health SIG) program provides seed money to help states develop systems infrastructure needed to meet the comprehensive needs of consumers and families. Of 33 applications by states and tribal governments in the first round, six or seven grants will be awarded for a total of $19 million. Another $6 million for a second round of grants is included in the President’s proposed FY2006 budget. CMHS wants all states to transform their systems, and many states are engaged. With the National Governors Association, CMHS is conducting regional meetings to bring together influential state teams to create state visions for transformation and to reach consensus on priorities and strategies. The Transformation Action Initiative is a new effort to organize and coordinate technical assistance work on transformation, both internally and externally. One option is technical assistance brokers, who could tailor a technical assistance plan to respond to a state’s priorities for transformation. CMHS spends $44 million annually on 50 technical assistance efforts aimed to eliminate stigma, expanding consumer-operated services, and eliminating barriers to treatment. Mr. Searle described several programs to end stigma, including the Elimination of Barriers Initiative, which produced public services announcements heard by 222 million people in eight pilot states. SAMHSA hosted the inaugural Voice Awards in July 2005, which recognized film, TV, and radio writers and producers who have created positive, accurate, and dignified portrayals of people with mental health problems. CMHS has inaugurated a three-year National Anti-Stigma Campaign about mental health problems and recovery, and to encourage people who need help to seek it. The first round of research and outreach strategy has been completed, and the campaign has held an expert symposium on stigma and discrimination, an agency kickoff meeting, and an initial meeting of a campaign workgroup of public and private partners. The ADS Center continues its series of training teleconferences; its website averages 120,000 hits per month. A dialogue meeting will be held in October on issues of college-age students with mental health problems. CMHS has held a series of consumer-informed training webcasts on self-direction, viewable on the SAMHSA website. SAMHSA issued a report of the 2004 Consumer Direction Initiative Summit, “Free To Choose: Transforming Behavioral Health Care to Self-Direction.” In FY2005 CMHS has sponsored attendance of 250 consumers at 16 national and international meetings, conducted two regional consumer meetings, and will sponsor in December a meeting on person- and family-centered planning. CMHS has developed a peer support resource kit, “Building a Foundation for Recovery,” to be released soon. Mr. Searle summarized the status of the SAMHSA/CMHS budget. Congress is considering the President’s budget request for SAMHSA of $3.3 billion. The budget focuses on SAMHSA’s “redwoods,” or major programs. The proposed budget for the Access to Recovery substance abuse treatment voucher program is $150 million, an increase of $50.8 million; Mental Health State Incentive Grants for Transformation, $26 million, a $6 million increase; Strategic Prevention Framework State Incentive Grants, $93.5 million, an increase of $7.9 million; and continuation of the emphasis on co-occurring disorders. The requested budget for CMHS is $837.3 million, with $210.2 million requested for Programs of Regional and National Significance (PRNS); $105.1 million, Children’s Mental Health Services; Protection and Advocacy, $34.4 million; PATH Homelessness Formula Grant, $54.8 million; and Mental Health Block Grant, $432.8 million. The House of Representatives and Senate have issued “marks,” both with increases for PRNS that will be resolved in conference committee. Discussion. Mr. Risser urged a review of practices for which the evidence is not good (for example, mental health courts and polypharmacy) and that, therefore, ought to be discontinued; questioned the appropriateness of NIMH’s Real Men/Real Depression campaign slogan; urged attention to outcomes that are meaningful to consumers rather than systems; suggested reviewing shelved studies to find positive findings that have not been disseminated; suggested increased attention to promoting mental health; expressed concern about consumer leaders who did not receive scholarships to the Alternatives Conference, noting that new and old leaders must attend for continuity; and urged CMHS to include consumer input in scheduling conferences. Mr. Marshall responded to Mr. Risser’s concerns, stating that he was not aware of any defined body of research indicates that polypharmacy and mental health courts are clearly ineffective; nevertheless, if evidence points in that direction, it will be considered. Mr. Marshall noted that CMHS also is opening up the National Registry of Evidence-based Programs and Practices (NREPP) to mental health programs, and promising practices and consumer-developed programs will have an opportunity to be assessed for inclusion. NIMH’s Real Men/Real Depression message is designed to “normalize” depression and thus to fight stigma; CMHS is working with NIMH to share information. Mr. Marshall observed that NOMs include recovery-type satisfaction elements, including client satisfaction and social connectedness, and that the measures are expanding; he stated that he will look for the old studies. CMHS Senior Consumer Affairs Specialist Carole Schauer clarified that webcasts on self-direction are available for viewing and PowerPoints are downloadable. Ms. Stockdale urged CMHS to pay increased fiscal attention to consumer-operated services that are overseen by providers to ensure that funds are not shifted to other priorities and that the funds support only consumer-run programs. Mr. Marshall noted that states have considerable discretion in using block grants. In the context of the toolkit on consumer-operated services, Mr. Fricks urged development of incubators that provide business-related and other start-up services for new consumer-operated businesses. Ms. Johnson expressed concern that the consumer perspective be retained in behavioral health services offered in Nebraska by faith-based organizations. She suggested consideration of a mechanism whereby consumers, in addition to governors, sign off on applications for Mental Health SIGs. Mr. Marshall responded that consumer input may be accomplished by established participation throughout the application development process. Mr. Bosin concurred with the need to pursue an incubator mechanism. He also observed that although broad collaboration is needed, attention must be focused on coordinating policies across agencies to make sense. Mr. Marshall responded that the federal transformation workgroup is discussing standardizing eligibility for assistance by various agencies. Mr. Risser endorsed the idea of incubators, noting that Colorado received a federal grant to help consumers own and operate own businesses. One consumer developed a successful herb farm that he eventually sold to Celestial Seasonings. Mr. Risser noted that a three-year grant period may not be sufficient time for all successes to be recorded, and follow-up is needed to identify other successes. KANSAS CONSUMER-DRIVEN STATEMENT Randy G. Johnson, Program Specialist, Consumer Affairs and Development, Kansas Health Care Policy–Mental Health, noted that his charge is to ensure that Kansas fosters the growth of a healthy, thriving consumer movement and consumer-driven system. Kansas has held a series of summit meetings on each goal of the New Freedom Commission. The 2005 Kansas Recovery Conference hosted a summit to develop an operational definition of “consumer driven,” with separate discussions for children and adults. Key words that consumers use include consumer involvement, consumer-run organizations, empowerment, independence, peer-to-peer support, help-centered, recovery-oriented, having a voice, excellence, and having options/choices. Mr. Johnson expressed pride in Kansas’s work, but acknowledged that work is in progress. The working definition in Kansas for consumer driven is a “system in which no aspect—no service delivery, no meeting, no planning—in which the voice of the consumer, both collective and individual, is not present and considered paramount.” Kansas ’s Recovery Conferences, an essential part of the state’s system, have attracted as many as 900 people, 15 percent of Kansas’s target population caseload. Over time, new leaders have been emerging; success stories and new initiatives serve as incentives for involvement. Kansas’s challenges include its demographics, with half its counties housing fewer than seven persons per square mile, and communication, a serious issue for persons living at the poverty level. The conferences serve as a major communication tool. Another important resource is the Self-Help Network at Wichita State University, which provides a broad menu of technical assistance and research support for consumer organizations. Kansas ’s consumer movement is based on four goals: leadership development, education of the public and consumers, training in specific skills, and research on evidence-based practices to guide activities in future years. Applicants for state grant funds for a consumer-run self-help initiative must address each goal; a beneficial effect of this approach is that more outcomes can be measured. Kansas is involving consumers in all its initiatives, building opportunities for leadership and educating members. Mr. Johnson identified a number of additional state consumer activities. Peer-to-peer assistance funds enable people to attend meetings, provide mutual technical assistance, and build advocacy skills. Speakers bureaus are under development. A Kansas Consumer Advisory Council for Adult Mental Health and a statewide leadership academy are major resources. The Self-Help Network is funded at $84,000, but matching funds and in-kind contributions bring its assets to $2 million. Ms. Stockdale noted that Tennessee convenes consumers twice a year, but providers attend, which impedes open consumer communication. Mr. Johnson noted that Kansas worked through a similar situation that culminated in a focus on self-direction. Kansas is awaiting word on an application for NIMH funding on evidence-based practices. Mr. Johnson noted that the children’s mental health team has developed training for attendant care accessible on the website and plans are underway to post a training course for adult care. Medication information on the website is changed on a regular basis, and it has been suggested that regular updates be sent to every children’s director and provider in the state as a training experience. Kansas consumers understand that getting a job is part of recovery, not an outcome of recovery. Mr. Fricks noted that Kansas is providing resources to build a network of grassroots consumer-run organizations, an approach lacking in Georgia. Mr. Johnson stated that he is working with the Consumer Advisory Council to post the leadership academy curriculum online. To reduce stigma, Mr. Johnson asserted, basic training on mental health issues should be available online to the public at large. Other initiatives include a consumer-as-provider training program that offers a semester-long program, in both classroom and distance-learning formats, to persons receiving services to enable them to work in the broad human services field. The percentage of graduates who go on to higher education is growing. The University of Kansas’s School of Social Welfare requires all students to take core training courses informed by consumer trainings and planning input. Discussion. Ms. Awai noted that Hawaii experiences considerable resistance to a recovery orientation, despite its moves to implement a certified peer services program. Mr. Johnson noted that in Kansas, getting centers to hire consumers in any role also has been a challenge. He advised talking to the state’s legal department about issues around dual relationships to resolve potential fears related to change and for consumers to compile information to respond to fears. Mr. Risser applauded Kansas’s efforts to build the capacities of its consumers. Ms. Stockdale echoed the need for consumer training in each state. Mr. Johnson reiterated the importance of interaction with state universities, which can draw federal matching funds and in-kind contributions. Ms. Johnson urged requiring reviewers to examine carefully consumer involvement in RFP application development, including attention to who is involved in the planning. She expressed interest in hearing about CMHS’s partnership with NIMH. Mr. Johnson noted that the National Association of Consumer Survivor Mental Health Administrators (NACSMHA) is seeking opportunities to provide technical assistance and build partnerships. Kansas is working to increase the number of consumer organizations per mental health catchment area and to ensure that consumer-run organizations have computers, Internet access, and regular training. REPORT ON THE NORTHWEST REGIONAL MEETING, SEATTLE, MAY 2005 Pat Risser, Member, CMHS Subcommittee on Consumer/Survivor Issues, reported that 80 people attended the CMHS regional consumer meeting in Seattle in May 2005. Two panelists each from Alaska, Idaho, Oregon, and Washington described their states’ primary needs, issues, and successes from a consumer/survivor perspective. Small groups met and recommended actions for each of the goals of the President’s New Freedom Commission. CONSUMER/SURVIVOR SUBCOMMITTEE CONSUMER-DRIVEN STATEMENT Pat Risser, Member, CMHS Subcommittee on Consumer/Survivor Issues, explained that the President’s New Freedom Commission final report used the terminology “family and consumer driven.” A committee has developed an operational definition for “family driven,” and, on behalf of this Subcommittee, Mr. Risser and Ms. Maceira-Lessley prepared an initial draft statement for consumer-driven care that includes a definition, guiding principles, characteristics, and next steps. Mr. Risser presented the document to the Subcommittee for discussion. A document that reflects the Subcommittee’s comments appears in Appendix A. Subcommittee members discussed the following related issues: The draft statement uses language; for consumer that appears in the Protection and Advocacy system; applicability of the definition is designed to be as broad as possible, inclusive of persons with severe and persistent mental illnesses as well as others who self-identify as consumers; it is important for consumers to set goals to achieve progress in recovery; individual service/recovery plans identify consumers’ goals, to which all services should be tied; and consumers must be involved in every agency, program, and policy, including those outside the mental health system. Guiding principles reflect an ideal situation that systems should strive to achieve; principles may overemphasize cultural diversity; the federal government should lead by hiring consumers; multiple systems (particularly Social Security and Vocational Rehabilitation) must create an integrated, supportive environment in which consumers do not risk losing benefits by working; and, as they are in areas of physical illnesses, consumers should be at the center of all decision making related to them; consumers should be thought of in the context of their lives, not just as their diagnosis, a practice that will help to reduce stigma; and reducing socioeconomic and insurance coverage disparities is an important consideration. Ms. Johnson referred to a 1989 NASMHPD position paper on the importance of consumers who are employed and involved in a system of supports. Subcommittee members discussed methods to secure input to the draft statement, including collaborating with consumer/survivor technical assistance centers, NACSMHA, CMHS teleconferences, information gathering in small groups, ADS Center’s e-newsletter, regional consumer meetings, professional associations, online e-mail forum, Alternatives Conference materials and evening caucus (Mr. Marshall will follow up on this activity), a Subcommittee teleconference, and national support groups for persons with mental illnesses. Ms. Johnson urged that provisions be made to attend to all the comments received. ANNAPOLIS COALITION ON THE BEHAVIORAL HEALTH WORKFORCE: CONSUMER/SURVIVOR ADVISORY PANEL Allen Daniels, Ed.D., Professor of Clinical Psychiatry, University of Cincinnati College of Medicine, identified difficulties in keeping the workforce educated and informed over the past two decades on such issues as managed care, shifts in financing, co-occurring disorders, patient safety, consumerism, recovery, cultural competence, performance/outcomes measurement, and evidence-based practices. He identified a series of paradoxes that impede advancement of the workforce, including training graduate students and residents for a world that no longer exists; those who spend the most time with consumers receive the least training; and people who do the training are isolated from consumers and their key issues; continuing education programs use ineffective strategies; trainers do not train in the field; consumers and families receive little educational support; little or no systematic planning is done for recruitment to the field; little supervision or mentoring is provided; career ladders and leadership development are haphazard; and service systems thwart competent performance. Sponsored by SAMHSA, the Annapolis Coalition serves as a neutral convener of stakeholders, think tank for summarizing and disseminating relevant literature and ideas, technical assistance center, and vehicle for strategic planning and collective action. The organization currently is developing a technical assistance plan for the field, staffing development of the National Strategic Plan (NSP) on workforce development, and broadening the focus to include recruitment and retention issues. The initial focus of the NSP is on the behavioral health specialty workforce. Areas for consideration include adult, child and adolescent, elderly, consumers and families, co-occurring disorders, prevention, and substance abuse, among others. The desired result is for SAMHSA and its federal partners to focus on a national workforce initiative that involves the state, county, and local levels, and individuals. Susan Bergeson, Vice President, Depression Bipolar Support Alliance, described consumer and family involvement in the Annapolis Coalition’s work, including a consumer and family committee led by two consumers, two family members, and two healthcare providers. The i nitial planning committee included 30 consumers and family member leaders. More than 600 consumers and family members have had input to date on the NSP. The highest priority goals are empowering consumers and families as caregivers and educators, using effective training strategies, securing financing that is adequate to maintain a qualified workforce and create incentives for excellence, and using interdisciplinary training to teach interdisciplinary practice. Ms. Bergeson suggested strategies for each goal; for example, to empower consumers and families, strategies include practicing certified peer specialist in every state within five years, with Medicaid/Medicare funding and block grants required to fund certified peer specialists and accreditation; family to family and peer to peer courses required for accreditation of programs; consumers/family members as teachers required for residency program funding; and consumers/family members on accrediting bodies and review boards. She invited Subcommittee members to offer input and guidance. Discussion. Mr. Risser noted a relative absence of integrated consumer-driven energy in the Annapolis Coalition’s work. Although the website lists a large consumer advisory group, no consumers are identified on the board of directors or steering committee. Ms. Bergeson responded that consumers need to work with professionals and champions to change the professions themselves, noting that she, as a consumer, is a member of the steering committee along with other consumers. She stated that the first strategy is to fight for certified peer specialists in every state, train doctors and residents, and install consumers on accrediting bodies and review boards. A change in the nursing profession, for example, requires professionals to drive the agenda. To Mr. Bosin’s question on which professions are included, Dr. Daniels responded that anyone who wants to come to the table is welcome. Mr. Bosin commented that the goal to empower consumers and families as caregivers and educators would not impact the majority of consumers who were not functioning at high levels. Ms. Bergeson responded that consumers around the country consider the top priority to be training the workforce to be more recovery and consumer oriented. Ms. Johnson questioned whether funds were available to disseminate information on the process to consumers. Ms. Bergeson replied that funds were not available for that purpose and that input typically is solicited online and wherever consumers and family members gather. Ms. Johnson asked about the coalition’s involvement in changing residency programs. Dr. Daniel responded that trying to engage all professional associations is being built into the strategic plan; some professions have shown interest and others have not. Ms. Johnson suggested attention to licensing, continuing education, and involving consumers in ethics training. Mr. Bosin noted that some mental health professionals feel they have as little control over what happens as do consumers. Mr. Risser suggested working with the Department of Education to institute a training system whereby assistance is given in exchange for community service. Dr. Daniels encouraged submission of ideas to the Annapolis Coalition website. Ms. Bergeson asserted that anti-stigma activity is at the core of the effort in working to make possible a full life in the community for everyone. PUBLIC COMMENT Kathy Muscari, Director, Consumer Organization and Networking Technical Assistance Center (CONTAC), reported that following the Subcommittee’s presentation on women and violence, CONTAC held training on trauma-informed peer support, at which 17 states were represented using a curriculum CONTAC developed, and training on evaluation methods in collaboration with the National Empowerment Center. Seventy-five people from across nation, Canada, and Guam attended. She thanked CMHS for the seed money for the program, noting that people are finding resources to convene in partnership and collaboration. Judene Shelley, Director, Consumer Technical Assistance Center , discussed the upcoming Alternatives Conference, for which not all who hoped for scholarships were awarded them, but she noted that additional funds may become available. Presenters will include a group of New Zealanders who have produced a documentary about returning to their roots and culture to recover from mental illness. About 200 participants have registered, with more than 130 scholarships awarded locally in Arizona for local consumers. Christine Sirimiglia, Director, National Mental Health Consumers’ Self-Help Clearinghouse, described two large projects, including one with the National Mental Health Association Consumer Supporter Technical Assistance Center (NCSTAC) and the Star Center to hold a National Peer Support Summit that will develop a white paper regarding standards for curricula and certification of peer specialists. Another project is related to workforce development, consumer-driven services, and cultural competence. Discussion. Mr. Marshall noted that CMHS’s peer specialist toolkit will be released in the coming months. Mr. Fricks stated that program certification can be different in every state if Medicaid is a payor, but common features may exist across programs. Ms. Sirimiglia observed that some counties certify peer specialists using their own standards. Dianne Dorlester, Director, Consumer Advocacy, NCSTAC, stated that the summit will focus on consensus on common values and principles, and forging an informal agreement. NCSTAC works with emerging consumer-run organizations and focuses on how they grow and sustain themselves. Publications will be revised and posted on the website on starting and sustaining consumer-run nonprofits. An expert has worked to incorporate Mary Ellen Copeland’s WRAP plan for personal wellness into an organizational context. NCSTAC has awarded five organizational establishment grants and three organizational systems transformation grants, for which NCSTAC has created a community assessment tool of strengths and needs and resources in the community to focus on consumer-driven transformation activities and recovery. Ms. Dorlester stated that she shares an appreciation for and concerns about the process of the Annapolis Coalition, urging CMHS to ensure sufficient consumer input and consumer-driven work. She offered her organization as a resource. Ramiro Guevara, Director, STARCenter, stated that his organization works to promote cultural competency by means of, for example, teleconferences and listening sessions. The center is working with consumers of color to determine ways to improve training. On the horizon is a project to identify successful peer-run organizations. Pamela King, Interim Executive Director, On Our Own, Montgomery Country, Maryland, is working to set goals and objectives, establish board training, and hire staff for this drop-in center. Mr. Fricks recessed the meeting at 4:45 p.m. Subcommittee members reconvened at 9:00 a.m. the following morning, and Mr. Fricks introduced National Advisory Council member Carlette Randall, M.S.W., a new member of the Subcommittee. SAMHSA ADMINISTRATOR’S REPORT Charles G. Curie, M.A., A.C.S.W., discussed the importance of defining the terms consumer- and family-driven. He recognized that persons occasionally may need more supports, which should be viewed as a temporary situation, and that those supports also should be consumer driven. He asked Subcommittee members to consider how to define consumer driven for the Federal Action Agenda. Mr. Curie presented an overview of the Federal government’s role, beginning with Dorothea Dix’s view that mental illness should be treated, through the signing of the Mental Health Act of 1963 by President Kennedy, which affirmed that mental illnesses can be treated and that people can be part of a community. The 1980 Carter Commission, which described a fragmented system in which people were unable to gaining access to treatment, affirmed the notion that people can live in the community and developed a community approach. The CSP movement in the 1980s and 1990s guided mental health policy development until publication in 1999 of the landmark first Surgeon General’s report on mental health, which declared that treatment works for mental illnesses. President Bush’s New Freedom Commission affirmed that treatment works and asserted that recovery is real and that it should be the expectation. The Action Agenda is designed to operationalize recovery from a public policy and public finance standpoint. Mr. Curie asserted the need to work toward communicating with people who do not see how mental health affects them. Mental illnesses are not to be feared; treatment has positive results; recovery is the expectation; and suicide must be prevented are essential messages. Discussion. Mr. Risser expressed concern that SAMHSA has scheduled a conference on homelessness in conflict with the Alternatives Conference. Mr. Curie assured the Subcommittee that either he or Ms. Powers would attend Alternatives. Mr. Bosin observed that more important than transforming the mental health system is transforming the lives of the people who are served. Mr. Curie concurred, noting that progress is lagging on employment, for example, because systems have not focused on incentives to hold themselves accountable to assure that employment is the outcome. He stated that the NOMs will measure employment for the first time. Ms. Stockdale noted her own fears, under the provisions of the Ticket to Work program, in seeking employment, because once disability benefits are relinquished, they are more difficult to get back. She noted further that funding to enable consumers to attend policy meetings would help to make their voices heard, particularly on rural issues and transportation. Ms. Awai noted that consumers in Hawaii have similar experiences, including loss of housing resulting from Section 8 program cuts. Ms. Randall noted that program requirements for Medicaid and Social Security clash. Mr. Curie noted that it is essential to educate society that recovery is the expectation and that appropriate investments should be made. Ms. Johnson identified the importance of addressing poverty and housing, and developing a partnership with NIMH on research. Regarding evidence-based practices, she expressed concern about whose evidence and what base. A consumer-directed research agenda must be more robust. Mr. Risser noted that bottlenecks exist in states in distributing funds from the federal to the local level. Mr. Curie responded that the Federal Action Agenda addresses that factor. With 20 agencies aligned around 70 action steps, the goal is for federal government to speak with one voice and provide incentives and technical assistance for state transformation. He encouraged the Subcommittee to set priorities for the steps articulated in the Federal Action Agenda. CMHS STATEWIDE CONSUMER NETWORK GRANT PROGRAM Commander Wanda Finch, Public Health Officer, CMHS, reported that SAMHSA has awarded Statewide Consumer Network grants to 19 organizations to strengthen organizational relationships, improve leadership and business management skills, and identify technical assistance needs of consumers to be catalysts of transformation. The grants also can enhance state capacity and infrastructure to target recovery and resiliency. Activities include educating the public through a variety of strategies that mental health care is essential to overall health. Grantees can promote recovery and resilience through self-help models and partnerships with academic institutions to develop and evaluate self-help models and innovative ways to promote mental health recovery. Grantees also will promote the use of technology to access mental health care and information. Mr. Fricks observed that more impact occurs when funds go directly to consumer organizations. Commander Finch stated that grantees meet in a grantee institute prior to Alternatives. Ms. Stockdale urged CMHS to consider new leaders as members of committees and councils. Mr. Marshall invited suggestions for volunteers. SAMHSA MENTAL HEALTH TRANSFORMATION STATE INCENTIVE GRANTS Crystal Blyler, Ph.D., Social Science Analyst, CMHS, presented an overview of the Mental Health Transformation State Incentive Grants (MHT SIG), designed to help states, territories, and the District of Columbia to compile comprehensive state mental health plans to respond to the needs and preferences of consumers and families, overcome problems of fragmentation, and leverage resources across multiple agencies that administer state and federal funds. Grants will be coordinated by the office of the governor (or chief executive) to support dialogue among all stakeholders, reach beyond the traditional state mental health agency, and address the range of treatment and support service programs needed. The desired result is for the plan to provide an extensive and coordinated state system of services and supports that work to foster consumer independence and their ability to live, work, learn, and participate fully in their communities. For 2005 MHT SIGs will total $18.769 million, with six or seven grants funded annually at $1.5-$3.0 million for up to five years in each state. Federally recognized American Indian/Alaska Native tribes or tribal organizations also are eligible. Allowable activities for the infrastructure grants include developing financing strategies, organizational/structural change, developing consumer and family networks, policy formulation, workforce development, data infrastructure/MIS development, and communications/public awareness activities. In each state the chief executive will appoint a Transformation Working Group (TWG) of senior executives of all entities that deliver, fund, or administer services and supports used or needed by people with mental illnesses and/or their families, to be led by a full-time, dynamic chairperson. Mandatory members include state mental health commissioners, chief executive’s office, youth and adult mental health consumers and family members, Medicare and Medicaid services, child welfare, and criminal and juvenile justice; housing and employment are recommended partners. Mr. Fricks observed that in the context of states’ tight budgets, dynamic leadership may be seen as too expensive for this limited funding source. He expressed concern about a disconnect in this top-down approach from the power of grassroots transformation. Mr. Risser asserted that consumers and family members of youth should have more than just one seat out of six and that the requirements must be clearly defined. Ms. Johnson urged that states guarantee that consumers and family members from outside government are selected to serve on the TWG. Mr. Bosin asserted that housing and employment agencies should be mandatory members. Dr. Blyler responded that the list was a compromise. She stated that TWG members are to be representative of the racial/ethnic diversity of the state, or states must explain how they will address issues of diversity and cultural competence. Mr. Bosin suggested proportionate gender representation. Dr. Blyler explained that strategies have been created to collaborate with state mental health planning and advisory councils (PAC), who review block grant plans each year. Ms. Johnson identified the need for training and orientation of PACs on the legislation that empowers them and on leadership skills. She noted that certain PACs have been controlled by state, an inherent weakness in the structure. Grants require a needs assessment, inventory of resources, and Comprehensive State Mental Health Plan. SAMHSA must approve each product before grantees move to the next step. Ms. Johnson asked how SAMHSA approval will ensure that what is presented in documents reflects the facts. Dr. Blyler responded that site visits are planned, but that more thought will be needed to develop such strategies. Mr. Risser suggested scheduling site visits during PAC meetings and surveying PAC members to determine the extent of their involvement. Dr. Blyler stated that specific GPRA infrastructure indicators will be measured and that specific indicators will measure consumer-driven care. Ms. Johnson stated the need to identify values related to measures and to incorporate a goal to measure training. Mr. Risser urged incorporating values related to recovery and indicators relevant to consumers. Mr. Fricks emphasized the growing importance of consumer driven and of the consumer movement in transformation. Dr. Blyler observed that infrastructure changes and related outcome measures will take time. SAMHSA also will look at NOMs through the existing block grant reporting system. Outcomes include symptoms; employment and school enrollment; criminal justice involvement; family and living conditions (including housing); access to services by age, gender, race, and ethnicity; psychiatric inpatient beds; and social support/connectedness. In addition to NOMs, SAMHSA will conduct an independent cross-site evaluation; under discussion are process measures to determine why a program is effective or not, recovery measures, and cost-efficiency measures. Consumer researchers are creating a compendium of tested recovery measures, but the evaluation’s look and scope is under development. Ms. Johnson pointed out that the GPRA measure related to number of consumer and family members is weak if it does not characterize their activities. She noted also that some states have no data. Dr. Blyler acknowledged the need to boost the quality and quantity of data. Ms. Johnson also noted that the people involved in the block grant and the state protection and advocacy activity are the same people. She urged using the term “recovery-based” rather than “recovery-oriented.” Ms. Randall suggested that access to the road to recovery should be measured, and Dr. Blyler responded that she will consider how that would be measured. Mr. Risser stated that recovery is difficult to measure and that systems do not do it well, particularly because recovery is a growth process. One cannot measure speed in a car by taking a snapshot. Mr. Bosin suggested that measures include income or assets. Dr. Blyler stated that the applications are to be reviewed by the National Advisory Council and awards made by September 30. Ms. Johnson urged CMHS to publicize the awards in the states to enlist broad participation, because consumers do not see this as a public activity. Dr. Blyler stated that MHT SIGs required consumer input in the preparation of applications; consumers as mandatory members of TWG; a consumer-driven and recovery-focused comprehensive plan; addressing the goals of the New Freedom Commission; involvement in developing, implementing, evaluating, and sustaining the plan; full partnership in development of the plan. GRPA measures about number of consumers; and a possible cross-site evaluation of recovery. Mr. Bosin asked whether consumers and family members were involved in the design of the grant announcement, to which Dr. Blyler responded that staff of SAMHSA’s Office of Consumer Affairs were involved and a conference call with NASMHPD produced ideas. Only federal staff can write grant announcements. Mr. Risser urged a mechanism for consumers from statewide organizations to volunteer to serve on the TWGs to enhance representation and transformation of system. Dr. Blyler stated that next steps for the initiative include active involvement of government project officers and the Transformation Action Initiative to provide technical assistance to states on consumer-driven care and involvement. A webpage is planned for MHT SIGs. Mr. Fricks expressed appreciation for this work, but disappointment with the small amount of funds Congress allocated to implement transformation. He concurred with Ms. Johnson and Mr. Risser about weaknesses in this top-down process. Ms. Johnson acknowledged that this initiative is seen as a learning experience in technical assistance for consumer-driven care and suggested linking it with the state networking grants. Mr. Bosin described a broader picture, wherein most people with serious mental illnesses are poor, marginally or unemployed, and therefore dependent on a variety of supports and services that emanate from federal programs that constrain consumers’ ability to move forward in their lives. He asked how this program will coordinate federal and state policies and funding sources to make difference. Dr. Blyler responded that the responsibility for coordinating federal programs is with the Federal Working Group and that people on the MHT SIG TWG will work closely with that group. Mr. Bosin emphasized that coordination of benefit programs remains a federal issue. CMHS DIRECTOR KATHRYN POWER joined the Subcommittee briefly, greeted members, and departed to continue radio interviews on the new Transformation Action Agenda. SAMHSA TRANSFORMATION ACTION INITIATIVE CMHS is assessing the relevance of its $44 million technical assistance portfolio to reflect the current priorities of transformation and recovery. Working with its 50 technical assistance providers, CMHS is setting priorities to align its work with the current agenda and to eliminate barriers to providing technical assistance. CMHS’s technical assistance providers identified such signs of success as technical assistance aligned with the transformation agenda, coordinated CMHS program priorities, focus on capabilities, and strategic planning process. Barriers include duplication of effort, lack of communication, lack of stakeholder engagement, limited time for planning, technical assistance driven by federal budget and not grantees, and sustainability of learning and funding. Recommendations for transformation include: create a vision for technical assistance; expand technical assistance provider opportunities for consumers, families, and youth; reinforce quality improvement processes; develop a technical assistance matrix; establish a learning community for technical assistance providers; and facilitate collaboration within and across projects. CMHS staff have engaged in cross-center activities to provide broad expertise in content, technical expertise, and centralized planning. The approach embraces organizational architecture (business perspective), a phased-in implementation strategy, building on historical strengths, recognizing areas for improvement, incorporating feedback from stakeholders, and expanding partnerships. Initial goals were to align technical assistance with the transformation agenda, expand CMHS’s capacity to address learning needs, emphasize quality and accountability, reinforce collaboration with varied stakeholders including consumers, and encourage sustainability of impact. Ms. Johnson expressed concern about the statement includingconsumers and suggested including evaluation as a sign of success. Ms. Moore highlighted the need to identify unique resources across states, planning processes, and other concerns related to a consumer-driven environment in which consumers can drive how money is spent. Ms. Moore identified priorities for mental health transformation: leadership, comprehensive mental health plans, individualized plans of care, elimination of disparities, evidence-based practices, and workforce development. Mr. Risser noted the importance of how consumers provide and direct services in ways meaningful to them. He urged consideration of the basis on which evidence is gathered—evidence of recovery, or of cost savings?—to ensure relevance to consumers’ lives. He asserted that disparities relate to cultural and racial differences, but also to rural populations, veterans, and others not necessarily defined; consumers need to be part of the voice that defines that. Mr. Fricks observed that consumer-driven is not listed as a priority. Ms. Randall observed the need for cultural competency in choosing and applying evidence-based practices. Ms. Moore stated that consumer-driven is considered to be an underlying factor for all priorities. Ms. Randall raised the issue of evidence-based practices as helpful or harmful to Native communities. Ms. Moore noted that contractual relationships have been established among HHS/SAMHSA, technical assistance vendor(s), and the Office of Personnel Management to support other federal agencies in developing an organizational framework. The new contractor, collocated with the CMHS team, will help with skill building, leadership training, quality improvement, and change management. Critical questions remain about the technical assistance framework and effective approaches and methods. To a question from Mr. Bosin, Ms. Moore replied that the TAI will keep federal transformation partners involved informed. Ms. Randall asked how collaboration will be operationalized and buy-in achieved. Ms. Moore responded that the FWG is the strategic point for that collaboration. Mr. Bosin requested information on the FWG and its process. NATIONAL ADVISORY COUNCIL RECOMMENDATIONS
During the discussion, Mr. Bosin expressed concern about using the term consumer too broadly, to include individuals whose experience with mental health problems includes just psychotherapy or psychopharmacology, when membership of advisory bodies must be defined. Other Subcommittee members disagreed, stating that the term is appropriate for the context. Mr. Bosin suggested elaborating on previous recommendations on trauma and employment. He also suggested inviting the commissioners of Social Security and Vocational Rehabilitation to speak to the Subcommittee. COUNCIL ROUNDTABLE Public Comment. Time was set aside for public comment, but no one chose to speak. Adjournment. Mr. Fricks adjourned the meeting at 2:25 p.m. Appendix B. Speakers List
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