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Mental Health ProgramsAbout CMHSNational Advisory Council Subcommittee on Consumer/Survivor IssuesWashington, D.C. Welcome and Introductions CMHS Director's Report
CMHS focuses also on several other important grant programs, including elimination of seclusion and restraint, consumer network grants, and Systems of Care. Ms. Power described the process of mental health transformation called for by the President’s New Freedom Commission on Mental Health, based on the principle of recovery as an expected outcome. Readiness to change and to risk determines the pace, scope, and character of transformation. A major aspect of transformation is preparing people for change—a difficult process. Mr. Risser noted that economic conditions may force the mental health system out of communities and back to institution-based care. Ms. Power explained that transformation implies positive change driven by internal motivation rather than merely external circumstance. Funding decisions in some states are likely to prompt advocates to urge those states to turn to transformational thinking. Noting that states will be asked to transform their systems in similar fashion, Ms. Power outlined federal steps taken toward transformation:
Deductive thinking and capabilities-based planning respond to emerging challenges and lead to an infrastructure that builds responsive capacity. The mental health system currently is moving toward a community-based system; the next step may be a distributed, individualized support system based on recovery as the expected outcome and supported by individualized plans of care. Several initial steps of the federal action agenda for transformation have been accomplished, including establishment of a work team, compilation of an inventory of CMHS’s portfolio cross-walked with the goals and recommendations of New Freedom Commission, creation and convening of the Federal Partners Workgroup, requested and received federal partners’ inventory and “wish list,” produced federal action agenda, CMHS-initiated strategic plan development, SAMHSA Matrix Workgroup on Mental Health Transformation convened; and developed FY05 budget plan. The federal action agenda is based on the conviction that mental illnesses are treatable and recovery the expectation. All federal partner agencies have agreed to conform their programs and activities to reflect this value. Practical, limited steps will characterize this first year of a five-year transformation arc. Secretary Thompson and Mr. Curie plan to establish a Federal Executive Steering Committee to assure that the group’s work is embraced at the highest levels and carried forward. In the FY05 budget $44 million in state incentive grants for transformation has been requested, a key component of the transformation strategy. In a competitive process, states would describe how they would use the funds to develop and implement their Comprehensive State Mental Health Plans with a view toward transformation. If the budget does not pass, new plans will be devised. Discussion. Mr. Fricks noted the need for transformation in the way Medicaid pays for services. Noting that mental health reforms typically are imposed from outside, Mr. Brock asserted that providers whose expertise is based on experience can serve as change agents. Ms. Power responded that transformation is not a top-down wholesale change, but rather it depends on readiness and willingness of individuals to change. Transformation must acknowledge day-to-day needs and demands of the people the system serves, and consumer input at all levels must inform on what works well. Mr. Fricks explained the importance of the individual service plan (ISP) as a lever for change. The ISP’s goals must reflect the person’s goals; funding must be tied to recovery goals. Georgia has changed the name of the mechanism to individual service/recovery plan. Ms. Power acknowledged the value of this approach in the states and of the importance of grassroots activity, and the criticality also of making changes in Medicaid. She urged consumers to think in terms of transformation to counteract the adverse effects of shrinking budgets on mental health services. Dr. Caras suggested that CMHS provide technical assistance to promote transformation, such as training in recovery-based treatment planning. Ms. Maceira-Lessley observed the need for educating states on the possibilities for transformation, particularly on the importance of self-help alternatives. Ms. Power acknowledged the challenge of speaking to multiple audiences to project the notion of readiness to change and willingness to risk. Mr. Risser identified the need to bring states on board with the vision of transformation. Ms. Power discussed expanding beyond the Federal Action Agenda to other constituency groups, including consumer groups, self-help groups, and trade associations. The National Association of State Mental Health Program Directors (NASMHPD) has compiled a database of state activities related to the New Freedom Commission report and transformation and will offer targeted technical assistance. Grants to support comprehensive planning are hoped to bring states to the table. CMHS will work with subgroups of NASMHPD on comprehensive plans and will conduct dialogues on State Infrastructure Grants to give CMHS guidance. CMHS staff have been building internal readiness for transformation. Ms. Yokote urged consideration of how consumers can offer input regarding systems change. Ms. Power suggested that consumers participate in developing Comprehensive State Mental Health Plans. Ms. Yokote encouraged a connection between consumers and HUD housing, and promoting regulations to waive confidentiality in public housing so officials can share information on residents with emergency personnel. Ms. Johnson urged that consumers participate in the leadership of the transformation process and that supporting consumer-run services be a requirement. Mr. Brock urged CMHS to fund regional consumer/survivor frameworks and to support a national coalition of regional groups. Dr. Caras suggested increased focus on prevention in communities and on a public health approach to domestic violence. Ms. Power responded that although prevention is not part of the transformation discussion, CMHS is working to link the two. Welcome and Introductions (cont.) Old Business Minutes. The minutes of the September 2003 subcommittee meeting were approved as presented.
Status of Recommendations. Mr. del Vecchio stated that, regarding the subcommittee’s recommendations presented at the last Council meeting, CMHS is developing a consumer-operated, culturally competent, interactive website of resources for consumers and consumer groups. CMHS plans to increase support for jobs, including the employment of consumers as funded service providers. The peer resources center is looking at models of peer support specialists and ways to advance that initiative. CMHS has increased its focus on recovery and rehabilitation and will ensure community integration. A cross-disability advisory body will be convened with representation of disabilities in proportion to those served by the Center for Medicare and Medicaid Services (CMS). CMHS continues to support consumer technical assistance centers and two Alternatives Conferences. The next Alternatives will be held in October 2004, sponsored by the National Mental Health Consumer Self-Help Clearinghouse. Funding has been increased to $70,000 for State Networking grants for three years. Mr. Risser raised the issue of using people-first language and recommended “people who receive or have received mental health services.” Elimination of Barriers Initiative Mr. del Vecchio discussed the Elimination of Barriers Initiative (EBI) social marketing effort regarding discrimination and stigma.The 1999 Surgeon General’s report asserted that stigma and discrimination play a significant role in people’s lives. At the CMHS-sponsored Spring to Action meeting in 2004, 400 individuals conferred on efforts to address seclusion and restraint and learned about emerging research on the issue. Research has shown that the public knows more about mental health issues than before, but social distance issues are greater than ever. Effective approaches to prejudice, discrimination, and stigma include interpersonal contact with people who self-identify as consumers. CMHS has established the ADS Center, the Resource Center to Address Discrimination and Stigma (www.adscenter.org). The ADS Center averages 100,000 hits monthly on its website, hosts a series of free teleconferences on training, and archives the conference calls. CMHS also recognizes the need to identify evidence-based practices to address discrimination and stigma and how to evaluate progress in a systematic way. The EBI, an eight-state demonstration to support and evaluate a program to address discrimination and stigma associated with mental illnesses, is currently in the second of a three-year program. Preliminary materials that reflect a recovery/strengths-based approach were designed to garner feedback to be able to develop better products to inform people about these important issues. Ms. Troust described the goal, strategies, collaborative implementation, TV and radio public service announcements (PSAs), and how states are adopting and rolling out the campaign. The goal is to achieve a society that promotes acceptance of all persons with mental illnesses. The objectives are to counter discrimination and stigma, reduce barriers to treatment, and build public support for recovery. Personal contact has been found to reduce discrimination and stigma. An awards program rewards exemplary work in addressing discrimination and stigma at the state level. Pilot states include California, Florida, Massachusetts, North Carolina, Ohio, Pennsylvania, Texas, and Wisconsin. Departments of mental health in each state have the lead for rollout. All states participate in the general-public campaign; several take part in the business-community campaign; and several participate in the high school-based campaign. The EBI will track each campaign and each state’s materials and efforts, create case studies at the state level, and conduct a process evaluation. A toolkit will be developed to roll out nationally at the conclusion of the demonstration project in September 2005. Following early viewings, feedback on PSAs included recommendations to take a strength-based approach and to focus on recovery. Focus groups recommended against using pejorative language and references to “mental illness”; language in the PSAs was changed to “mental health problems.” Discussion. Dr. Caras suggested possible confusion in using “mental health problems” instead of “mental illness”; she noted that no language change was necessary to work through the early stigma of cancer. Mr. del Vecchio explained that polling data found “mental illness” to be a turn-off, while “mental health problems” created better receptivity. The campaign’s call for action is to get the facts about mental health from a brochure, which refers to mental illness. Mr. del Vecchio stated that the majority of national mental health groups concurred with the strategy. Mr. Risser questioned which barriers are targeted; when he trains people who use mental health services on how to take care of themselves, he stresses techniques to look like everyone else. Mr. del Vecchio explained that the initiative targets barriers to housing and noted that community acceptance continues to be a major issue. Subcommittee members identified additional barriers, including securing life insurance, budget cuts, and cultural factors. Members of the audience urged communicating the idea of recovery as a new concept, identified racism as a barrier, and explained that “mental illness” masks recognition of a trauma-damaged soul. In the general PSA portfolio, all actors, voice-over talent, and photo subjects are consumers/people who have received mental health services. Drop-in articles featuring stories of recovery in each state are being prepared, as is a bilingual brochure with state-specific bookmarks with additional resources and information. A bilingual 800 number answered by SAMHSA’s National Mental Health Information Center, plus two websites (www.nuestrasaludmental.samhsa.gov [June launch]) help people get the facts about mental health. People’s stories of recovery are to be posted. Following a presentation of the PSAs to the subcommittee, discussion continued. Several members called into question the definition of recovery and how recovery was portrayed. Dr. Caras expressed satisfaction with the brochure. Ms. Troust noted that the PSA still are in development. Dr. Caras pointed out that “normal” imprints the word “abnormal” and suggested “ordinary” instead. An audience member applauded efforts to translate the spots into Spanish, but cultural translation problems are present and the narrator seems to be reading from a script. Dr. Caras recommended deleting references to stigma alone, instead using discrimination and stigma. Ms. Troust stated that Ohio’s school project includes a teen speakers’ bureau and technical assistance for establishing speakers’ bureaus. In Pennsylvania 40 consumer advocates have been trained in public speaking and persuasive storytelling. Mr. Risser expressed interest in learning about the impact of EBI in terms of the NIMBY effect and of people’s ability to choose services and overcome fear. Mr. del Vecchio described corresponding work and future efforts. Since the establishment of the ADS Center and implementation of EBI, the SAMHSA matrix and the New Freedom Commission report have become driving forces. The New Freedom Commission’s first recommendation urges SAMHSA to undertake a national public education effort to address discrimination and stigma, particularly among older adults, rural communities, and diverse communities, including people of color. CMHS has sponsored two roundtable meetings on older adults and has commissioned monographs on self-disclosure and on the role of stigma in the historical treatment of African American consumers. EBI research is not outcomes focused, but CMHS is collaborating with the National Institute of Mental Health (NIMH) to conduct more rigorous outcomes research. CMHS Consumer Direction Initiative and the CMHS Self-Help Survey Jon Brock, M.P.A., and J. Rock Johnson, J.D., Members, CMHS National Advisory Council Subcommittee on Consumer/Survivor Issues; Ingrid Goldstrom, M.Sc., Social Science Analyst, Division of State and Community Systems Development, CMHS In the context of transformation, Mr. Brock pointed out that changes in public mental health policy typically are prompted by informed outsiders, rather than from within the consumer community. Because public mental health professionals, programs, and policies do not engage consumer/survivors’ full humanity, by focusing more on diagnoses than persons, sustained reform is not possible. The self-determination movement began as a side effect of deinstitutionalization of people with developmental disabilities and has entered the mental health arena more fully developed than other attempts to change public mental health programs and policies. Mr. Brock and Ms. Johnson have participated in a self-determination initiative that has attempted to engage public mental health policy with the issues of self-determination. Mr. Brock believes the movement has potential to sustain long-term reform in public mental health policy, particularly because it offers the possibility of having consumer-providers compete and cooperate with traditional mental health providers. Ms. Johnson described Independence Plus, a CMS-sponsored meeting held several years ago that identified barriers to self-determination, including trauma and an authoritarian approach. Training and education are required for people who work as professionals in the mental health system. One strategy is to bring people who are using services into classrooms to discuss creating and developing one-to-one relationships and to describe their experiences with mental health, mental illnesses, and substance abuse. Ms. Johnson urged SAMHSA/CMHS to work with CMS, other systems, and individuals in a strategic, collaborative relationship, ensuring that protections are retained; articulate a set of principles that provide not just for input but also for inclusion. It is important to develop a range of mechanisms for peers to move consumers into paid positions in the mental health system. Mr. Fricks cautioned that self-determination can be masked as a way to place a cap on funding. Mr. Brock stated that the report of the March 2004 meeting on self-determination has not yet been issued. Participants generated a series of recommendations in development of SAMHSA’s national action plan to promote self-determination or self-direction. Ms. Johnson noted that “consumer direction” reflects a professional bias; the challenge is to move from a services mentality to a community mentality, to put economic power into individuals’ hands, and to look toward outcomes for individuals, not programs. Such outcomes include living where and with whom one wants, a social support system of one’s own choosing, and opportunities to engage in productive activities that increase economic security. Strategies to achieve these outcomes include medical savings accounts and changing asset limits in Medicaid regulations. Ms. Johnson reiterated the need for education and reeducation, to confront Medicaid’s basis on medical model, and to set aside funds in the block grant for peer-run services linked to work force development. Mr. Brock commended Thomas Nerney’s draft monograph “Quality Issues in Consumer/Family Direction,” designed to build a framework for a human services system that acknowledges the humanity of people who have experienced disability. Mr. Risser commended the website of the University of Illinois–Chicago’s National Research and Training Center on Psychiatric Disability (www.psych.uic.edu/uicnrtc/sdconfpapers.htm). Mr. Fricks identified several additional resources on self-determination that have issued publications on self-determination and employment. Ms. Johnson urged conducting demonstration programs for children and families, and establishing an interagency council focused on self-determination. Mr. del Vecchio noted that in the Jacksonville, Florida, area, these models have been implemented successfully. Legislation has been introduced to expand the program and to fund demonstrations for children. CMHS is considering a state-focused educational project. Mr. Fricks stated that Georgia has an interest in collaborating with CMS; Georgia will not pass the 1115 waiver, but self-direction initiatives may be approached through the rehabilitation option. Ms. Goldstrom described survey findings on mental health mutual support groups, self-help organizations, and consumer-operated services. Over time people have received more mental health services and supports in nontraditional ways. A 1990 study found the self-help sector to be of undisputed help, and the 2003 President’s New Freedom Commission articulated the central role of self-help. State mental health agencies now support offices of consumer affairs and organizations that provide consumer and family services. Antagonism has abated, and 94 percent of groups and organizations receive referrals from providers; major studies show that few participants see their activities as substitutes for traditional services. The survey provides the first national estimates of number, use, and characteristics of selected types of consumer groups and self-help organizations. Each phase of the survey involved consumers and families. The survey covered the 172 counties in 34 states that also were surveyed in the National Comorbidity Survey, setting up the possibility for enhanced future analytical work. A rigorous multifaceted process was undertaken to identify and screen all possible groups that fit eligibility requirements for groups and to identify qualified interviewees. Exclusions included groups that addressed solely substance abuse issues, “life crises,” addictions, anger management, developmental disabilities, Alzheimer’s disease, and lodges and clubhouses. National estimates are based on a representative sample. Eighty percent of the surveyed groups view reduction of discrimination and stigma as a focus of their activities, and nearly the same percentage engage in human rights advocacy. Other activities include providing help with housing, jobs, and social opportunities. Ms. Goldstrom pointed out that the data highlight a broad array of services and supports deemed critical to the transformation of the mental health system. Large proportions of the groups and organizations possess the infrastructure to fill in gaps in the traditional system of care and help consumers and families access what they need in an atmosphere of mutual support and respect with a focus on recovery and resilience. Discussion. To subcommittee members’ questions, Ms. Goldstrom responded that definitions include family members, and co-occurring disorders were included. Mr. Fricks observed the difficulties encountered in including this sector in the Surgeon General’s reports on mental health and the New Freedom Commission report. The peer-to-peer model has ptential for support in the workplace; peers can help with negative self-talk, and employment services can be augmented to help deal with anxieties in the workplace. Ms. Goldstrom explained that scarce resources limited the scope of the survey, and many more peer-supported services might have been assessed; groups were included that provided both substance abuse and mental health services; and ethnicity and language data were collected. Ms. Johnson observed that peer services, a footnote to the Surgeon General’s report, now are mainstream providers. Mr. Brock suggested compiling a directory of the groups. Ms. Goldstrom stated that a good deal of contact information has been collected that remains to be processed. Mr. del Vecchio suggested that CMHS interns might be assigned to this project. Mr. Fricks cautioned against replacing mutual support. Discussion of President’s New Freedom Commission on Mental Health’s Final Report Dr. Aguilar-Gaxiola described difficulties experienced by people with depression who have economic troubles and speak only Spanish. He asserted that health disparities now are recognized as a public policy priority and looks forward to evidence emanating from NIMH-sponsored research. To eliminate health disparities, the focus must be on long-term changes, with recovery as a desired health outcome, regarding mental health, employment, self-care and independence, interpersonal relationships, community integration and participation—a good quality of life. Recovery as a desired mental health outcome means to live with few or no symptoms, to live a fulfilling and productive life despite having a disability, to work, learn, and participate fully in the community. The 1999 Surgeon General’s report on culture, race, and ethnicity recognized “striking disparities” in access, quality, and availability of mental health services for racial and ethnic minority Americans. Poverty associated with mental disorders is also associated with lack of jobs. The IOM’s “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care” echoes the issue of disparities experienced by minority groups in both access to and quality of care, and Dr. Aguilar-Gaxiola noted that these problems exist also in rural areas. Citing the NIMH-funded Mexican American Prevalence and Services Survey (MAPSS) of 15 disorders, Dr. Aguilar-Gaxiola explained how research can improve access to care. The survey’s findings show that cultural factors matter greatly in determining prevalence rates and utilization of services, particularly because when the sample was divided by Mexican born or U.S. born, prevalence rates varied considerably. The longer the immigrants lived in the U.S., the greater the prevalence of the disorders. MAPSS revealed patterns of mental health utilization of services that included mental health specialists, general medical, other professionals (e.g., faith, other medical), and the informal sector (e.g., healers, santeros, sobadores). Although consumer data has not yet been analyzed, MAPSS found that one in four received mental health services, compared with one in three in the Surgeon General’s report. In terms of cultural variables, one in three U.S.-born consumers, one in six immigrants, and one in ten migrant agricultural workers received any services. The main point of entry is the primary care setting, highlighting the importance of the mental health field working with primary care providers to deal with mental disorders in this population. Barriers to Latinos accessing services include lack of knowledge about where to receive treatment, location of treatment centers far from one’s residence, lack of transportation, lack of availability of Spanish-speaking professionals—all variables that can be modified—and stigma. At least 40 percent of the subjects were uninsured. To remedy the situation, Dr. Aguilar-Gaxiola recommended mounting a campaign to raise public awareness of mental health issues associated with adjustment to American society, dissemination of information on availability of mental health providers and how to access them, and making insurance available for mental health care. Similar findings have been reported for immigrant minorities in other parts of the world that are melting pots. It is necessary to learn more about protective factors that promote resilience. Dr. Aguilar-Gaxiola asserted that reducing health disparities requires local action to translate and disseminate evidence-based knowledge on mental health issues to key stakeholders, including consumers, their families, and policy makers. The next challenge is to translate research into action. Over the next decade, Dr. Aguilar-Gaxiola expects significant headway in improving quality of care, based on increased awareness of the need for change and production of new knowledge. He recommended culturally and linguistically competent, quality care that addresses all people with mental health needs by eliminating the symptoms of mental illness and improving functioning by attaining each individual’s maximum level of employment, self-care, etc. Culturally and linguistically competent quality care should promote creativity, innovation, flexibility, and accountability. He acknowledged the relevance of SAMHSA’s goals regarding rural populations. Ms. Maceira-Lessley posed a series of questions to the subcommittee. Why are Latinos not entering the mental health system? Why are so few Hispanic leaders and consumers involved? Why does federal mental health policy planning include representation by so few consumers of color? If significant numbers of consumers of color exist, they are separated geographically and probably are acculturated into existing constructs. Has bringing the recovery model to immigrant farm workers been considered? Dr. Aguilar-Gaxiola added that he anticipates cultural resistance among certain minorities regardless of the mental health model presented. Are consumers of color offered the services they want? Would the array of available services be different if more consumers of color had positions of leadership? The necessity for linguistic support and the prevalence of providers who do not share the consumers’ background impact on the quality of services. Will state and local organizations require leadership to make progress in recruiting advocates/leaders of color? More funding, training, technical assistance, mentorship, and passion are needed to support involvement of consumers. Ms. Maceira-Lessley described several California efforts to engage consumers of color. Kathy Muscari described CONTAC’s efforts to translate its Leadership Academy into Spanish and its plans to hold a bilingual academy. Getting people to the table is important, but she acknowledged that leadership may be translated to that community in other ways. Discussion. Mr. Brock concurred in the need to grapple with what is not working in the Hispanic community and to translate better what is working in non-Hispanic groups. Mr. Risser identified barriers to access such as lack of awareness among providers of the effects of poverty and lack of transportation and time availability. He suggested examining efforts that will create attitude change among service providers. Dr. Caras suggested convening a homogeneous focus group of, for example, immigrants from Mexico to learn about their needs and the obstacles they face, and about what might make leadership appealing to make mental health services more widely available. Ms. Johnson suggested examining data on informal structures and thinking about how to promote informal networks. Mr. Brock suggested a focus for immigrants on issues of citizenry, with mental health part of the construct. Dr. Aguilar-Gaxiola asserted that the traditional medical model has not succeeded in providing culturally competent care. The challenge is to develop alternatives and innovative outreach strategies, and to document them. Public Comment Maggie Sheie-Lurie, Project Manager, Support Technical Assistance Resource (STAR) Center, stated that her organization focuses on self-help and diversity. She acknowledged the subcommittee’s promotion of multiyear funding for technical assistance centers and described STAR Center activities. The STAR Center sponsored the first of a series of leadership forums, initiated a series of teleconferences on self-help in diverse communities for which all speakers and facilitators were consumers (CD-ROMs available), funds scholarships to conferences, and anticipates broadening its publicity efforts. Kathy Muscari, Consumer Organization and Networking Technical Assistance Center (CONTAC), described CONTAC’s focus on developing leadership through skills-based training, mentorship, and identifying leaders within grassroots groups. Two recent workshops focused on recovery and WRAP in the mental health system for representatives of 12 states. CONTAC has experience and data that could be useful in developing standards for evidence-based practices related to consumer-run programs. She urged continuing support for technical assistance centers. Sara Thompson, National Consumer Supporter Technical Assistance Center, noted her organization’s efforts to help immigrant consumer groups develop nonprofit organizations and to plan strategically. A September 2004 meeting on recovery cosponsored by CONTAC will convene leaders on factors and trends in place for communities and systems that implement recovery-oriented services. Lisa Goodale, Peer-to-Peer Resource Center/DBSA, explained that this center serves people with all diagnoses based on the principle that peer support is essential to wellness and recovery, and that consumers working as individuals can help change systems and impart a message of hope and recovery. The center has compiled a list of all training programs, is developing a model curriculum for training peer specialists, and will pilot the curriculum with 40 consumers and then make revisions. The center is addressing the issue of accessibility to training. Yvonne Smith, Recovery 2020, urged attention to issues of poverty and race. She pointed out that groups without the structure or knowledge to apply for grants and scholarships cannot join the mainstream, that mentoring and other forms of leadership training are needed, and that dissemination of original publications on recovery is important. Consumer Advocate Yvonne Keyes commented that inherent racism impedes progress. Consumer Advocate Mike Freedman concurred with Ms. Keyes, noting that mental health problems must be viewed in both medical and social contexts. On the issue of leadership, he asserted that everyone is a leader, because we learn from one another. Discussion. Ms. Johnson urged that resources be made available to consumers for self-help and leadership training. Ms. Yokote observed that poverty is little understood by policy makers. The meeting recessed at 5:15 p.m. and reconvened the following morning at 9:15 a.m. Discussion of the President’s New Freedom Commission on Mental Health’s Final Report Dr. Blyler described SAMHSA’s leadership and activities in promoting evidence-based practices. Led by Dartmouth Psychiatric Research Center and multiple stakeholders, the National Evidence-Based Practices Project (NEBPP) has developed toolkits on implementation of evidence-based practices. Topics include supported employment, family psycho-education, integrated treatment of co-occurring mental health and substance abuse disorders, assertive community treatment (ACT), medication management, and illness management and recovery (self-help, social skills, and cognitive skills). Kits are anticipated to be available in August 2004. SAMHSA has shared the toolkits with CMS to see how Medicaid can pay for these evidence-based practices. In addition, the NEBPP is evaluating a demonstration in eight states of five of the toolkits, to be completed in September 2005. Data and feedback will be used to revise the kits; clearance will be obtained; and then the kits will be disseminated. SAMHSA is supporting states interested in implementing evidence-based practices by the following: funding NASMHPD’s National Evidence-Based Practices Center, which facilitates communication among states and provides technical assistance, funding a training grant program for states to implement the toolkits, cosponsoring with NIMH a small planning grant program for states regarding evidence-based practice, and funding development of toolkits for additional evidence-based practices, including consumer-operated services approaches, children’s services, supported housing, older adult services such as collaborative models in primary care, supported education, and trauma-informed ACT. Discussion. Dr. Blyler remarked that to date no practices have been identified as evidence-based practices for cultural competence, but some states currently are dealing with that issue in their grants. Dr. Caras urged SAMHSA to consider forced treatment in the context of trauma-informed ACT; Dr. Blyler stated that the trauma aspect of the program is separate from the women and violence multisite study in which treatment teams are educated about trauma and its effects and how to work with people with traumatic histories. Mr. Risser asserted that evidence-based practices are flawed when they do not acknowledge recovery as an individualized process and that most people who have used mental health services are survivors of abuse, trauma, and neglect, and not people who have medical diagnosis of schizophrenia. Dr. Blyler stated that measuring outcomes and needs in order to tailor services for individual people—for example, supported employment—is part of most of evidence-based practices. Mr. Fricks pointed out that many states provide supported employment without fidelity to the model of person-centered planning. Dr. Blyler acknowledged the need to develop fidelity measures. Mr. Risser expressed concern that Oregon is looking at evidence-based practices rigidly, with 25 percent of services now required to incorporate evidence-based practices; by the next biennium the requirement will rise to 50 percent. Mr. Fricks pointed to consumers in New York who had extensive input into requirements for evidence-based practices in that state, to be released soon. Mr. Brock echoed the need for major consumer input and of acceptance of consumer input by the professional world as the system is transformed. Dr. Blyler stated that evidence-based practices guide provision of services that can be proven to work, but they must also reflect recovery. Dr. Blyler continued her presentation of SAMHSA’s activities: funding the Evaluation Technical Assistance Center (www.tecathsri.org) at the Human Services Research Institute, with increased focus on implementing evidence-based practices and helping new services rise to the level of evidence-based practices, expanding the National Registry of Effective Programs and Practices (NREPP) to include mental health practices by means of a peer-review mechanism for listing, establishing standard grant mechanisms, funding best practices planning and implementation grants, and helping states develop plans for implementation of New Freedom Commission recommendations through the proposed mental health transformation grants. Dr. Campbell announced that the findings of the Consumer Operated Service Program will be rolled out at the Alternatives Conferencein October and then disseminated broadly. In response to concerns about the dangers that accompany evidence-based practices, Dr. Campbell pointed out that many interventions and clinical practices with no evidence base still are used today. Many coercive practices, such as seclusion and restraint, were thought to have therapeutic value, and rising deaths were not acknowledged as an adverse outcome. Most evidence-based practices, now embraced as innovative, come from the past, and most do not measure recovery as outcomes. The New Freedom Commission’s report can serve as a springboard for recovery- and consumer-oriented evidence-based practices. An important current struggle is to redefine the gatekeepers and the criteria for designation as evidence-based practices. SAMHSA’s process regarding the evidence base is broad enough to incorporate programs shown to have some efficacy. Dr. Campbell described the process of the Consumer Issues Subcommittee of the New Freedom Commission. As its only staff, Dan Fisher, M.D., chaired the subcommittee and Dr. Campbell served as report writer. They enlisted consumers to give public testimony and solicited recommendations via e-mail. Their strategy was to work toward inclusion of consumers in every aspect of the Commission, which proved to be a struggle. Dr. Campbell suggested the value of subcommittee members receiving copies of the New Freedom Commission consumer subcommittee report. Dr. Caras suggested inviting Drs. Fisher and Campbell to speak at a subsequent subcommittee meeting. Dr. Campbell noted that in the science-to-practice model, SAMHSA handles the practice and NIMH conducts the science, thus delegating the focus and nature of questions to a constituency that does not share many values or priorities of consumers. NIMH-produced evidence that SAMHSA would be bound to implement might not support an innovative, subjective, recovery-based system. It is important that NIMH research reflect the values of its constituents—SAMHSA and people who use mental health services. The Surgeon General’s report on culture, race, and ethnicity suggested ethnic-specific analyses in clinical trials. By producing its six toolkits, Dr. Campbell asserted, SAMHSA has reified the subject matter and the definition of what is evidence. SAMHSA funds, conducts research, markets the toolkits, and has created a technical assistance center—but consumers have not played a significant role in that process. She views this as a caution for SAMHSA. It will be important for SAMHSA to take a broader approach, to work with organizations most focused on this debate, and to educate staff about the value of a more inclusive approach that considers consumers’ perspectives about research outcomes. Dr. Campbell remarked that the rollout of the consumer-operated research initiative represents the culmination of the struggle for consumer-survivor researchers to get sufficient money to study strategies they believe work to foster recovery. Two important consequences of the study were providing to the Department of Veterans Affairs a preliminary report on cost outcomes to convince VA scientists, as part of the system transformation called for by the New Freedom Commission, to introduce peer-run programs for veterans nationwide, and to provide the same information for an Institute of Medicine paper on mental health care in the U.S. and what it would take to improve service delivery. Dr. Campbell described a selected, unofficial finding: For the most difficult way to find significance in an outcome, consumer-run drop-in programs are significant when offered as an adjunct to traditional mental health services. National Advisory Council Agenda and Recommendations Subcommittee members recommended the following to the CMHS National Advisory Council:
In addition the subcommittee planned to request a copy of the report of the New Freedom Commission’s Subcommittee on Consumers. Public Comment John Lessley, California Department of Mental Health , suggested asking focus group participants for suggestions on cultivating leaders at the local, state, and national levels from their communities. Technical assistance centers might become involved in organizing focus groups. Language regarding attention to disparities might be added to RFAs, thus incorporating greater emphasis on cultural competence. Advocate Mike Freedman observed that the New Freedom Commission has created fertile ground for consumer activism. He suggested proactively soliciting participation in focus groups of consumers living below the poverty level and experiencing language problems. Mr. Freedman also pointed out that no technical assistance center exists now on the West Coast. Discussion. Mr. Rogers stated that the Clearinghouse now does considerable work on the West Coast. Ms. Maceira-Lessley reported that consumers and family members in California participate on Medicaid review teams and serve as interpreters for focus groups. Dr. Caras stated that the subcommittee supports formation of the Federal Executive Steering Committee and CMHS participation, and encourages the committee to ensure that CMS funds self-directed mental health services. She urged CMHS to hire a high proportion of staff and contractors with disabilities who reflect diverse communities. Mr. del Vecchio responded that CMHS might retool its set-aside programs to create opportunities for consumer-owned businesses, working with the Small Business Administration to provide training to apply for disability set-asides. Mr. Brock emphasized the importance of self-determination language. Ms. Yokote urged taking steps to overcome barriers to self-employment, including engaging the Service Corps of Retired Executives. She urged CMS not to make benefits a disincentive to employment. Dr. Caras echoed the importance of micro-enterprise, self-direction, and employment, and stated that CMHS should hire consumers as mental health professionals. Ms. Yokote stated that a certain amount from Hawaii’s state block grant is appropriated to the state mental health council to create programs, coordinate services, and publish copies of mental health publications. Mr. Fricks stated that by removing agencies from the process, Medicaid paperwork can be avoided. The peer specialist program works as a voucher system. SAMHSA Administrator’s Report Mr. Curie commended CMHS Director Kathryn Power’s knowledge of the field, her strategic thinking and planning skills, and her value system that reflects consumer-driven, family-driven care. She leads SAMHSA’s efforts to develop a recovery-based action agenda, for which CMHS has compiled an inventory of funded initiatives and activities of 18 federal agencies with activities related to mental health. Based on the goals and recommendations of the commission report, the action agenda is meant to translate over time a sustained transformation process—as a first step. Although barriers are expected in mental health system transformation at the state, county, and local levels, the 18 federal agencies are aligned in this effort. In the FY05 budget, $44 million is proposed for state incentive grants for mental health transformation. States would submit competitive plans to work with local and county authorities and providers in translating the findings of the commission into action. SAMHSA anticipates bipartisan support. Following ratification by one remaining agency, the action agenda will become a national strategy. Mr. Curie described excitement surrounding development of consumer-driven individual recovery plans and implementation of evidence-based practices to move toward recovery. He acknowledged that consumer-run services and evidence-based practices that alleviate symptoms and promote recovery do not preclude the need for traditional treatment models. The current challenge to SAMHSA, the states, and consumers and families is to operationalize recovery in a way that embraces many pathways. SAMHSA has supported many good programs, Mr. Curie stated, but when he arrived, the agency had no strategic direction. One of his major goals is for SAMHSA to define itself as a services administration; to be sure services are available for people. SAMHSA’s role is to translate research into action, in collaboration with NIH institutes, in order to achieve SAMHSA’s mission to build resilience and facilitate recovery and its vision of a life in the community for everyone. He described the need to narrow the agency’s priorities to “redwoods” that will make a lasting difference in the lives of people. He explained that SAMHSA’s matrix helps to keep the focus and ensure relevance. Leveraging funds from a variety of agencies will facilitate mental health prevention, which has not been well developed to date. Discussion. Mr. Curie supported Mr. Fricks’s vision of transformed ISPs to reflect consumer-driven recovery plans; acknowledged Mr. Risser’s preference to refer to “people who have used mental health services” instead of “consumers” in the context of stigma reduction, but at the same time the need to have a useful shorthand. Ms. Yokote urged adding “discrimination” to the matrix designation “stigma,” and eventually drop “stigma.” Mr. Curie noted efforts to engage CMS in the transformation process. Ms. Maceira-Lessley asserted the importance of consumer involvement in Medicaid and Medicare issues. Mr. Brock urged developing regional consumer technical assistance centers with an eye toward building regional coalitions of local and state consumer groups. Mr. Curie explained that reliance on evidence-based practices does not exclude consumer-empowered services, for example, when consumers engage in the evaluation process, and that evidence-based practices help facilitate the recovery process. Ms. Maceira-Lessley suggested examining the protective factors shown to be important in the MAPSS study to keep certain groups of immigrants well and out of system. Mr. Risser asserted that budget cuts swing the pendulum to crisis mode in which people get institutional-based care from state hospitals, for example, instead of communities. Mr. Curie responded that the transformation process addresses that issue by seeking to increase stability in the community-based system of care to facilitate recovery and by informing states that the need to maintain their effort will not be waived. He noted that in many states revenues are returning. Mr. Rogers suggested setting aside state funds in the transformation grants for consumer-operated innovations and systems reform. Mr. Curie replied that these grants to support the planning process would require consumers at the table. National Advisory Council Agenda and Recommendations (cont.) Evaluation, Next Steps, and Closing Adjournment Next Subcommittee meeting: August 30-31, 2004
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