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National Advisory Council Subcommittee on Consumer/Survivor Issues

Washington, D.C.
AUGUST 30-31, 2004

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 Monday, August 30, 2004, at 10:00 a.m. Other members present included Jon Brock, M.P.A., Sylvia Caras, Ph.D., J. Rock Johnson, J.D., Patrick Risser, and Paula Stockdale.

Old Business
Update on Vacancies. CMHS Consumer Specialist Chris Marshall and members of the Subcommittee acknowledged the leadership and contributions of Jon Brock, Sylvia Caras, and Sharon Yokote, original members of the Subcommittee whose terms expire in November 2004.

Minutes from the June 2004 Subcommittee Meeting. Consideration of the minutes of the previous Subcommittee meeting was tabled until the next conference call.

Status of Recommendations. Mr. Marshall noted progress on several Subcommittee recommendations to the Council. The Alternatives Conference for consumers to be held in October 2004 retains its name and function; an interactive consumer website is under development; and a SAMHSA-sponsored manual on peer support programs nears completion. Recommendations regarding the New Freedom Commission report and transformation of the mental health system await congressional approval of the 2005 budget.

Publications. Recent publications include “Building Bridges,” a report on CMHS’s faith-based dialogue meeting, and “Moving from Coercion to Collaboration in Mental Health Services.” Mikiko Stebbings of CMHS noted completion of Inside/Outside, a consumer-produced video to support Olmstead coordinators in integrating persons with disabilities into communities, and described dissemination plans.

CMHS Report on Information Technology Activities. Ron Manderscheid, Ph.D., Chief, Survey and Analysis Branch, Division of State and Community Systems Development, CMHS, noted that the New Freedom Commission report and “From Policy to Service: A Quality Vision for Behavioral Health,” an executive summary of the Institute of Medicine’s (IOM) report Crossing the Quality Chasm, are available from SAMHSA at mentalhealth.samhsa.gov. “From Policy to Service” presents strategies to achieve the Commission’s recommendations on financing, human resources, and implementation of evidence-based practices and information technology (IT). Building comprehensive community care requires incorporating individualized recovery plans (IRPs) into state systems, with which IT can help.

CMHS, Center for Substance Abuse Prevention, National Institute on Drug Abuse, National Institute on Alcohol Abuse and Alcoholism, Department of Veterans Affairs (VA), Cigna, Robert Wood Johnson Foundation, and Annie B. Casey Foundation are developing a blueprint for change for behavioral health care. Testimony has been heard on self-determination, and more testimony on other topics are planned. The collaborative will issue recommendations on consumer and family-friendly services and systems. Dr. Manderscheid urged the Subcommittee to present key recommendations for action. Mr. Risser observed that the Subcommittee needs mechanisms to gather input.

Dr. Manderscheid explained that IT offers opportunities for data, analytical, and service applications. The Commission and IOM have endorsed the use of IT. IT can help transform financing mechanisms by testing vouchers for self-determination, improving efficiency or eliminating the payment process, and establishing personal independence accounts that permit consumers to use debit cards to pay for services.

CMHS is reinventing its client/patient sample survey, which reports on socio-demographic and problem characteristics, functioning, and quality of life of people who receive mental health services. Dr. Manderscheid encouraged Subcommittee input on information that a new survey should seek, noting also that a consumer survey will be designed. He pointed to the recently released Survey of Consumer-Operated Services and Support Groups, which estimated that 7,500-plus entities currently operate nationwide. He suggested as one possibility to recommend conducting a universe-based survey.

Dr. Manderscheid noted that considerable IT activity related to data is taking place at the Department of Health and Human Services (HHS) and elsewhere. A National Health Information Infrastructure, a conceptual new Internet devoted totally to health, is under development. This project is expected to benefit service delivery in rural and frontier areas by using electronic health records, which would bring together all pieces of a person’s health care and personal health records, which would appear as consumer-friendly websites that compile personal health information, contacts, and information needed to negotiate service systems. This infrastructure would permit sampling continuous data rather than periodic piecemeal surveys. Decision Support 2000+ is part of an effort to develop universal, comparable data to measure the same concepts. Data standards must be HIPAA-compliant and incorporate consumer-friendly data, such as outcomes and system performance. Dr. Manderscheid explained that a work group is defining what outcomes should be measured. Future survey data will constitute the next-generation report card. A new survey will gather information for children and parents.

Discussion. Ms. Johnson questioned whether a majority of consumers served on every committee and on other project activities. Dr. Manderscheid replied that only the group on child and family issues has equal representation of consumers, and that he welcomed Subcommittee help to improve the ratio on other work groups. Ms. Johnson stated that outcomes must be defined by consumers and questioned what steps must be taken to secure participation of a majority of consumers in the project to avoid work groups’ products being suspect and unable to achieve the goal. To Dr. Manderscheid’s comment that a major barrier is resources, she replied that the issue appears to be allocation of resources. She cautioned that an apparent lack of priority placed on consumer participation leads to the conclusion that that consumer input is not sufficient for the purpose. Dr. Caras echoed Ms. Johnson’s concerns, asserting that consumers belong in every setting to ensure that their perspective is heard. She urged a paradigm shift to include greater integration of diverse perspectives, at the same time acknowledging Dr. Manderscheid’s ongoing support for attention to the consumer perspective. Dr. Manderscheid suggested that the Subcommittee serve as an advisory body for Decision Support 2000+. Dr. Manderscheid urged the Subcommittee to recommend to CMHS and Council how to move, in line with the New Freedom Commission and IOM, to bring more consumers into the process. Mr. Brock suggested that Decision Support 2000+ seek input from regional consumer meetings. Mr. Risser asserted that consumers must celebrate invitations to sit at the table, but the table must then be “our” table, because “without us, there is no table.” Dr. Manderscheid expressed support for Subcommittee members’ expressed views.

Dr. Manderscheid reported that CMHS plans to award a new contract to establish and maintain a consumer-friendly, consumer-operated website that will enable chat groups, dissemination of information, and the capacity to evaluate local services. Specific sites would be customized locally by consumers to house their electronic health records. Links must be established between the records and websites to allow people to control their own health record, and the local health information infrastructure must be connected. Dr. Manderscheid urged rapid Subcommittee input on how to proceed and to play a strong role with the contract. The goal is to have this tool in the public domain, to be managed, controlled, and updated by consumers. Another IT effort relates to information sharing and communication. The National Institute for Mental Health (NIMH) plans to issue grants regarding the role of IT in care (for example, telemedicine).

Discussion. Mr. Fricks suggested that input from New York’s consumer movement be elicited regarding recovery-oriented, consumer-friendly data standards. Mr. Marshall will distribute a copy of its white paper to Subcommittee members. Mr. Risser observed the great advantage of IT to serve rural areas and to connect consumer/survivors. Dr. Manderscheid remarked that Epson and Microsoft offer resources to improve interconnectivity and offered to work with the Subcommittee to move that agenda. Ms. Stockdale volunteered to participate in the work on consumer surveys. Dr. Manderscheid will provide additional information to Subcommittee members on the new website contract.

Public Comment. Randy Bosin, advocate, described flaws and inherent dangers in the Ticket to Work and other work-incentive programs. Since the advent of the Americans with Disabilities Act, the percentage of people working has not increased. In discussion, Mr. Fricks pointed out that there is no provision for Medicaid coverage to continue when an individual works. Mr. Brock recommended that the Subcommittee consider this issue. Mr. Fricks pointed out that good supported employment requires person-centered planning, matched jobs, and wraparound services. Vocational rehabilitation must offer an adequate level of support and buy-in, and up-front person-centered planning services. Mr. Bosin suggested trial work periods that accommodate consumers’ sometimes uneven process of recovery. Mr. Fricks noted that persons with mental illnesses have the highest rate of unemployment in the country, but that symptoms often diminish with meaningful employment and friendships. Peer supporter Mary Ann Beall stated that Virginia consumers consider meaningful, career-oriented employment to be their first priority. Mr. Risser suggested that reform of Social Security provisions might permit persons who use mental health services to bank the hours they spend in volunteer community service activities toward work of their choice without benefits reduction.

SAMHSA Priorities Matrix Report: Trauma and Violence
Seth Hassett, Chief, Emergency Mental Health and Traumatic Stress Services Branch, Division of Prevention, Traumatic Stress, and Special Programs, CMHS, described SAMHSA’s emergency mental health and traumatic stress services. These programs include the FEMA Crisis Counseling Program, Public Safety Workers Grants, National Child Traumatic Stress Initiative, SAMHSA Emergency Capacity Grants, the SAMHSA Disaster Technical Assistance Center, refugee programs, and interagency agreements. With FEMA, CMHS offers grants for immediate services and regular services following presidential declarations of disaster. He described the phases of disaster that reflect the emotional highs and lows of a community in recovery from disaster and the approach taken in crisis counseling under the FEMA model, which focuses on outreach, assessment of coping skills, accepting content at face value, and validating responses (such as sleep disturbances) as normal. The FEMA program hires local people who know their community and its dynamics. Funding for the major programs established after September 11th in New York, New Jersey, and Northern Virginia eclipsed all previous funding. When a program is labeled “mental health,” typically people do not engage; if positive labels are used, people get the message that the program relates to mental health and helping the community recover.

Discussion. Mr. Fricks suggested training peers for work in the context of trauma, noting that the Wellness Recovery Action Plan (WRAP) might work well. Mr. Hassett responded that in many cases outreach has used the services of peers and consumer organizations. Mr. Fricks suggested formalizing inclusion of peer services in this program’s budget. Mr. Risser observed that veterans might be useful in supporting individuals with PTSD. Ms. Johnson cautioned that people with psychiatric disabilities can be retraumatized by disasters, but Mr. Hassett observed that people in the mental health system also have shown strength in drawing from their own experiences. He added that the model includes special training for peer support and that the partnership with the VA is extensive.

Mr. Hassett explained that a congressionally mandated recovery support program following September 11 focuses on public safety workers, such as construction workers, who lack organizational supports. Thirty-five states have received limited funds under state capacity grants to incorporate mental health and behavioral health concerns in security/preparedness plans. SAMHSA’s technical assistance to states includes publications, training materials, and other guidance on cultural competence and peer outreach. Mr. Hassett asserted that the challenge is to establish a mental health/substance abuse presence to help coordinate state emergency management plans and statutes for a variety of situations.

CMHS’s National Child Traumatic Stress Initiative aims to raise the standard of care and improve access to services for children, their families, and communities nationwide that have experienced a broad range of disasters and trauma. The National Center for Child Traumatic Stress, with headquarters at UCLA and Duke, is supported by a group of grantees called Intervention Development and Evaluation Centers, which deal with such issues as homelessness, substance abuse and mental health issues in trauma, physical and sexual abuse, and medical trauma. The initiative is expected to contribute to systems transformation. CMHS partners in trauma include FEMA, Department of Justice (DOJ), VA’s National Center on PTSD, Department of Education (DOE), National Transportation Safety Board, Centers for Disease Control and Prevention, and NIMH. CMHS recognizes the potential danger of “outsiders” contributing to trauma and aims to avoid pathologizing individuals’ responses.

Susan Salasin, Public Health Advisor, Division of Service and Systems Improvement, CMHS, described SAMHSA’s 1998-2003 study on women with histories of physical and sexual abuse and co-occurring mental health and substance abuse disorders. Until recently trauma as a cause of mental health problems was not discussed. At an early 1990s meeting that focused on women with a history of abuse, participants talked about their experiences with re-victimization in institutions, seclusion and restraint, and traumatic triggers within institutions. In this Women and Violence Study, grantees spent two years designing a multisite, community-level program to serve women with “borderline” diagnoses who had experienced violence, and then implemented and evaluated outcomes of the three-year program. Evaluation showed that the comprehensive program design that focused on empowerment, provided gender-specific services, and was trauma informed and trauma specific worked better than treatment as usual. Consumer involvement was essential in the comparison-group design. Working through philosophical conflicts in program design and other issues over the first two years was difficult and disruptive, as participants merged differing views of trauma and mental/behavioral health, but the decisions held through the duration of the program. Program participants included 2,700 women, median age 35.8 years, half of whom had not completed high school. The women had had limited access to health care, lived in unstable situations, and were highly symptomatic. A strong psycho-education component in the empowerment model enabled women to work out their own health issues.

The women in the experimental group fared much better, particularly in their level of trauma and mental health symptoms. Drug and substance abuse also stabilized, but to a lesser degree. For this first KDA program with positive findings, 75 articles now are in process. Consumers participated in every aspect of the project. SAMHSA plans to disseminate the study broadly to the field, helped in part by five organizations that will develop materials to distribute to their own constituencies. A public education campaign is planned for fall 2004. SAMHSA will fund the Women’s Trauma Services Center for four years, and a large Baltimore conference in December 2004 is anticipated to demonstrate program models.

Jacki McKinney, Director, Trauma Knowledge Utilization Project, described the study from the perspective of one of the four consumer/survivors who participated in project planning. The project goal was established to inform and mobilize thousands of women about trauma and to encourage them to join the consumer movement. At the end of the study, 30 percent of the consumers involved wanted to engage in paid peer specialist work, and 20 percent wanted to earn a degree and become a leader. The remaining 50 percent wanted to learn and then engage in project management, focusing on diversity and on bringing other consumers through the trauma door. Ms. McKinney noted that most did not want to do paperwork.

Ms. McKinney stated the need for education, training, and certification, asserting that lived experience is a critical component for trauma-informed consumers. A key feature of the study was that the professionals moved back from the table and listened to the consumers. The planners realized early that many professional women also had experienced trauma. Ms. McKinney explained the need for a benefits coordinator to help consumers work and continue to get assistance, to provide training to consumers about research methodologies, and to provide consumers with staff and a budget.

Discussion. Mr. Brock urged that this study inform self-determination initiatives to develop funding streams to enable consumers to choose peer services that compete with traditional providers. Ms. Stockdale and Mr. Fricks expressed support for a Subcommittee resolution related to work in trauma. Mr. Hassett explained that FEMA funding is situation based and that the child trauma initiative is funded at $30 million annually. Mr. Fricks suggested allocating 10 percent of the funds allocated for trauma support for training peers to provide trauma services. Mr. Risser cautioned about the concerns of universal screening for children for mental health situations. Ms. Johnson concurred in the importance of a focus on trauma and of the role in children of economic and nutritional deprivation. She also pointed out that mental health professionals often complete their schooling without having met the people they hope to help. In the Women and Violence study, attention to the process and flexibility permitted professionals to build partnerships with their consumer colleagues, as well as foster empowerment among the women themselves.

CMS Report on Medicaid and Consumer Direction
Peggy Clark, M.S.W., M.P.A., Technical Director, Disabled and Elderly Health Program Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services, stated thatCMS acknowledges the New Freedom Commission’s goals to enable people with disabilities. As the single largest source of public funding, Medicaid assists states in providing access to mental health care. CMS plans to work with SAMHSA to review and consider action on Commission recommendations. As a payer accountable for public funds, CMS believes that financing of health care should be related to services with demonstrated effectiveness and that are responsive to the needs and preferences of beneficiaries. Ms. Clark noted that SAMHSA’s new toolkits are a subset of effective practices and that the basic Medicaid plan consists of 30 categories of activities for which Medicaid provides matching funds. State Medicaid plan amendments must comply with state laws and regulations and provide medically necessary, evidence-based services to Medicaid eligibles; offer free choice of qualified providers and adequacy of amount, duration, and scope of services; comparability of services; third-party liability; reimbursement methodologies; and a comprehensive description of payment method.

CMS contracted a state study of evidence-based practices in the SAMHSA toolkits for adults and multisystemic therapy (MST) for children and adolescents, as examples. Lessons learned included educating Medicaid staff about evidence-based practices, interagency collaboration between mental health and Medicaid agencies, community partnerships of stakeholders in states, and evaluating outcomes. Ms. Clark asserted that Medicaid wants to pay for what works and wants to see documentation.

CMS issued in 2004 a Real Choice System Change grant solicitation for proposals to build states’ capacity to deliver evidence-based and recovery-oriented services to Medicaid recipients with mental health needs. Consumers participated in a review of the applications. Examples of recovery orientations supported by CMS include peer supports, self-direction, and consumer-owned and -operated services and supports. Ms. Clark noted that the fall 2004 issue of CMS Health Care Financing Review focused on mental health issues. She stated that CMS wants to improve the quality, effectiveness, and efficiency of Medicaid programs by promoting evidence-based practices in the delivery of Medicaid mental health and substance abuse services. CMS is committed to facilitate access to a comprehensive, continually improving, community-based system of services intended to achieve meaningful personal and public outcomes.

Discussion. Ms. Clark noted that CMS cares about balancing science and practice and that consumers and researchers concur in the effectiveness of evidence-based practices. If CMS directs funding streams to alternative providers, state statutes will guide the process. CMS considers certification and training to be important, and the agency may review programs to ensure their quality. Ms. Clark supported Mr. Brock’s suggestion that CMS provide tools to help interested parties grapple with the issues. Consumer organizations that work with states would benefit from CMS-provided technical assistance. Ms. Clark stated that CMS’s regional offices are attuned to regional needs. Mr. Fricks suggested that CMS’s advisory board include people recovering from mental illnesses in proportion to the number of persons who receive mental health benefits, noting that despite CMS’s regional focus, policy must be approved at the federal level and that it is important to educate CMS staff about strength-based recovery. Ms. Johnson noted disparities among regions and suggested that CMS issue an advisory letter to state Medicaid directors stating that peer services are integral to their needs. Mr. Fricks concurred on the importance of all regions understanding that under certain guidelines, peer support is a billable service. Ms. Johnson suggested that CMS provide training to regions and establish a dialogue on the issue of self-direction. Mr. Terrell pointed out the route by which national policy reaches regions, and Ms. Clark noted that a training module will be developed for CMS regions and states; Ms. Johnson and Mr. Fricks urged consumer input at all points in its development.

 Shawn Terrell, Center for Medicaid and State Operations, CMS, discussed self-determination in the context of fragmented, often inadequate, mental health services system. He asserted that Medicaid may be a part of the solution under self-determination, the philosophy that every individual should have effective options to live a full, meaningful, and productive life according to his or her values. Mr. Terrell defined recovery as a process whereby people can gain a sense of hope, meaning, and purpose in life despite setbacks caused by mental illnesses and its consequences. CMS defines self-direction as a program that presents individuals with the option to control and direct Medicaid funds identified in an individual budget, and in which the participants live in their own homes. Self-direction helps create conditions for self-determination, and recovery outlines some of the factors characteristic of a self-determined life. With proper supports, CMS believes, everyone can self-direct, recover, and live a self-determined life. Self-direction features include person-centered planning, individual budgeting, self-directed supports, and quality management.

Discussion. Mr. Risser pointed out that not everyone has setbacks or suffers, and that recovery relates more to becoming a full participant in the community than reduction of symptoms. Ms. Johnson stated that recovery relates not only to the treatment process, but also to identifying and making available supports in the community.Mr. Terrell stated that CMS will engage states in discussions on the role of forced treatment in the context of self-determination and noted that Florida’s data is promising. On the issue of pets as support, Mr. Terrell acknowledged that state plans have many limitations. While CMS does not judge the value of supports, it looks for effectiveness data. Subcommittee members urged CMS to clarify its evolving policies. Mr. Fricks noted the importance of funding peer services through a fiscal intermediary, not Medicaid.

Mr. Terrell discussed factors that foster transition to self-direction: People may be reluctant to take on an individual budget right away; consumer-owned and -operated services and supports may help create a culture of ownership and empowerment; and no prohibitions exist on consumer-owned organizations contracting directly with service providers. CMS embraces empowerment, supports, and alternatives to traditional services; consumer organizations can become managed care organizations. Medicaid must help dependent people get out of poverty, and buy-in allows persons to pay a premium to continue Medicaid benefits when income exceeds eligibility limits. Twenty-nine states have such programs. CMS’s recovery model and self-determination plan begins with people dependent on Medicaid and SSI for most needs, provision of a full range of options through self-direction and Medicaid services, leading to Medicaid buy-in and individual development accounts to help people out of poverty without losing their benefits. Subcommittee members identified the need for benefits coordinators. Mr. Terrell pointed out that consumers participate in weekly meetings of CMS’s self-direction task force and its cross-cutting mental health team (website, www.cms.hhs.gov).

The meeting recessed at 5:00 p.m. and Subcommittee members reconvened at 9:00 a.m. the following day.

Individual Recovery Plans
Neal Adams, M.D., M.P.H., Medical Director for Adult Services, California Department of Mental Health, discussed the role of individual treatment/recovery/service plans (ISPs/IRPs) in person-centered treatment planning, a highly individualized, comprehensive approach to assessment and services used to understand each individual’s and family’s history, strengths, needs, and vision of their own recovery, including attention to the issues of culture, spirituality, trauma, and other factors. He stated that most providers do not understand the person-centered approach, noting that the experiential piece is important in training on the issues, problems, and needs consumers present to providers. Service planning typically is a provider-driven process with little if any consumer input, but for many people, successful recovery benefits from planning and clarity about the intended process and awareness of problems and pitfalls. Consumers view systems’ traditional planning process as keeping people dependent.

Recommendation 2.1 of the New Freedom Commission’s report calls for providers to develop customized plans in full partnership with consumers, with consumers playing a role integral to the planning team as part of transformation to a recovery-oriented system. Change depends on attending to the work force in numbers and training on skills, competencies, and attitudes. Individuals and family members are members of the treatment team who participate actively in service planning; ISPs must include discharge/transition criteria tied to personal recovery goals. Services focus on skill development, and assessments and plans are strengths based and culturally competent. When reviewed frequently, ISPs promote progress. In reality the treatment plan often is a devalued administrative requirement, is not clinically relevant, does not involve consumer/family participation, reflects providers’ concern and goals, does not support recovery, is not individualized, is not built on strengths, and is not culturally sensitive or appropriate. Dr. Adams observed that little or no evidence exists that ISPs make a difference, but as they are used and studied opportunities will arise to understand them better and determine the best model.

Current outcome systems cannot accommodate the need to achieve education, employment, and housing. ISPs identify the responsibilities of team members and the roles of the person served and family in recovery. Planning is not an evidence-based practice, and it will be important to link evidence-based practices with the concept and process of person-centered care. Dr. Adams explained that mapping is necessary to link assessment to a detailed ISP, to identify barriers to address and resolve, and to move through objectives to get to goals. Strategies include workforce education and competency-based training, evidence-based research on effective methods, financing and dedicated resources, and IT. Consumer and family education can create demand for person-centered planning. Consumers can refuse, for example, to sign the planning form if participation has not been to his or her satisfaction. Transformation depends on education, training, and preparation of families and consumers on how to participate actively in the planning process and recovery. In California, in addition to working on toolkits and evidence-based practices, there is a focus on technical knowledge and a cognitive component that includes both didactic and experiential, practical training. An orderly process of change requires knowing where individuals and the system want to go, a coherent project management approach, and a change management process.

 Glenn Hopkins, Executive Director, The Main Place, Inc., described his organization’s individual planning process to empower consumers. In Ohio consumer-operated service organizations have representation on the state’s steering committee, and some budgets reflect 20 percent of county funding to provide services that often compete with traditional agencies—an indication of system change. In the early 1990s, Ohio began its move to a recovery orientation when consumers, administrators, and providers met to discuss best practices. A steering committee was constituted, a consumer designed a systems-change project, and technical assistance contactors developed tools for emerging best practices and provided support for consumer-operated services. Evidence shows that more than 50 percent of consumers with severe mental illness emerging from psychiatric hospitals have been able to recover.

Mr. Hopkins stated that recovery depends on ongoing consumer input, IRPs, mental health system recognition of its tendency to promote dependency, fostering hope, life roles defined in terms of work and meaningful activities, consideration of spirituality, culture understood, educational and social needs identified and accommodated, individual differences considered across the life span, holistic approach, best practices used, use of strengths/assets model, and collaborative development of recovery management plans that focus on interventions that facilitate recovery and resources that support process. Ohio’s experience finds that family involvement may enhance recovery and that mental health services provided in the consumer’s community are most effective.

Steps to facilitate consumer recovery may include interactive consumer/clinician discussions about the components of recovery, identification of progress in recovery, and ongoing evaluation of progress. When consumers see progress in their recovery, recovery progresses better. A database has been compiled that describes level and stage of recovery, actual goal, when achieved, and next goal. Goals are tracked one at a time and action steps are adjusted to reflect goals. Community-based planning requires clinicians and peer supporters to involve the consumer’s community. Consumers and clinicians define a recovery management plan that can include approaches to clinical care, peer support and relationships, family support, work/meaningful activity, empowerment to control one’s life, stigma, community involvement, access to resources, and education. Mr. Hopkins described the recovery planning book and other activities his organization undertakes to help consumers move toward recovery. Activities include clinician training and supervision, and consumer meetings about their recovery process. Convincing service providers to accept clients’ goals and then to facilitate clients’ plans has been a major change. Case levels were reduced to permit time to support consumer and clinicians throughout the process. Ohio’s Department of Mental Health and communities have shown important support for the success of the recovery focus.

Eugene Johnson, CISW, President and CEO, META Services, Inc., presented a video in which consumers tell stories of recovery. He asserted that once one accepts the value that recovery is possible, it changes everything. META has developed a simple recovery planning document to help consumers focus on their goals, hopes, and dreams. Case managers typically do not like the process at first, but they come to understand that the person is an expert and can make choices and decisions. The value of the planning process is whether it helps persons understand their dreams, experience hope, and build relationships.

Mr. Johnson used the analogy of service in a restaurant to describe the typical service plan: If a consumer wants bacon and eggs but is served potatoes and gravy, because “we talked it over in the kitchen, and what you really need is potatoes and gravy,” that is not service. Service plans exist for consumers to tell providers what to do. META’s goal-setting process focuses on identifying “things I’d like to show up in my life,” and the plan serves as way to check progress. Hope, choice, and empowerment are critical elements. META’s clients have reduced rehospitalization by 56 percent. Important components of recovery are helping others, which promotes meaning, purpose, and increased self-esteem, and consumers identifying supports they believe will help them. In orientation sessions, peer staff tell their recovery stories and invite consumers to fill out planning guides. Case managers transform the information into a formal service plan document that offers guidance to professionals about what individuals want.

Discussion. Mr. Brock and Ms. Johnson questioned how to encourage funders to shift their thinking. Ms. Johnson observed the powerful presence of peers as living demonstrations of hope and a stepwise process to recovery. Mr. Risser suggested shifting the terminology from “person centered” to “person directed.” Dr. Adams explained that accountability is attached to funding; currently providers are held accountable, but self-directed funding and other innovations will enable a move to “person directed.” Mr. Thompson observed the importance of the presence of sufficient consumers at decision tables to tell their stories. Ms. Stockdale noted that Tennessee supports a focus on individual recovery. Mr. Brock stated that the Annapolis Coalition links mental health administrators and teachers in the behavioral sciences to work to revamp curricula for mental health professionals; he suggested that the group encourage development of lines of research related to consumers. Dr. Adams stated that the Annapolis Coalition addresses consumer/survivors in the workforce, provision of employment supports for consumers, and the importance of including family and consumes in faculty and curricula.

SAMHSA Priorities Matrix Reports: Strategic Prevention Activities
Promoting Mental Health and Preventing Mental and Behavioral Disorders. Anne Mathews-Younes, Ed.D., Director, Division of Prevention, Traumatic Stress, and Special Programs, CMHS, stated that CMHS’s vision has included prevention of mental illnesses from the start. Research has mounted over the years, and the New Freedom Commission report has validated the agency’s deep interest in the subject. She described several CMHS prevention projects: The congressionally mandated Safe Schools/Healthy Students Program is an unprecedented collaboration of HHS, DOE, and DOJ implemented after the 1998-99 school shootings. A comprehensive public health program, the project incorporates such key mental health objectives as resilience and early childhood development. Since 1999, total federal funding has amounted to almost $1 billion. A smaller grant program for community-based organizations, the Youth Violence Prevention Program, also began in 1999. A body of literature now exists on what works to prevent youth violence and promote mental health.

Nancy Davis, Ed.D., Public Health Advisor, Center for Mental Health Services, stated that stigma attached to mental illness had led people to believe that prevention of mental illnesses was not possible, and hard evidence to the contrary was scarce. Interest in prevention has waxed and waned over the years, and people have assumed a false dichotomy between prevention and promotion because of limited funding resources. Dr. Davis asserted that comprehensive mental health programs must link prevention, promotion, and treatment and recovery services along a continuum of services that need funding. The Surgeon General’s 1999 report stated that “mental health and mental illnesses are not polar opposites but may be thought of as points on a continuum” on which lie a range of stress factors. A variety of interventions may be appropriate for particular points on the continuum. A 1994 IOM report on prevention science stressed risk and protective factors and evidence-based programs that prevent or delay onset of various mental disorders. CMHS activities fit better with NIMH’s definition of prevention, which includes prevention of initial onset, comorbidity, disability, and relapse. Risk and protective factors exist at the individual, family, and community levels, and preventive interventions can occur on any level. In 2001 CMHS received funds to develop its Prevention and Early Intervention grant program, in which most grantees address infants and toddlers or preschoolers; research shows that starting early is starting smart.

Dr. Davis stated that CMHS’s prevention targets include conduct disorders and some forms of depression. The costs of crime are high to victims and taxpayers, and a number of prevention programs that target conduct disorders have attractive economic bottom lines. Cost-benefit analyses are positive, for example, for the Nurse-Family Partnership program in which well-trained nurses visit homes of young pregnant women at risk for preterm and high-risk babies and continue their visits, promoting nutrition, prenatal care, and parenting, until the child reaches age two. The program pays for itself before the child is age four. In crime reduction alone, for every $1.00 invested taxpayers save $3.06. Other programs also offer good return on investment, including Big Brothers Big Sisters. Other cost savings relate to mental health and substance abuse treatment, plus the bonus of added productivity.

Dr. Mathews-Younes described the National Registry of Effective Programs and Practices (NREPP), now expanding to incorporate interventions on PTSD, violence prevention, and mental health promotion. CMHS’s communications/social marketing campaign reflects the belief that relationships matter. 15+: Make Time to Listen/Take Time to Talk asserts that parents need to listen actively to their children. The 2004 campaign has focused on anti-bullying, and other prevention activities include suicide prevention, training for primary care staff in rural areas, and conferences on prevention and promotion.

SAMHSA’s Strategic Prevention Framework.Mike Lowther, Director, Division of State and Community Systems Development, Center for Substance Abuse Prevention, explained that because common risk and preventive factors are present for mental health and substance abuse problems, the Strategic Prevention Framework (SPF) crosses SAMHSA’s centers. The SPF supports accountability, capacity, and effectiveness in communities to create change. SPF components are assessment, capacity, planning, implementation, and evaluation. Two additional critical pieces to ensure program effectiveness are sustainability and cultural competence. SAMHSA has established SPF state incentive grants to implement this framework. Grants are to be awarded in September 2004 for up to $3 million per state to enable community coalitions to devise a framework to address local problems. Grants will be used to teach states to do the entire process; the federal government will withdraw from mandating actions, but will require states to create a plan and hold themselves accountable. States’ frameworks will help them focus on substance abuse and mental health problems, with decision making based on real statistics that will facilitate policy, programs, and practices that matter. States will undergo a policy shift to facilitate recovery and create access to consumer-directed services.

Discussion. Dr. Davis stated that fewer prevention programs exist for adults than for children. She suggested that adult consumer/survivors might participate in the prevention movement by calling on the mental health system to broaden its vision of mental health and mental illnesses and the premise of whom the system is designed to help. No one wants to reallocate treatment funds for people with significant illnesses, but it is important to intervene where possible to help people avoid being affected. She welcomed input on how to enlist consumers and peer supporters in prevention work. Mr. Risser pointed out that prevention of child abuse will prevent youth from becoming victims as well as perpetrators. Dr. Mathews-Younes stated that CMHS has leveraged the Safe Schools/Healthy Students program to pay close attention to victims no matter what their age. The anti-bullying campaign and the Prevention and Early Intervention program also relate to parents. The prevention-minded treatment offered at Tamar’s Children in Baltimore, a jail diversion program for pregnant women, includes good prenatal care for women with criminal justice, substance abuse, trauma, and mental health problems in order to help the women and prevent problems in their children. Mr. Lowther explained that SAMHSA awards SPF grants to state governors and requires advisory boards composed of state agencies, community groups, and other partners and stakeholders, including consumer groups. He urged consumers to talk to their governors in a systematic way and urge appointment of consumers to advisory boards.

Public Comment
Lisa Goodale, Peer-to-Peer Resource Center, encouraged the Subcommittee to educate the National Advisory Council on ISPs. She explained that the technical assistance center focuses on peer support and recovery, advancing the concept of peer support specialists to be part of each person’s recovery team. The center has developed a model curriculum, conducted a pilot training program, and currently is revising the curriculum. Upon CMHS approval, the curriculum will be distributed.

Kathy Muscari, Consumer Organization and Networking Technical Assistance Center (CONTAC), described recent activities, including presenting recovery as a priority and program management and workforce training and development. CONTAC presents trainings, including leadership academies, and convenes stakeholders to learn and share on a variety of issues, including WRAP implementation and successful peer programs. A video and literature are in preparation. CONTAC collaborates with other peer technical assistance centers on common interests and also brings together diverse groups. CONTAC helped West Virginia’s peer specialist program get underway, and, with NAMI’s STAR Center, will offer leadership training for consumers who are deaf.

Tom Liebfried, National Mental Health Consumer’ Self-Help Clearinghouse, stated that the clearinghouse currently is planning the Alternatives Conference using a field-driven process that includes participation from other technical assistance centers and 17 additional consumer/survivor leaders around country. The clearinghouse also is revamping its newsletter, planning to produce more focused quarterly technical assistance reports, providing customized technical assistance, and serving as “cross-pollinators” by facilitating and brokering relationships between programs to create technical assistance.

Sara Thompson, National Consumer Supporter Technical Assistance Center, stated that the center historically has worked with consumer organizations to increase communities’ capacity to provide culturally competent services. This year they have made grants available for consumer-run organizations to establish their own 501(c)(3) status. To facilitate SAMHSA’s transformation work with states, the center is working to identify factors and trends in mental health systems in particular communities—such as funding, grassroots advocacy, and/or a charismatic leader—that have led to transformation of their systems.

Randy Bosin, advocate , pointed out difficulties in using individual development accounts in Medicaid to circumvent unrealistically low asset limits. He acknowledged that useful information appears on the CMS website, but noted limitations on applicability. He asserted the need for federal consolidation of services. Mr. Marshall stated that HHS’s Office of Disability centralizes information on disabilities and offers an extensive website. Mr. Fricks stated that Georgia has engaged benefits navigators for the Ticket to Work Program to help publicize and implement work incentives.

NAC Agenda and Recommendations
Members of the CMHS National Advisory Council on Consumer/Survivor Issues discussed the importance of self-determination, noting that state planning councils, state incentive grants, and state block grants are possible sources of flexible funds to pay for services, and that state personnel should be made aware of these possibilities. Mr. Brock cautioned that mental health consumer/survivors must be incorporated into self-determination plans for people with disabilities. He also suggested that there be internal staff education program on the recovery and self-determination model.

Dr. Caras suggested that since the Subcommittee has no youth members, it should refrain from formulating recommendations regarding youth. Members expressed concern about medicating children and the current discussion on screening. Mr. Risser stated that universal assessment of mental disorders should be a last step, not the first, in helping children. Family education and provision of social supports are important first interventions, particularly in cases where abuse and trauma have precipitated mental health problems. Members cautioned against pathologizing abuse and trauma, which can result in more discrimination.

Mr. Brock suggested that Subcommittee members participate in CMHS’s regional consumer/survivor meetings and familiarize themselves with the meeting reports, and that they support development of regional coalitions. Ms. Stockdale noted that CMHS funding would be helpful for members to attend meetings. Ms. Johnson suggested developing a publicity plan for the meetings and their findings.

Noting that Goal 2 and Recommendation 2.3 of the President’s New Freedom Commission on Mental Health report state that individuals “must be able to exercise choice, self-direction, and control over their health care services” through the aligning of federal financing for health care, the Subcommittee voted to recommend that the Council advise CMHS to increase funding in programs such as the Mental Health Block Grant and State Incentive Grants for consumer-operated, culturally competent national and regional education and support for community-based self-directed services, person-centered planning, and individualized budgeting. In addition, Goal 2 and Recommendation 2.2 encourage consumer-run services and peer support. The Subcommittee recommended that funding from existing and future CMHS-operated trauma and prevention services support workforce development of peers trained and employed to provide trauma-specific services and supports. Finally, the Subcommittee recommended that the Council urge CMHS to be clear that a focus on trauma includes abuse—physical and sexual abuse, especially including early childhood sexual abuse, and neglect. Furthermore, as a means of prevention prior to screening, assessment, and treatment in youth and adults, CMHS should work with other federal agencies to provide education and social supports on issues such as poverty, nutrition, and the environment for individuals who have experienced trauma and abuse.

Evaluation, Next Steps, and Closing
Mr. Risser urged updating the Subcommittee website and adding an interactive capability to facilitate communications with consumers around the country. Mr. Fricks concurred, stating the important role of technology to enable the Subcommittee to serve as a conduit for transformation. Dr. Caras described her efforts during her tenure on the Subcommittee to maximize the clout of the new position of director of consumer affairs (the first and present incumbent is Paolo del Vecchio) by establishing a career ladder for the position; to secure payment for consumer service on the Subcommittee; and to introduce “discrimination” into the dialogue on stigma. Mr. Brock stated that the consumer/survivor movement must develop within itself an alternative set of consumer providers who cooperate and compete with traditional providers. Certification and accreditation will be necessary, as will creating funding streams for alternative providers that consumers can choose. He urged creation of a national consumer/survivor organization, with development of regional technical assistance centers to foster regional coalitions as a first step. Ms. Stockdale and Mr. Brock suggested as future agenda items a discussion of children with ADD who are diagnosed incorrectly and medicated, and a report about pharmaceutical companies regarding adverse reactions. Consumer advocate Yvonne Smith pointed out that pharmaceutical companies might pose a barrier to a focus on recovery. Mr. Risser urged using people-first language, specifically “people who receive or have received mental health services, ” and dropping the term “consumer”—and using the term “discrimination.” Mr. Brock suggested that the Subcommittee meet at the Alternatives Conference and other venues where large groups of consumers are present.

Adjournment. Mr. Fricks adjourned the meeting at 2:55 p.m.