Vol. 2 Issue 2 Community Living Briefs ILRU Exchange Community Living Briefs A publication of the Community Living Exchange Collaborative at ILRU. "Community Living Briefs" is a resource for Real Choice Systems Change Grants for Community Living grantees and their stakeholders, which provides practical tools and strategies to facilitate the full integration of people with disabilities into the mainstream community. Consumer/Survivor-Operated Mental Health Services Deborah Potter, MA, PhD candidate Virginia Mulkern, Ph.D. Human Services Research Institute INTRODUCTION As states struggle with finding efficient and effective ways of meeting the mental health needs of their citizens, one option is to fund a variety of "consumer-operated programs" or mental health programs run by and for other consumers. While there are many ways of talking about and defining consumers/survivors2, the working definition used in this policy brief is "people who receive mental health services." Consumer-operated programs are increasingly recognized as a vital resource by such notable authorities as the U.S. Surgeon General (1999) and, more recently, President Bush's New Freedom Commission on Mental Health which has advocated that "peer support services be integrated into the continuum of community care..." The general philosophy of all peer-delivered services is that those who have "been there" are the best helpers. In addition to the more general values found in many self-help groups (such as non-reliance on professionals, voluntary participation, equality of members, and a non-judgmental atmosphere), consumer/survivor-operated mental health services also embrace the values of hope and recovery. The motto of "nothing about me, without me" resonates within, and the values of choice, empowerment, and self-determination permeate throughout peer-led mental health services, distinguishing them from others. Information on the history of consumer-operated services can be found on the Human Services Research Institute website (www.hsri.org/ILRU/consumeroperatedservices ). Consumer/survivor-operated services vary greatly in format and focus. While drop-in centers may be the most common form of peer-led programs, and self-help groups may come most readily to mind when consumer-operated services are mentioned, many other types of programs now exist and some of the most common are outlined in Table A. TABLE A: Types of Consumer-Operated Services Type of Service Examples Warm Lines West Virginia Mental Health Consumers Association www.contac.org/WVMHCA/services.htm Drop-in Centers On Our Own of Charlottesville avenue.org/onourown/ The St. Louis Empowerment Center www.dbsastlouis.com/center.html Clubhouses International Center for Clubhouse Development www.iccd.org Independent Living programs Independent Living Resource Center of San Francisco www.ilrcsf.org Main Street Housing www.onourownmd.org/msh.htm Peer-led case management The Friends Connection www.mhasp.org/friends/ Crisis support/respite Stepping Stone www.m-power.org/AIrespite.htm Benefits acquisition Georgia's Certified Peer Specialist Program www.gacps.org Technical assistance CONTAC www.contac.org/default.htm Research Recovery Project www.nasmhpd.org/ntac/reports/index.html Anti-stigma programs The Anti-Stigma Project www.onourownmd.org/asp.htm Advocacy and Advocacy Training programs Mental Health Consumer Concerns www.sonic.net/~mhcc The Leadership Academy www.contac.org/WVMHCA TEAM Tool Kit from www.mhselfhelp.org Political Action Groups NARPA www.narpa.org Other allied programs Laurie Mitchell Employment Center in Fairfax, Virginia lmec.org Collaborative Support Programs of New Jersey www.cspnj.com This brief describes some of the evidence behind consumer-operated services and how consumers and state mental health staff can work together to develop and expand such services. It also provides case studies of several successful programs and lists resources where interested individuals can find additional information. THE EVIDENCE BEHIND CONSUMER-OPERATED SERVICES By the late 1980's, despite the proliferation and growing acceptance of peer-delivered services, there was little research which had been done on the effectiveness of consumer/survivor-delivered services. In response, The Center for Mental Health Services (CMHS) funded a multi-site evaluation study of 13 varied programs across the country, beginning in 1988. The 3-year projects produced evidence that peer-led services increased the social skills, decreased inpatient services, and improved the self-confidence of consumers/survivors (Van Tosh and Del Vecchio 2000) . This evaluation demonstrated the potential power of the consumer model. By the late 1990's, a small body of literature had accumulated, much of which was derived from uncontrolled studies, which show positive outcomes related to consumer/survivor-operated services (such as improved symptoms, increased size of social networks, and enhanced quality of life, reported in Davidson et al, 1999). More recent studies have shown that the consumer/survivor staff members provide care as good as or, in some cases, better than non-consumers (e.g. Chinman et al, 2000; Solomon and Draine, 2001). Other peer support programs have demonstrated reductions in hospitalizations (e.g. DBSA, 2002; Klein, Cnaan, and Whitecraft, 1998). Recently, the Consumer-Operated Services Program (COSP), funded by CMHS, has begun to rigorously examine the effectiveness of a wide range of peer programs in order to identify best practices within the field. In addition to the Friends Connection, described below, other best practices are being documented in the COSP initiative and as data analysis continues, the project will likely yield other examples of consumer/survivor-operated programs with demonstrable results. Ë Example: The Friends Connection The Friends Connection (www.mhasp.org/friends/), is a peer-led mobile psychiatric rehabilitation program for those with co-occurring disorders (mental health and substance abuse) and is operated through the Mental Health Association of Southeastern Pennsylvania, a non-profit advocacy, service, and education organization. The program is designed to bridge gaps between the historically separate treatment systems for mental health and substance abuse. Originally funded with community monies when Philadelphia State Hospital (also known as Byberry) closed in 1990, the program now has expanded into surrounding Montgomery County and county-level funding has been added to that supplied by the city of Philadelphia. All participating County service providers may use the Friends Connection. Up until 2004, only those people who are in the state mental health system have access to the Friends Connection through a case manager or Resource Coordinator. The Friends Connection uses a multi-disciplinary team approach to Intensive Case Management (ICM). Consumers are referred from case managers and from other mental health treatment and rehabilitation programs and professionals. After an orientation and assessment, the consumer is matched with a Peer Support Counselor (who has a program supervisor who in turn is supervised by the Clinical Manager). While staff may receive services elsewhere, they do not currently receive services at the Friends Connection. Friends Connection staff must meet position-specific credentialing standards. Peer Counselors act as positive role models and provide one-on-one support to individuals as they work on their individual goals. In developing a personal goal plan, consumers select from among many community-based social, education and leisure activities as well as more traditional 12-step programs. The plan is reviewed every 3 months and is used as a basis to determine the medical necessity for the individual to continue receiving services. The Friends Connection uses a continuous quality improvement model to strive for excellence and exceed the expectations of consumers/survivors using the program. A quality improvement committee, composed of staff and participants, monitor outcomes (including hospitalization, substance use, and consumer satisfaction). Through the COSP initiative, the program has secured research funding in partnership with the University of Pennsylvania and in collaboration with the Philadelphia Office of Mental Health. Participants in the Friends Connection (which uses ICM) are being compared with others who receive only ICM. Results from a pilot study (Klein, Cnaan, and Whitecraft, 1998) suggest that the Friends Connection is effective in making a significant, positive change for participants in several dimensions of quality of life (such as perceived physical and emotional well-being, and financial stability). In addition, those who participated in the Friends Connection required less hospitalization than those who did not participate in the peer program. Many other consumer/survivor-operated programs have not been scientifically demonstrated to be "best practices," yet they have garnered widespread recognition, including community and professional awards, and show potential as exemplary practices. Increasingly, research is also being directed toward these programs to assess whether and to what extent they provide benefit to consumers. PACE is a widely cited model which has been developed by one of the three National Technical Assistance Centers (NTACS), the National Empowerment Center in Lawrence, MA. Ë Example: PACE - An alternative to PACT The National Empowerment Center (NEC) has developed a program, Personalized Assistance in Community Existence (PACE), as a non-coercive alternative to the medicalized illness-based model of Programs in Assertive Community Treatment (PACT). Before designing PACE, NEC conducted research into factors that were most important in enabling people to recover from mental illness. Dr. Dan Fisher and Laurie Ahern (then co-directors of NEC) developed PACE which emphasizes recovery and self-determination. While PACT was designed initially as an alternative to hospitalization, many consumers/survivors including the developers of PACE, believe that it has become focused on compliance with medication, relies on coercion, assumes life-long illness, and has been linked with outpatient commitment. In contrast, PACE is based on an Empowerment Model of Recovery which values "voluntary forms of assistance directed by the individuals themselves" which may or may not include medication. Developing trusting relationships, which permit people to (again) dream and have valued social roles, is at the center of the Empowerment Model. Both Fisher and Ahern have traveled extensively and trained others in the PACE model. NEC has published results (Zahniser and McGuirk, 2002 cited in Campbell and Leaver, 2003) documenting that after the program, 66% of those in PACE report they are more hopeful (either that they will recover or that the person they are helping will.) HOW TO BEGIN THE PROCESS Phase 1: Issues to Consider Before States and Consumers/ Survivors Work Together There are distinct issues for states, as well as consumers/survivors, to consider before offering or applying for funding for peer-led programs. « Issues for consumer/survivors Perhaps the very first issue that consumers/survivors must resolve is whether to accept state funding and other support. In making that decision, consumers/survivors might want to consider the following questions: * Is the grant program consistent with the orientation and goals of the peer-led program? * Is there broad-based support for the particular program AND for state funding? * What changes in basic operations (e.g. hiring, training, certification) might be expected as part of the state program? * What are the reporting requirements and will such requirements conflict with existing policies or procedures? * How ready will staff/volunteers be to accept the new program? Or the new fiduciary relationship with the state? * Finally, what model of state involvement will the program use? Although there are no "right" or "wrong" choices, the choice of model does affect the type of working relationship the program has with the state and vice versa. One model is for the program to be a stand-alone consumer/survivor operated program which receives funding from the state and perhaps to incorporate itself as a nonprofit organization. Another option is for the program to align itself with an existing non-profit organization and receive state funding indirectly, through the partner as fiduciary agent. A third model involves partnering directly with the state. « Issues for states States, too, should consider several issues as they seek to support the development of consumer -operated services. * Which of the programmatic models are they willing to support? Under a consumer-survivor operated model, the control of the programs rests with consumer/survivors and states serve more of a supporting role. Other models in which the state and consumers/survivors act as partners might also fit the state mental health agenda but should be explicitly differentiated from the more strictly defined "consumer/survivor-operated" model. * Next, in choosing among the rather extensive menu of services (such as those outlined in Table A), states might want to weigh the following considerations: * Service Gap: Which type of consumer/survivor-operated program fills an existing service need in the community? * Level of "Science": Will the state limit funding to "evidence-based practices" or consider other exemplary or developing programs? * Culture of the Funding Authority: To find the best fit, states must consider, for example, which program has the potential for adhering to state guidelines and policies? Will the state require credentialing or certification which may be at odds with the peer-led program? * Are there additional non-state funding sources (such as the Medicaid Rehabilitation Option) which could augment direct state support and supplement vital program operations (such as staff supervision)? * What level and type of technical support is necessary to ensure that the programs are successful? Incorporating appropriate technical assistance can make the difference between successful and unsuccessful consumer/survivor-operated programs. Areas in which the state may want to consider providing assistance include: * General business management: In order for a program to be sustainable, it must have sound business practices and engage in strategic planning. * Non-profit organizational management: While not all peer-led programs are delivered through non-profit organizations, those which are may need help in areas such as filing for 501(c)3 status, developing the board, or fundraising. * Fiscal management and accounting: Some peer programs may find it especially challenging to develop and maintain standard financial procedures. For example, what financial accounting forms will the peer program use and will these be sufficient for the program to be funded? * Human Resource management: This area includes staff hiring and supervision, conflict resolution, and cultural diversity. * Legal and regulatory compliance: Similar to other new grantees, peer-led programs may need to be oriented to complex state and federal policies such as HIPAA. Phase 2: Issues to Consider as States and Consumers/Survivors Work Together If consumers decide to work with the state or sub-state mental health organization, there are a number of ways that they can partner to promote the development or expansion of consumer-operated services. States and consumers can work together to build the organizational capacity of the consumer/survivor organization, finance the peer-supported services, and monitor the ongoing effectiveness and sustainability of the program. « Building Capacity As with any organization that either initiates or expands its operations, consumers/survivors face a daunting series of tasks, including building the capacity of their organization. Some of the many tasks which consumers might undertake include: * Conducting needs assessments and identifying service gaps that could be filled by consumer-operated services; * Developing short-term and long-range strategic plans; * Diversifying funding to maximize sustainability of the program; * Organizational development, including: * Developing policies and procedures for staff and users of the program; * Deciding whether to operate as a stand alone program or to align with another program/agency; * Incorporating as a business or remaining an unincorporated association (with the members having legal responsibility and liability for the program); * Incorporating either as a for-profit or non-profit entity (see text box). * Hiring, training, and supervising staff; * Offering and administering employee benefits; * Locating space; * Conducting outreach in the community; * Complying with local, state, and federal regulations. If the program decides to incorporate as a non-profit organization, other tasks then follow, such as: * Preparing Articles of Incorporation and filing with their Secretary of State; * Filing, at both the state and local levels, for tax exempt 501(c)3 status as a nonprofit organization; * Recruiting and managing a Board; * Maintaining corporate records (including budgets and Corporate minutes). Fortunately, there are numerous resources available that can be helpful. Several examples below illustrate the types of resources available: Ë Example: The Leadership Academy - Training in advocacy skills The Leadership Academy, offered through the Consumer Organization and Networking Technical Assistance Center (CONTAC), has developed into a program for building consumer advocacy skills through peer-led trainings and follow-up networking at the local level (www.contac.org/WVMHCA ). In addition, CONTAC operates the African American Women's Leadership Academy. The program receives CMHS funding and is operated by WVMHCA. Community organizations and other groups invite the Leadership Academy to train participants selected by the host organization. Using a train the trainers approach, the Academy offers beginning and advanced seminars in consumer advocacy and has trained over 1,000 consumers from 15 states. Trainees who are interested and able may go on to become trainers at other "Academies" which CONTAC offers. Therefore subsequent trainees will be taught by their peers who are members of the host community. The Academy uses a skills-based curriculum; topics include "etiquette of consumer involvement, identifying issues, gathering information and making reports, conducting effective meetings, and forming advocacy organizations." (Sabin and Daniels, 2002) CONTAC also has provided technical assistance in four states as consumers have formed statewide networks in Massachusetts, Maine, Virginia, and Illinois. The Academy sponsors an annual conference which offers workshops presented by both graduates and expert guests. As with all of its programs, CONTAC uses continuous quality improvement to refine how it implements its services. Reported outcomes of the Leadership Academy training have included "an increase in empowerment and networking, better understanding of the workings of the systems, development of individual and organizational advocacy skills, and an improvement in leadership skills of individuals and organizations involved in behavioral health." (quoted from akmhcweb.org/Trips/asmithalternatives2001.htm) In addition, a basic pre-post evaluation of this program has demonstrated the effect the program had on empowering participants to write letters, raise funds, and join oversight groups (Hess et al, 2001). Other research has supported the work of the Academy (Sabin and Daniels, 2002). Ë Example: TEAM Tool Kit - Training in self-advocacy and business skills A more recently developed training program is operated through The National Mental Health Consumers' Self-Help Clearinghouse. The Clearinghouse offers a 3-day training program at both the local and state levels, through which it distributes its TEAM Tool Kit. Using a train-the-trainers approach, Clearinghouse staff helps other consumer/survivor participants build their skills. While similar in some ways to the Leadership Academy, the TEAM Tool Kit specifically targets areas of self-advocacy, and business aspects of consumer-run services (including planning, fundraising, budgeting, and board development). Participants then go on to train other consumers. Several states have supported local consumers in their efforts to build capacity by funding very active consumer support centers, operated by and for consumers. RESOURCES: CONSUMER SUPPORT CENTERS * The Office of Consumer Technical Assistance (OCTA) is funded by the Oregon Department of Human services, Office of Mental Health and Addiction Services. OCTA provides consumers with a wide range of trainings including: Fund raising and grant writing; leadership training; goal setting and strategic planning; creating an advisory board; organizing a new consumer-run group (support group, social group, or drop-in center); and training in filing for 501 (c) 3 status. OCTA also provides mini-grants. (www.orocta.org/home/Trainings) * The Virginia Organization of Consumers Asserting Leadership (VOCAL) also provides a wide range of technical assistance to consumers related to starting and operating a consumer-operated service program. Their activities include: A training program entitled Cookbook for Consumer-Run Programs; training on filing for 501 (c) 3 status; catalogues of consumer-run programs in Virginia; a mini-grant program entitled Two People Two Chairs, and individual technical assistance (www.vocalsupportcenter.org/services.htm ). * The National Consumer Supporter Technical Assistance Center (NCSTAC) has a publication describing how consumers can establish 501 (c) (3) status for their organization. (www.ncstac.org) « Financing Services: Like any other business, consumer-operated services need continued funding to survive. A range of funding opportunities and structures may be appropriate for states and peer-led programs to consider. For example, the state might want to consider using the federal Medicaid "Rehab Option" to support peer services. In several states, the departments of mental health have sought to include peer-operated services within their Medicaid state plans. The "Rehab Option" has become especially attractive to states because it is flexible. It permits a broader range of qualified providers (such as peers) and a wider range of service delivery contexts than under traditional Medicaid state plans. Although all but one of the 50 states use the Medicaid "Rehab Option", only eleven states currently use the option to support peer services. Nine of these states have woven the peer support into other programs but two states (Georgia and South Carolina) have a separate peer support program under the Rehab Option. George's Certified Peer Specialist Program has been cited as fully functioning model program. Ë Example: Using the Medicaid Rehab Option - Certified Peer Specialist Program As an exemplary program, Georgia's Certified Peer Specialist Program, has garnered nationwide attention and been the subject of peer-reviewed articles (Sabin and Daniels, 2003). In order to tap into Medicaid funding, the state of Georgia has been the first to use the "Rehab Option" in providing peer support to those using public mental health services (www.gacps.org ). The program's emphasis is strength-based. Having "been there" the CPS's are able to understand not only where other consumers/survivors are, but to also address system-level issues that promote recovery. The Peer Specialist Certification Project holds trainings at least two times per year and provides continuing education quarterly (through workshops and seminars) to those previously certified. Over 163 Certified Peer Specialists have been trained and are employed by public and private providers. For example, state-supported consumer-operated Peer Centers employ CPS's under established guidelines which maximize Peer involvement in the governing of the center and which encourage consumers to direct their own recovery. As Georgia's program has grown, other states have become interested in using the Rehab Option to expand peer-delivered mental health services. In an effort to provide technical assistance to other states, Georgia has published its "Consumer-Driven Road to Recovery" manual on the web (available in PDF format: www.gacps.org ) While the "Rehab Option" is one way for states to incorporate peer-led services into their grant portfolio, other federal-state funding mechanisms exist within Medicaid. Alternative models may require the state to use Medicaid funds in other ways or tap into further funding sources, such as the Mental Health Block Grant Program. Consumer organizations may have to "think outside the box" and implement innovative business and service structures. Two examples, described below, include a consumer-controlled purchasing cooperative operating in Michigan that recently was granted non-profit status and a 24-hour peer-led emergency respite program. Ë Example: The Michigan Consumer Cooperative - Consumer-controlled purchasing of mental health services The Michigan Consumer Cooperative is a non-profit organization owned and controlled solely by consumer-members using its services (groups.msn.com/MichiganConsumerCooperative). One of the key principles of the cooperative is that consumers/survivors must have incentives to obtain quality services at the lowest price - that consumers should know the cost of their services and then have the ability to control the purchasing of those services. Therefore, in this relatively large-scale setting, cooperative members buy traditional and alternative services they need, based on the person-centered plan they design, from an array of existing contractors. Individuals use Medicaid and other public dollars that would have ordinarily been spent on Community Mental Health Services (CMHS) to pay for services organized through the Co-op. For members, some of the benefits are increased choice through person-centered planning, increased purchasing power, and strengthening quality services. In 2000, a 30-person "Design Team" was formed (including primary and secondary consumers, advocates, a national vendor, representatives from several CMH Boards and an individual from the Michigan Department of Community Health). The team articulated the underlying principles and outlined the fundamental structure of the cooperative. Meanwhile, the Michigan Department of Community Health applied for and received a federal Real Choice Systems Change grant. Following a competitive procurement process, the Michigan Consumer Cooperative was selected as the grant recipient. Board members for the Cooperative are elected by other consumers and board meetings are open to the public. Although the cooperative originally wanted peer managers, in practice, consumer/survivors with degrees have taken on the roles of Case Managers and work with other consumers (either independently or through an agency). The Cooperative has established several mechanisms for monitoring and documenting quality of services and outcomes. A Quality Management Plan (with measurable goals) is developed each year, and is approved and monitored by the Board. Second, the Cooperative has Standards and Best Practices for its provider network, with measurable quality indicators (such as timeliness of services, satisfaction, consumer withdrawal rate, and others). Third, through its contract with CMHSP, the Cooperative's performance is monitored and evaluated. Finally, as a non-profit organization, the Cooperative has hired an independent evaluator to assess the program. Ë Example: Stepping Stone - Emergency Respite Care Stepping Stone is one of 15 peer support agencies (PSAs) in New Hampshire, funded through the Division of Behavioral Health via the Federal Block Grant. While the foundation of Stepping Stone is its peer support center, the organization also operates an innovative two-bed respite program. The Respite Program is free to all New Hampshire residents, but is available at $299/day for out of state residents. Begun in 1997, the Respite Program has 24 hour on-site peer support and is currently staffed by 8 peer- workers. Staff participate in a comprehensive training program. The philosophy of the program is that crisis "is not defined as a negative experience, but rather, as an opportunity for growth: even in the midst of overwhelming situations." While the average length of stay in the Respite Program is three days, the maximum permitted is seven due to an ongoing waiting list. Applicants to the Respite Care program must fill out a 48 hour crisis plan before being admitted. The Respite Care Program is based upon the Relational Model of Peer Support. Staff and guests are expected to participate as equal partners in the day-to day tasks of the program, including preparing meals and doing chores. Respite staff conduct exit interviews to see if guests would like additional care after leaving Stepping Stone and for those who are interested, the peer support center is offered as one option. In addition, the Respite Program is collecting satisfaction data from the guests (for example, asking them to compare the Respite Program with any previous experience with hospitalization) (www.m-power.org/AIrespite.htm ) « Monitoring Effectiveness and Sustainbility: As with other state-supported programs, consumer-operated services will need to document effectiveness of their program. As funders, states will need to consider what forms of technical assistance and support consumer-operated programs will need to meet monitoring requirements and to develop the sustainability of the program. Some consumer-operated programs may already have procedures in place, while others will need to consider the following tasks: * Obtaining buy-in across the organization for the need to monitor program effectiveness (this also includes identifying and responding to barriers to collecting information); * Charging peer-leaders with deciding which program outcomes are most appropriate to monitor; * Selecting indicators to use in monitoring these outcomes; * Designing and implementing record keeping systems to monitor the program; * Orienting program staff/volunteers to new data procedures; * Designing continuous quality improvement systems to provide feedback to the program; * Developing internal mechanisms to use data on program effectiveness to expand the funding base of the consumer program. Resources, both from within the consumer community and from among other community groups facing similar challenges, exist to guide consumer-led programs in monitoring effectiveness and ensuring sustainability. Some of these resources include: ? Evaluation guidelines: Mark S. Salzer (Center for Mental Health Policy and Services Research at the Univ. of Pennsylvania) has proposed guidelines for evaluating effective programs www.bhrm.org/guidelines/salzer.pdf . ? Indicators for assessing peer support: Some consumers/survivors, as well as evaluators, have asked how peer-led efforts differ from mainstream services, and then have used qualitative research to begin identifying standards of peer support with specified indicators for each standard (Mead and MacNeil, 2003). ? Multi-stakeholder models: Since consumers/survivors of mental health services often work in collaboration with non-consumer providers and policy-makers, there will likely be disagreements about what constitutes an effective program. Therefore, a multistakeholder model that can assess the viability and effectiveness of peer-led programs, taking into account these different perspectives, has been suggested (Campbell 1996) ? Sustainability toolkit: The Center for Civic Partnerships, a California-based nonprofit organization providing technical assistance and consultation to community groups, has developed a toolkit for guiding civic and community groups toward sustainability www.civicpartnerships.org/files/SustainabilityToolkit.pdf SUMMARY Consumer/survivor -operated programs have had a significant impact on the delivery of mental health services in this country. The central values of consumer-operated services (empowerment, choice, and to a growing extent, self-determination) now are recognized within the traditional mental health system. At a systems level, consumers/survivors have a formal and recognized voice in planning, implementation, and research. There is an established consumer/survivor presence on national policy boards/organizations (e.g. National Advisory Board at CMHS) and a mandated presence of consumers in planning, delivery and evaluation of mental health programs. Many states have established offices of consumer affairs within their mental health authority/agency. As a result, not only do consumers/survivors run their own programs, but there has been an increase in the number of consumers/survivors hired as employees within traditional mental health programs and agencies. Consumers also have a recognized role, not only in participating in research, but also in designing, conducting, and publishing from research. Finally, a range of policy issues and best practices designed to address these issues have been presented here. Readers are urged to consider these and other developments within the field of consumer/survivor-operated mental health services as potential options in supporting the work of the consumer/survivor communities. RESOURCES Contact information for consumer-operated organizations and programs * Consumer Empowerment and Leadership Training - www.mhav.org/celt.html or www.contac.org * Consumer Organization and Networking Technical Assistance Center - www.contac.org * Independent Living Research Utilization - www.ilur.org * Mental Health Association of Southeastern Pennsylvania - www.mhasp.org * National Association for Rights Protection and Advocacy - www.narpa.org * National Empowerment Center - www.power2u.org * National Mental Health Consumers' Self-Help Clearinghouse - www.mhselfhelp.org Consumer-directed on-line/electronic resources (websites, listservs, chat rooms) * Advocacy Unlimited - www.mindlink.org * Agoraphobics Building Independent Lives - www.anxietysupport.org * CHARG Resource Center - www.charg.org * ACT-MAD - www.actmad.net/nuke/ * Depressed Anonymous - www.depressedanon.com * Healing Touch (self-injury) - www.healthyplace.com/Communities/Self_Injury/healingtouch/ * MadNation - www.madnation.org * People Who - www.peoplewho.org * Support Coalition International: Human Rights and Psychiatry - www.MindFreedom.com A few of the many sites which contain links to consumer-directed on-line/ electronic resources: * Center for Mental Health Services - Consumer/Survivor related links: www.mentalhealth.samhsa.gov/consumersurvivor/links.asp * ERIC Clearinghouse on Disabilities and Gifted Education: ericec.org/mental.html * National Empowerment Center: www.power2u.org/dont.html Other resources and organizations (with significant consumer input) * American Self-Help Clearinghouse - www.mentalhelp.net/selfhelp Also see summary of peer support studies: www.mentalhelp.net/selfhelp/selfhelp.php?id=864 ) * Consumer Operated Services Program - updated study results www.cstprogram.org * International Association of Psychosocial Rehabilitation Services (IAPSRS) - www.iapsrs.org * National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA) - www.nasmhpd.org/consurdiv.htm * National Association of Protection and Advocacy Systems, Inc (NAPAS) - www.protecitonandadvocacy.com * National Association of State Mental Health Program Directors (NASMHPD) - www.nasmhpd.org * NAMI (Consumer-supporter TA) --- www.nami.org * National Health Law Program - www.healthlaw.org * National Mental Health Association (Consumer-supporter TA) - www.nmha.org * National Research and Training Center of the University of Illinois at Chicago (Workgroup on self-determination and empowerment: www.psych.uic.edu/UICNRTC/uicnrtc-sdbib.pdf ; also see www.Psych.uic.edu.UICNRTC/self-determination.htm * Recovery Tools - recoverytools.org * Substance Abuse and Mental Health Services Administration (SAMHSA) www.samhsa.gov * Technical Assistance Collaborative - www.tacinc.org SELECTED BIBLIOGRAPHY ON CONSUMER-OPERATED SERVICES AND OTHER CITATIONS Anthony, W.A. 1994. 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Riverside, CA: California Network of Mental Health Clients. 1 The following individuals were consulted during the writing of this brief and provided information, insight, and suggestions: Jean Campbell, Principal Director for the Coordinating Center for the Consumer-Operated Services Program (COSP) Multisite Research Initiative; Paolo Del Vecchio of CMHS; Larry Fricks, Director of Consumer Relations in the Georgia Department of Human Resources; J. Rock Johnson of NAMI (Nevada); Shery Mead, peer support consultation and training; Marcy Miller of the Michigan Consumer Cooperative; Susan Rogers of the Mental Health Association of Southeastern Pennsylvania; and Jeanie Whitecraft of the Friends Connection. Any misinformation contained in the document, however, remains the responsibility of the author. 2While some prefer to call themselves "consumers", others use the term "survivors", "ex-patients", "clients", "inmates", "psychiatrically labeled", "primary consumers", "users", or "recipients." This brief uses the commonly-used term "consumers/survivors" to include all of these designations. ?? ?? ?? ?? 1