Substance Abuse & Mental Health Services Administration

CMHS Consumer Affairs E-News
January 15, 2004, Vol. 04-04

2003 Year in Review

Substance Abuse and Mental Health Services Administration
Center for Mental Health Services
Associate Director for Consumer Affairs

The following is the first in a series of year in review summary articles on the Center for Mental Health Services' (CMHS) consumer affairs activities that are located in the office of the Associate Director for Consumer Affairs (ADCA) in the Office of the Director at CMHS. The Staff include the Associate Director for Consumer Affairs, Paolo del Vecchio, and Consumer Affairs Specialists Carole Schauer and Chris Marshall. Carlton Speight recently joined the consumer affairs staff as a public health advisor and Hope Williams serves as secretary to the Associate Director.

The following are highlights of the past year's activities of the consumer affairs staff at CMHS.

Co-Occurring Mental Illness and Addiction: Consumers and Service Providers, Policymakers and Researchers in Dialogue. On May 13-14, 2003 in Warrenton, Virginia, consumer affairs staff convened a participatory dialogue meeting that brought together mental health consumers with co-occurring mental illness and addiction issues and providers, policymakers and researchers. Participants were asked to identify and discuss the many longstanding systemic barriers to appropriate treatment and support services for people with co-occurring issues and provide recommendations that support successful partnerships between the two groups, address the barriers to effective services, and promote recovery.

The Co-Occurring Dialogue was intended to build upon the findings of the congressionally mandated and comprehensive report on the treatment and prevention of co-occurring substance abuse and mental health disorders completed by SAMHSA and delivered to Congress on December 2, 2002.

Some of recommendations from the meeting include forming and maintaining consumer-driven partnerships in policymaking, research and service delivery; embedding a whole-person focus in the both service system; transforming workforce development that emphasizes peer-based approach; and expanding programs to reduce stigma and discrimination against underserved populations.

The final report of the meeting is near completion and will be available soon. Please contact Chris Marshall for more information (contact information below).

New Freedom Initiative: CMHS/ADCA continues to provide leadership for the New Freedom Initiative announced by President Bush on February 1, 2001. The initiative is a comprehensive plan that directs the Federal government to remove barriers to equality and community living for people with disabilities. The final report to the President that provides more than 400 specific solutions that agencies can use to support community living is at web site www.hhs.gov/newfreedom/final. SAMHSA staff works closely with the HHS Office of Disability on solution workgroups including Transportation, Housing, Employment and Caregiving that work toward collaborative activities to promote community integration. For more information, please contact Carole Schauer.

Consumer/Survivor Regional Meetings: CMHS/ADCA continues to hold consumer/survivor regional meetings to identify critical needs and receive recommendations from mental health consumers on a regional basis on how to improve mental health services and to attain suggestions on how to address consumers' concerns. Regional meetings also provide an opportunity for people to convene on a regional basis so that they can network and share information about what they have learned in their efforts to improve the lives of people with mental illnesses. Findings from these meetings help inform national and State agendas.

In 2003, a regional consumer/survivor meeting was held in Philadelphia, Pennsylvania, that represents Region III and included consumer representatives from the District of Columbia and the States of Delaware, Maryland, Virginia, West Virginia, and Pennsylvania. Mental health consumers in Region III identified their top priority needs as follows:

1. Consumer-run services
   
2. Recovery education
   
3. Excessive focus on medical model
   
4. Respect and choice/self-determination
   
5. Housing

Also in 2003, a regional consumer/survivor meeting was held in Dallas, Texas that represents Region VI and included representatives from the states of Arkansas, Louisiana, New Mexico, Oklahoma, Texas. The top priority themes and service needs identified by mental health consumers in Region VI are:

1. Transportation
   
2. Housing/Homelessness
   
3. Self-help, peer support, self-care, self-advocacy
   
4. Transition services (from hospital and jails into communities, youth transition services)
   
5. Consumer-run services, certified peer specialists

Summaries of these meetings are available upon request. CMHS/ADCA will be holding regional consumer/survivor meetings in 2004 in Boston, Massachusetts, representing Region I and includes consumer representatives from the States of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. A second regional meeting in 2004 will take place in Atlanta, Georgia representing Region IV and includes consumer representatives from the States of Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, and Tennessee. Please contact Carole Schauer for more information.

Support for Consumer Participation: CMHS/ADCA supports consumer participation at national and other mental health meetings. The effort promotes the communication of consumer perspectives related to mental health policy and program development and implementation to mental health professionals, policy makers, and State officials. The effort also provides CMHS with valuable consumer perspectives on current cutting-edge recovery, treatment, rehabilitation and support services, and emerging trends and issues in mental health service delivery. In FY2003, 182 consumers received support for participation in 12 national meetings. Scholarship availability for meetings in 2004 will be announced on the CMHS Consumer Affairs E-News. For more information, please contact Carole Schauer.

Seclusion and Restraint: CMHS/ADCA continues to provide leadership in agency efforts to ensure consumer protections related to the use of seclusion and restraint. A brief review of activities over the past year includes drafting and finalizing a SAMHSA National Action Plan to Reduce and Ultimately Eliminate Seclusion and Restraint. In addition, a National Call to Action meeting was convened on May 5, 2003 in conjunction with the National Association of State Mental Health Program Directors (NASMHPD) that brought together approximately 200 stakeholders to launch the national action plan. SAMHSA/CMHS sponsored 4 regional trainings to develop strategic action plans to reduce/eliminate seclusion and restraint in 24 States and the District of Columbia. This included the development of a database on seclusion and restraint performance measures.

2003 was the 2nd year of a grant program designed to identify effective staff training practices to reduce seclusion and restraint use in children=s facilities. This 3-year, million per year effort is a demonstration project with 8 sites.

CMHS/ADCA also developed a draft consumer-driven staff training manual on alternatives to the use of seclusion and restraint and procured a contract to pilot test this manual in two facilities. Contact Paolo del Vecchio for more information.

HIPAA Consumer Education: CMHS/ADCA continues to provide leadership in educating mental health consumers about the new rules and individual rights implemented in 2003 regarding the privacy of healthcare information established by the Health Insurance Portability and Accountability Act of 1996. A consumer education card that explains the new rules and rights has been completed and will be available in the coming year. Consumer affairs staff also gave presentations to consumers in state hospitals and in other settings to help educate consumers about HIPAA. For more information, please contact Chris Marshall.

Self-Disclosure Monograph: CMHS/ADCA began production of a report that will examine issues related to self-disclosure of persons with mental illnesses including what factors promote or hinder self-disclosure. Recommendations will be offered that will assist in efforts to address discrimination and stigma. For more information, please contact Paolo del Vecchio.

Self Care Project: CMHS/ADCA initiated a project in 2003 to develop and produce a training protocol to be used by State, county and local mental health delivery systems that will identify self-help skills and strategies to aid people with mental illnesses to achieve levels of wellness, stability and recovery. The manual will be based on a train-the-trainer model intended for trainees who are people in mental health recovery, parents, and mental health workers. It is expected that those trained will be able to lead consumers through self-care and recovery planning training. The manual and protocol will detail both the content of the training as well as the process that a public mental health system may use in implementing the training. For more information, please contact Chris Marshall.

Peer Specialist Project: CMHS/ADCA began a project in 2003 that will develop a Peer Specialist Certification Program Toolkit to be used by State mental health delivery systems. The toolkit will use the Georgia Peer Specialist Certification Project as a model. The Georgia program trains former or current mental health consumers to become Certified Peer Specialists (CPS) who provide peer support services that are reimbursable under the Medicaid Rehab Option. This toolkit will include a manual for States with detailed information on the steps needed to design, plan, implement, and manage a Medicaid reimbursable Certified Peer Specialist Program; a guide for consumers and advocates to understand the program; and one-page fact sheets on the program. For more information, please contact Chris Marshall.

Advance Directives: CMHS/ADCA began collaboration with the National Association of State Mental Health Program Directors, NASMHPD, to hold a meeting with a variety of stakeholders to discuss how to develop and utilize advance directives for people with mental illnesses. A planning paper will be developed from this meeting that will provide SAMHSA and CMHS direction to begin working towards an initiative on advance directives. For more information, please contact Carole Schauer.

Employment CD: CMHS/ADCA began production a CD-ROM about employment practices and issues related to employing people with disabilities. The CD-ROM, targeted towards employers, will provide a summary of the SAMHSA/CMHS previously held meeting entitled the "National Summit on Employment of People with Psychiatric Disabilities." For more information, please contact Carlton Speight.

Transportation Report: CMHS/ADCA is developing a briefing paper on transportation issues for individuals with mental illnesses that describes the current transportation barriers and issues for mental health consumers, both urban and rural, and identifies model transportation efforts that exist nationally for mental health consumers. The report will also identify current available Federal, State and private funding mechanisms for transportation services and propose activities that could be undertaken to improve access to and increase public and specialized transportation services for mental health consumers. Finally, the report will address ways that consumers themselves may be involved as volunteers or employees in providing or developing transportation services. For more information, please contact Carole Schauer.

Consumer Direction: CMHS/ADCA is planning for the development of an initiative on Consumer Direction to serve adults and children with mental health and/or substance use disorders. A series of issue papers will be developed related to implementing self-determination models for these populations. A two-day summit will be convened in early 2004 in the Washington, D.C. area for 50-60 stakeholders using the issue papers and the recommendations made in the Self-Determination Initiative Planning Meeting Report of April 15, 2003. The participants will provide SAMHSA with recommendations on developing and implementing consumer direction initiatives. For more information, please contact Carole Schauer.

Adult Homes Initiative: CMHS/ADCA began efforts to address the needs of mental health consumers in adult home settings. Plans include the development of a briefing paper concerning the use of adult homes for adults with mental illnesses, and holding a one-day meeting in the Washington, D.C. area. The purpose of this meeting will be to examine the current state of national adult home issues as they relate to people with mental illnesses and the successes and problems in moving model approaches forward for this population. The participants will also develop a suggested action plan. For more information, please contact Paolo del Vecchio.

Mental Health of Veterans: CMHS/ADCA is providing consultation to the Veterans Administration (VA) on efforts to improve mental health service delivery to the Nation's veterans. CMHS/ADCA developed a briefing paper on the value of self-help approaches, leading the VA to initiate efforts in this area. Contact Paolo del Vecchio for more information.

CMHS Consumer Affairs E-News: The CMHS Consumer Affairs E-News is a service from CMHS/ADCA designed to provide useful news and information on Federal mental health-related activities in support of the meaningful participation of mental health consumers and their supporters at all levels in the mental healthcare system. The focus is on issues that include consumer involvement in the delivery of treatment and services, efforts to reduce discrimination and stigma, updates on national, state and local consumer-operated programs, self-help services, and programs that promote independence and recovery. It includes news about CMHS sponsored scholarships, updates on the activities of the CMHS Subcommittee on Consumer/Survivor Issues, efforts to promote self-determination, and highlights of CMHS grant activities. The E-News also features related SAMHSA and CMHS policy updates, press releases, grant announcements, new publication notices, fact sheets, and conference and meeting notices. To sign up for the CMHS Consumer Affairs E-News go to http://www.mentalhealth.samhsa.gov/consumersurvivor/default.asp. Please contact Chris Marshall for more information.

CMHS Caucuses at National Meetings: CMHS/ADCA staff continues to give presentations on CMHS and ADCA activities and receive public input in caucuses at national meetings. In 2003, CMHS/ADCA staff participated in caucuses at the National Mental Health Association's national meeting in Washington, D.C. and the annual MHSIP (Mental Health Statistics Improvement Program) Conference on Mental Health Statistics also in Washington, D.C.

History Project: CMHS/ADCA staff has made progress on an initiative to support restoration of abandoned patient cemeteries on state hospital grounds. Throughout the country, many state hospitals patient cemeteries have been abandoned. The brush has grown over the graves and the mostly anonymous markers have been damaged and destroyed. The History Project will help restore many of these sites and attempt to bring dignity and respect to the individuals who are buried there.

In 2003, several site visits to states took place to provide technical assistance, a training and educational video that highlights successful restoration efforts was produced, oral histories from consumers were compiled in two reports that emphasize the historical experience of children and African Americans who lived in state institutions, and a program manual was developed that serves as a guide to the restoration /process and includes information on how to develop housing and jobs for mental health consumers as a positive outcome from the sale of state hospital property. These products will be available in the coming months for distribution. Please contact Chris Marshall for more information.

For more information on any of the activities of the office of the Associate Director of Consumer Affairs, contact ADCA staff at:

CMHS/ADCA
5600 Fishers Lane
Parklawn Bldg., Room 15-99
Rockville, MD 20857

Individual Contact Information:

Paolo del Vecchio, M.S.W.
Associate Director for Consumer Affairs
T: 301-443-2619
F: 301-443-5163
Email: pdelvecc@samhsa.gov

Carole Schauer, M.S., R.N.
Senior Consumer Affairs Specialist
T: 301-443-8304
F: 301-443-5163
Email: cschauer@samhsa.gov

Chris Marshall
Consumer Affairs Specialist
T: 301-443-8659
F: 301-443-5163
Email: cmarshal@samhsa.gov

Carlton Speight
Public Health Advisor
T: 301-443-8809
F: 301-443-5163

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The Center for Mental Health Services is a component of the Substance Abuse and Mental Health Services Administration, United States Department of Health and Human Services.