Report from Advocacy Dialogue Session
Alternatives 2001
Philadelphia, PA
August 23-26, 2001

Facilitator: Paula Stockdale
Reporter: Edie Mannion (Session 1 only) Session 1, August 23, 2002

Defininition of a (consumer) advocate:

Action plans for top priority barriers to advocacy education identified:

1. Apathy
  • Motivational training (identify reasons for apathy).
  • Assertiveness training.
  • Empowerment training.
  • Literacy training.
  • Training for managed care professionals.
    2. Fear of retribution from mental health system:
  • Anger management training.
  • Educate people about their rights.
  • Documentation and accountability for incidents of retribution.
  • Mediation training.
  • Conferences, seminars, etc.
    3. Networking and outreach:
  • Develop lists of resources with descriptions of services.
  • More clearinghouses (especially at state level).
  • More hotlines.
  • More Web sites.
    4. Helping people transition from one system to another (overlap with Forensic Plank):
  • Mentor or buddy system programs.
  • Compeer programs.
  • More case management when people leave a system.
  • Adequate housing.
  • More support systems.
  • More respite.
    5. Public policy work and legislation education:
  • Prioritize the issues.
  • Get people organized.
  • Hire a lobbyist (paid or unpaid).
  • Identify all the issues and resources before addressing an issue.
  • Identify the legislators partial to your issue (stay partisan).
    6. Advocacy for children:
  • Identify all the groups that already advocate for children.
  • Identify the issues (e.g., abuse in mental health system, rights, criteria for diagnosis, guidelines for medication and treatment).
  • Improve education in medical schools regarding treating children's mental health issues.
  • Establish advisory panels to monitor and prevent abuse and wrongdoing against children in agencies and hospitals.
  • Lobby for children's rights.
    7. Multicultural issues (overlap with Multicultural Plank):
  • Especially when language barriers prevent peer advocacy:
  • In federal facilities, enforce Title VI, which requires that interpreters be provided.
  • Solicit universities and colleges (language programs, multicultural clubs in sororities and fraternities).
  • Look for interpreter services in phone book.
    Facilitator: Paula Stockdale
    Reporter: Maryann Ludwig (Session 2 only) Session 2, August 24, 2002

    Update: Overview of prior day's session

    Financial and community support (local, state and national levels)

    To become an advocate, consumers need:
    1. Peer Support Groups
    Action Steps
    :

  • Develop, within state coalitions, bimonthly meetings for advocates to share ideas, discuss new issues, provide support.
  • Contact other area non-profits for ideas and assistance.
  • Look to your local state consumer group (Office of Consumer Affairs) for assistance in forming peer groups.
    2. Benefits/Entitlements
    Action Steps
    :
  • Get assistance in applying for benefits.
  • Placement of properly trained advocates in appropriate places (drop-in centers, etc.) to help people with application process, grievance process, job training, etc.; provide consumers with training in financial and community support; and provide technical assistance for consumers who are consumer advocates.
  • Entitlement specialists provide support/information to consumers.
    3. Medical/psychiatric support
    Action Steps
    :
  • Give training to peers to be able to specialize in services regarding benefits and entitlements.
  • Refrain from using consumers as tokens as much as possible and ensure that at least two peers serve on boards or committees.
    4. Stipends/Reimbursements ("financial aid" to get to meetings)
    Action Steps:
  • Reimbursements should be paid to consumers in advance or in a timely manner for travel and meals to and from meetings.
  • Ensure that SSI/SSDI and other services do not conflict with stipends, services and reimbursements that consumers are entitled to receive.
    5. Equal pay for equal work (where applicable)
    Action Steps
    :
  • Make sure consumers get equal pay for equal work when the consumer agrees to assume this responsibility.
    6. Civic Organization Support (awareness of and sensitivity to mental health issues and the system)
    Action Steps
    :
  • Gain support and understanding to promote mental health awareness to civic, social and existing organizations.
    7. Access to Technologies
    Action Steps
    :
  • Make sure that consumers receive computer training and also make sure that consumers have the technical equipment they need to advance.
    8. Spiritual 9. Political Support
    Action Steps
    :
  • Appeal to local and state governments (senators, congressmen) to supply educational/informational materials and other supports (Library of Congress, transportation, food bank).
    10. Access to Technical Education
    Action Steps
    :
  • Make sure that consumers receive technical training.
  • Establish listservs and chat rooms to enhance consumer communication.
    11. Family Support
    Action Steps
    :
  • Educate families about mental health in general and the needs of the consumers who are their family members.
  • Strengthen the family support system.
    12. Jobs/Employment
    Action Steps
    :
  • Provide more and realistic job opportunities and training for consumers who receive mental health services.

    Geographic

    1. Transportation
    Action Steps
    :
  • Work with local disability and aging groups to develop urban and rural transportation programs.
  • Get consumers on transportation boards to push for adequate, affordable services.
  • Ensure that every consumer sitting on a mandated consumer representation board or council receives appropriate transportation to meetings.
  • Propose that taxi services, etc., be paid for by health insurance or half fare for people with disabilities to help complete their daily tasks.
    2. Inclusion (especially in rural areas)
    Action Steps
    :
  • Conduct community roundtables to solicit advocates
  • Form van pools and car pools to help people get to meetings.
  • Use technology (Web sites, teleconferencing) to increase consumer access to meetings.
  • Have a toll-free advocate "warm line" to provide support, assistance.
    3. Access to Services (Medications, Clinicians, Etc.)
    Action Steps
    :
  • Work with local boards, commissions, councils, etc., to define and expand geographic boundaries of service availability (promote use of telemedicine).
  • Educate consumers and peer specialists on the choices that consumers have as applied to medications and clinicians, and pass this information along through consumer-maintained databases.

    Presented by:

    National Mental Health Consumers' Self-Help Clearinghouse

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