Report from Advocacy Dialogue Session
August 23-26, 2001
||Edie Mannion (Session 1 only)
||Session 1, August 23, 2002|
Defininition of a (consumer) advocate:
- One who is working to educate, empower and stand up for the rights of
others . . . Working with/for people . . . Advocating for common goals,
fairness, working for change, teaching, giving, and spreading a voice.
Barriers to advocacy education:
- Fear of retribution from mental health system if people speak out.
- Lack of networking/outreach. (Consumers not knowing all the
- Lack of help as people transition from one system/agency to another.
(Overlap with Forensic Plank)
- Not enough public policy work and legislation education.
- Children need more advocates.
- Multicultural Issues. (Overlap with Multicultural Plank)
- Stigma/Discrimination. (Overlap with Stigma Plank)
- Providers don't inform consumers of their alternatives.
- Disincentives for consumers.
- Hopelessness of consumers.
- Sabotage by advocacy trainers (language, no breaks, long sessions).
- Peer advocacy in hospitals (language barriers, illiteracy of some
- Public policy education.
- Not knowing about successful grants and programs to replicate.
- Lack of funding for advocacy positions.
- Lack of jobs and unemployment.
- Community mental health centers don't want to give up control.
- Lack of knowledge about impact of state and federal laws on consumers
(e.g., the Brady bill).
Action plans for top priority barriers to advocacy education
Motivational training (identify reasons for apathy).
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.
Conferences, seminars, etc.
3. Networking and outreach:
Develop lists of resources with descriptions of services.
More clearinghouses (especially at state level).
More Web sites.
4. Helping people transition from one system to another (overlap
with Forensic Plank):
Mentor or buddy system programs.
More case management when people leave a system.
More support systems.
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
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
Solicit universities and colleges (language programs, multicultural clubs in
sororities and fraternities).
Look for interpreter services in phone book.
||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:
Develop, within state coalitions, bimonthly meetings for advocates to share
ideas, discuss new issues, provide support.
1. Peer Support Groups
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.
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
Entitlement specialists provide support/information to consumers.
3. Medical/psychiatric support
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
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)
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)
Gain support and understanding to promote mental health awareness to civic,
social and existing organizations.
7. Access to Technologies
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
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
Make sure that consumers receive technical training.
Establish listservs and chat rooms to enhance consumer communication.
11. Family Support
Educate families about mental health in general and the needs of the
consumers who are their family members.
Strengthen the family support system.
Provide more and realistic job opportunities and training for consumers who
receive mental health services.
Work with local disability and aging groups to develop urban and rural
Get consumers on transportation boards to push for adequate, affordable
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)
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
Have a toll-free advocate "warm line" to provide support, assistance.
3. Access to Services (Medications, Clinicians, Etc.)
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
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