California’s protection & advocacy system
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Peer / Self Advocacy Program brochure (pdf) (2 pages, March 2013, Pub #5520.01)
In the mid-1980s, grassroots client organizations advocated for the passage of legislation to protect the rights of people with psychiatric disabilities. As a result of their efforts, the PAIMI Act (Protection & Advocacy for Individuals with Mental Illness) was passed in 1986 to create Protection & Advocacy organizations (P&A’s) in every state to provide advocacy services for individuals with mental health disabilities.
In collaboration with California’s P&A agency, Protection & Advocacy, Inc., (PAI, which is currently Disability Rights California), the California Network of Mental Health Clients (CNMHC) created a client-run advocacy program to teach mental health clients/consumers about their rights and how to exercise them. Under a 2-year contract, they developed and implemented a self-advocacy program based on the self-help philosophy that people who identify as mental health clients can best provide education as role models for their peers. In 1989, the contract ended and the Peer/Self-Advocacy program was established as an integral part of Disability Rights California, with funding from the PAIMI grant.
PSA Staff, 2013 in photo on right
From the beginning, our goals have been to:
1. Help people understand their human, legal, and service rights;
2. Help people learn to exercise their rights to get what they need;
3. Help people become advocates for themselves and their peers;
4. Provide training and technical assistance to community self-help groups as they develop and implement advocacy projects.
To carry out our goals, we facilitate weekly peer/self-advocacy trainings in Institutions for the Treatment of Mental Disease (IMDs) and State Hospitals. We do this by helping residents start their own self-advocacy group. The residents decide what they want to learn about, and we develop a training plan with materials to teach participants how to develop and implement a plan to reach the goals of their choice. PSA staff takes into account the group members’ levels of knowledge and skills and their preferred ways of learning information. Examples of topics include patients' rights, conservatorship, communication skills, legal status, penal code extensions, and how to get out and stay out of facilities.
We also provide peer/self-advocacy trainings in the community. This includes helping people create their own self-advocacy groups and providing outreach to traditionally underserved and unserved communities. In addition, we present workshops on specific topics selected by participants. Some examples of topics include: Learning about community resources and supports; public benefits; employment rights and opportunities; the Americans with Disabilities Act; Psychiatric Advance Directives; and strategies for living independently in the community. We also provide technical assistance and meet with people to help them with specific advocacy projects that they have chosen. For instance, some of the advocacy projects that we’ve helped facilitate include: Planning and organizing a self-help and advocacy conference; coordinating a public forum with law enforcement officers to improve relations with mental health clients; inviting a judge to discuss conservatorship hearings; conducting voter registration drives; and helping people create newsletters by and for the client community.
Training seminars on topics such as legal rights in the mental health system, negotiation and self-advocacy skills, how to develop effective relationships with mental health providers, how to obtain public benefits, and voting rights.
Self-advocacy skills training through group discussions, role-plays, action plans, step-by-step worksheets and guest speakers to help people learn strategies in problem-solving and negotiation.
On-going technical assistance to help people develop peer/self-advocacy programs and services in their local communities.
Outreach presentations regarding community resources and self-advocacy materials to people in traditionally underserved and unserved communities.
Collaboration with other staff members at Disability Rights California to help people identify and pursue a legal or legislative issue.
• Facilitate at least 13 ongoing self-advocacy groups
• Present at least 4 workshops on various topics requested by group members and clients in the community, with at least one workshop for the API community (PAIMI)
• Conduct at least 5 workshops on voting rights (PAVA)
• Conduct at least 5 trainings on stigma and discrimination reduction (CalMHSA)
• Conduct 2 trainings (1 in Northern California and 1 in Southern California ) in collaboration with the Developmental Disabilities Peer Self-Advocacy (DDPSA) program to service providers who work with people with multiple disabilities to address employment rights and return-to-work services available to people with disabilities (CalMHSA)
• Conduct at least 4 outreaches to inform people in the communities about services provided by Disability Rights California and the PSA program – 1 to the API community and 1 to the Native American community (PAIMI)
• Conduct at least 4 voting rights outreaches (PAVA)
• Conduct at least 8 outreaches as part of the Stigma and Discrimination Reduction project (CalMHSA)
• Develop and distribute at least 5 new publications and/or sets of training materials (PAIMI)
• Translate into Spanish and distribute at least 5 current publications and/or sets of training materials (PAIMI/CalMHSA)
• Within the next four years, in collaboration with the DDPSA program, develop a publication on “Employment Rights and Return to Work Services” for people with multiple disabilities, their families, service providers and employers (PAIMI/PADD)
• Help develop fact sheets on stigma and discrimination reduction (CalMHSA)
• Through collaboration with stakeholder groups and community partners, continue to develop the capacity, objectives and activities of the California Memorial Project to become an independent and sustainable community effort (PAIMI/PADD/CalMHSA)
Materials Development: PSA staff developed 6 new sets of training materials, including an action plan and materials entitled “Your Job Interview,” a fact sheet on “Duties of Conservators,” “Self-Advocacy for the Conditional Release Program (CONREP),” “Forced Medication Law (AB366) for people under Incompetent to Stand Trial (IST) commitments,” “Self-Advocacy for people on Incompetent to Stand Trial (IST) commitments” and a “Forensic Publication Request Form.” A total of 1254 sets of materials were distributed at self-advocacy groups and workshops. Through the CalMHSA contract, PSA collaborated with other Disability Rights California staff to develop 5 fact sheets, four of which have been translated into other languages. In collaboration with CalMHSA staff, the PSA program developed 5 fact sheets: “Client-Driven Mental Health Services,” “Definitions of Stigma and Discrimination,” “Mental Health Terminology,” “People First Language,” and “Violence and Mental Illness: An Inaccurate Stereotype.”
Materials Translations: The PSA Program translated 8 sets of training materials or publications into Spanish, including “Duties of a Conservator,” PowerPoint presentations on “Stigma and Discrimination,” “Crisis Prevention” and “Boardmanship,” action plans and materials on “How to Make a Budget,” a “Housing Worksheet for Treatment Team Meetings,” “ADA Pre-Employment Questions,” and “What Should be in an Aftercare Plan.”
Self-Advocacy Groups: The PSA Program conducted 15 ongoing self-advocacy groups, 7 of which were in facilities. In addition, we provided 3 ongoing self-advocacy groups in Sonoma County under the Sonoma County Contract, 1 of which was in a facility. For all groups, we covered 34 different topics impacting a total of 6353 individuals.
Workshops: We conducted 34 workshops with 13 topics impacting 340 people (although none targeted the API community) and distributed 271 sets of materials, including” Client Grievance Procedures,” “Advance HealthCare Directives” and the “LPS Conservatorship Handbook.”
Outreaches: We conducted 32 outreaches with a total of 1,552 attendees.
Collaborative Projects: We conducted 2 trainings in collaboration with the DDPSA program addressing the stigma and discrimination that people with multiple disabilities experience, one in the North and one in the South.
Self-Advocacy Group Highlights
GROUP MEMBERS DEVELOP THEIR OWN ADVANCE DIRECTIVES
Self-advocacy group members at the Northeast Wellness Center learned about the importance and purpose of Advance Directives in their own health care. Initially, group members were hesitant to talk about matters that they thought were only related to their own death, but then realized that Advance Directives help ensure that their wishes are respected in the event that they are unable to make their own health care decisions. With assistance and support from Rosy Tellez, a PSA staff member, group members felt empowered knowing that they could choose their own health care agents and decided to work together to develop their own Advance Directives. Once they completed them, a Notary Public attended the group to finalize and formalize their documentation.
GETTING OFF CONSERVATORSHIP
With the help PSA staff member Rob Chittenden and materials on LPS conservatorship, a self-advocacy group member at the Hope Center in Eureka was able to get off of conservatorship and move from a board and care facility into the community. As a result of her volunteer work at the Hope Center and using the PSA worksheet on “How to show you are not Gravely Disabled,” the group member worked with her public defender to convince the judge that she could take care of her basic needs. She now lives successfully in her own apartment with a roommate and enjoys the freedom of living independently.
LEARNING HOW TO DEVELOP A GRIEVANCE FORM
A self-advocacy group at Creekside in Sonoma County found that there was not a grievance form at their facility for filing a complaint when one of the residents tried to submit one. As a result, members of the Creekside self-advocacy group decided to develop their own grievance form, with the help of PSA staff member Leo Alfaro, to give them the opportunity to report their rights issues. As a result of the group’s advocacy project, they planned a workshop on completing a grievance form. In addition, they asked the Creekside Program Director to give input on the grievance form and process they developed. This is an excellent example of self-advocacy group members initiating and implementing a self-advocacy project.
THE AMERICANS WITH DISABILITIES ACT (ADA) AND EMPLOYMENT RIGHTS
PSA Program staff member Senobia Pichardo trained the self-advocacy group at “La Hora del Café” in Los Angeles about the Americans with Disabilities Act (ADA) employment provisions and distributed materials on pre-employment screening requirements so that self-advocacy group members could better prepare for job interviews. For instance, they learned that they are not required to disclose their mental health disability in order to be considered for employment. After learning the information in the self-advocacy group, one of the members sought to educate other mental health clients and provide peer support by attending a jornaleros (day laborers) meeting and teaching attendees about their employment rights. Other self-advocacy group members reported that, as a result of the PSA group, they felt more confident and secure in seeking employment because they had learned their rights.
Workshop and Training Highlights
ENCOURAGING VOTING AND CIVIC PARTICIPATION
In Sonoma County and the Inland Empire, consumers learned about their voting rights, how to register to vote and the voting process. Many clients did not know that they may still have the right to vote even if they are on conservatorship, and that if they are in a facility, they can ask staff for assistance by setting up a ride to a polling place or asking for help with registering for an absentee ballot. PSA staff arranged for 2 voting workshops presented by DRC attorney Pamela Cohen at Interlink and the Wellness and Advocacy Center in Sonoma to educate people how to find information about their right to vote and the importance of voting. In addition, PSA staff facilitated 9 voting workshops at 3 different “It’s a Brand New Day” drop-in centers in the Inland Empire for clients under LPS conservatorship who have been recently discharged from an acute care or locked facility. These trainings also provided clients with real-world examples and guidance about how civic participation and voting can directly impact their lives, demonstrating the importance of self-advocacy skills to make change happen.
UNDERSTANDING YOUR LEGAL STATUS AND HOW TO GET OUT OF A STATE HOSPITAL
PSA staff member Debi Davis facilitated a 4-week workshop for the female forensic admissions unit at Napa State Hospital. Since all residents on this unit were at the facility under the Incompetent to Stand Trial (IST) commitment, the workshop provided participants with knowledge and tools they could use to better understand their legal situation and advocate for release from the hospital. Twenty-two women attended the workshop and developed a positive working relationship with PSA and Napa State Hospital staff. Participants also learned about the Self-Help Office that is available to residents at the hospital.
REACHING OUT TO UNIVERSITY STUDENTS TO REDUCE STIGMA AND DISCRIMINATION
As part of our advocacy goals for this year, PSA staff member Lisa Hurley reached out to students in higher education by presenting a training about the causes and effects and ways to reduce stigma and discrimination against people with mental health disabilities. Given that the majority of these students, who were in a Master’s degree program for Rehabilitation Counseling at San Diego State University, would be future mental health service providers, PSA staff educated them about harmful stereotypes and provided them with tools and strategies for reducing stigma and discrimination in their work with mental health clients. Another training was provided by PSA staff member Robyn Gantsweg at the UCLA Disability Law Symposium to provide university students and staff, mental health professionals and attorneys an inside view of life in an institution and the effectiveness of the Recovery Model and peer support services in helping clients in their own recovery.
OUTREACH TO THE ASIAN-PACIFIC ISLANDER (API) COMMUNITY
PSA program staff conducted an outreach for the Asian-American Pacific Islander Coalition in San Bernardino reviewing Disability Rights California and PSA Program services. We gathered feedback about beginning a Peer Self-Advocacy Group at the Asian-American Resource Center in San Bernardino.
REDUCING STIGMA AND DISCRIMINATION AGAINST PEOPLE WITH MENTAL HEALTH DISABILITIES
In collaboration with DRC attorneys and as part of our CalMHSA Stigma and Discrimination Reduction project, PSA staff began outreach to various groups of people in the community, such as employers, mental health providers, first responders, law enforcement, landlords and people in the faith-based community, to teach them about ways they may be stigmatizing and discriminating against people with mental health disabilities in their roles as professionals. Since PSA staff all identify as mental health clients, we help guide DRC’s work in this area as a result of our own experiences with stigma and discrimination. In this way, the PSA seeks to educate, increase awareness and improve relations and communication between service providers and people with mental health disabilities.
LEGAL ASSISTANCE AND REFERRALS
The self-advocacy groups for forensic residents at both Patton and Napa State Hospitals wanted to meet with an attorney to provide them with specific legal information and assistance. As a result, PSA staff assisted group members establish an "Ask-a-Lawyer Day.” If an individual group member has a specific legal issue and seeks more detailed assistance than we can provide in a group setting, we refer him/her to the Legal Unit for an intake appointment with one of our DRC attorneys. Additional legal assistance has been provided by law students from the Bay area who attended Napa State Hospital self-advocacy group meetings throughout the year.
LEARNING ABOUT THE LEGISLATIVE PROCESS
One of the self-advocacy groups in the community wanted to learn about the legislative process, so DRC’s Legislation and Public Information Unit presented a workshop on how to identify their legal representatives and ways to impact legislation.
PREPARING CLIENTS FOR LPS COURT HEARINGS
In collaboration with DRC attorneys, a fact sheet and brochure is under development to help clients prepare for LPS court appearances, including information about what to expect at the hearing, the roles of the different court officers and how to comport themselves in front of the judge.
Systems Advocacy Highlights
CALIFORNIA MEMORIAL PROJECT (CMP)
PSA and DDPSA Program staff from Disability Rights California, in collaboration with the California Network of Mental Health Clients and People First of California, planned and coordinated the 10th annual CMP Remembrance Day ceremonies at institutions and burial sites across the state to honor people with psychiatric and developmental disabilities who lived and died at state hospitals and developmental centers. Clients and members from the community and some residents who currently live in the institutions shared their personal experiences through stories, songs and poems. Other activities included guided meditation, poem recitations, musical performers and a moment of silence followed by a symbolic release of balloons. Approximately 435 people attended the ceremonies at the following 9 sites: Agnews Developmental Center, Sonoma Developmental Center, Parkview Cemetery in Manteca, East Lawn Cemetery in Ukiah, Stockton Rural Cemetery in Stockton, 2 at Napa State Hospital (one for residents and one for the community), Patton State Hospital and Metropolitan State Hospital.
PUBLIC DEFENDER TRAININGS
As part of the joint project with the Mental Health Workgroup, PSA staff collaborated with DRC attorneys to present 2 trainings for public defenders about client needs and experiences when appearing in court. The trainings provided information about different disabilities that clients may have and potential challenges that may arise and interfere with a public defender’s representation of a client’s expressed wishes. We also discussed ways to reduce the stigma and discrimination that people with mental health disabilities often face and how it can affect the public defender’s relationship and representation of their client. We have plans to provide trainings at the upcoming annual California Public Defender’s Association conference in 2013.
WORKSHOP AT PATTON FORENSIC MENTAL HEALTH CONFERENCE
PSA Program staff member, Garnet Magnus, presented a workshop at the 19th Annual Patton State Hospital Forensic Mental Health Conference. Using a Powerpoint presentation that was developed by PSA staff, called “Peer Self/Advocacy Programs – Unique Services and Strategies for Assisting Mental Health Clients,” the training provided an overview of PSA services for approximately 85 attendees who included peer and family advocates, law enforcement, private and county mental health providers and San Bernardino’s Conditional Release Program (CONREP) staff. Approximately 200 publications were distributed, including Disability Rights California and PSA brochures, California Memorial Project Remembrance Ceremony announcements and contact information for DRC’s Los Angeles Regional Office for Patton State Hospital residents, staff, and community service providers. PSA staff also networked with San Bernardino’s CONREP staff to discuss the possibility of having an ongoing PSA self-advocacy group for new parolees.
LEARNING HOW TO PARTICIPATE ON A BOARD
In response to self-advocacy group member’s complaints that they felt their concerns and needs were not being heard nor appreciated by staff at the San Pedro Wellness Center, PSA Program staff member Senobia Pichardo worked with the members of “El Progreso” to promote their own voices and represent their needs for services by participating on the San Pedro Wellness Center’s Board. Using materials that were developed by the DDPSA program and then translated into Spanish by PSA staff, the group discussed ways to participate on the Board and play a greater role in making decisions that affect them. They also learned how to be an effective Board member and discussed strategies for resolving issues or disagreements that might arise. As a result of the training, many group members participated in their first Board meeting at the clinic and felt that their voices were heard and respected.
SELF-ADVOCACY GROUP MEMBERS GET OUT OF FACILITY
Through their participation in PSA self-advocacy group discussions and trainings, residents at the Crestwood Center in Sacramento learned strategies and skills from PSA staff member David Solis for getting discharged from the facility. Provided with information about resources for housing, medical services and local referral agencies, 3 group members got out of the facility and have moved back to their counties of origin. Their success shows the effectiveness of self-advocacy in helping clients to exercise their rights and live independently in the community.
LEARNING HOW TO GET OFF CONSERVATORSHIP
Clients who seek to get off of conservatorship are required to show proof that they are not “gravely disabled” and can take care of themselves. With information provided by PSA Program staff member Mark Olberg, many self-advocacy group members at the Crestwood Treatment Center in Redding learned knowledge and skills they needed to demonstrate to a judge in court that they are not gravely disabled. As a result of the trainings, many group members successfully completed an action plan and a form developed by the PSA program called “How to show that I am not Gravely Disabled” that they could use for their next conservatorship hearing to regain their independence and their right to make important decisions in their lives.
CALIFORNIA MEMORIAL PROJECT (CMP) SUCCEEDS AT PLACING MEMORIALS AT BURIAL SITES
The California Memorial Project (CMP) held its 9th Annual Remembrance Day ceremonies on September 19 to honor and restore dignity to people with psychiatric and developmental disabilities who lived and died at state hospitals and developmental centers throughout California. In addition to the Remembrance Day, dedication ceremonies were held for 2 memorial plaques – one at the campus of California State University-Channel Islands (former grounds of Camarillo State Hospital) and one at Ivy Lawn Memorial Park in Ventura. In addition, a large granite monument was placed at Patton State Hospital in the cemetery.