Advocacy Director’s Report

WINTER 2007—Work as of September 30, 2007

This report represents a summary of the work PAI staff has reported from August 1, 2007 through September 30, 2007. Many thanks to those who provided the material to make this report possible.

communications

Press Releases Issued this Quarter on the victory of Capitol People First v. DDS, California state hospital memorials and PAI v. City of Buena Park.

September 25—announcing the significant victory of the decision of the Court of Appeals, establishing that a PAI flagship case- Capitol People First v. Department of Developmental Services –will now proceed as a class action on behalf of more than 7000 institutionalized Californians;

September 17—to promote recognition and attendance of the seven sites around the state holding memorials in honor of thousands of Californians who died in state hospitals or developmental centers;

August 31—to announce PAI’s lawsuit against the City of Buena Park on behalf of group home residents. Ann Menashe of the San Diego office is lead attorney.

As a result of the widely distributed press releases, and the promotional work of the 3 sponsoring organizations, California Network of Mental Health Clients, People First of California and PAI, attendance at the California Memorial Project events far eclipsed previous years.

PAI Staff: Barb Duncan, Eric Gelber, Rob Chittenden, Ann Menashe
Grant/Funding Source: Trust Fund

PAI is covered in Mainstream and Disability Media.

During August and September, the primary focus of coverage was an on-going analysis of the spiraling costs of the Laguna Honda rebuild. In three instances, PAI was able to position itself as an expert not only on the expense of the rebuild but to articulate its position that the funding would be far better spent on community-based housing and other services in San Francisco.  Consistently, the news peg or lede has been the “astronomical costs,” but PAI has been successful at expanding the issue to include consideration of what the LHH model says about a progressive city, especially as it reverses a national trend towards deinstutionalization.

Highlights were:

·       August 28—PAI attorneys Elissa Gershon and Elizabeth Zirker described the advantages of community-based services in terms of equity and anti-discrimination efforts in the City Star and KCBS News.

·       August 31— PAI attorneys Elissa Gershon and Elizabeth Zirker described the advantages of community-based services in terms of equity and anti-discrimination efforts in the San Francisco Business Times;

·       September—PAI’s director of litigation for Southern California, Andrew Mudryk, featured in a 15 minute broadcast interview by the Insider Exclusive, a television program that explains legal issues to the public. Mudryk concentrated on examples of how PAI monitors abuse and neglect, and works to reduce discrimination against Californians with disabilities. Insider Exclusive has been featuring the work of non-profits that provide legal advocacy to under-represented groups and PAI was one of the first organizations selected for the series.

PAI Staff:  Barb Duncan, Elissa Gershon, Elizabeth Zirker and Andrew Mudryk
Grant/Funding Source:  Trust Fund

New Website Features.

New PAI website features introduced during this period include:

·       Recommended reading feature: Numerous staff are contributing to this new feature on the homepage, resulting in wider awareness of research reports, such as the Blue Ribbon Commission on Autism and the GAO investigation into treatment of wounded veterans; in political developments such as the threat of cutting transportation for children with disabilities from Medicaid; and in disability culture events, such as the broadcast of more than 40 disability films on California’s public television stations during October for disability awareness month;

·       The Peer/Self-Advocacy Unit developed a new illustrated homepage and full description of its recent activities

During this period, all planning and review of web pages for the new Spanish language website was completed by Barbara Silva, Jesse Magano & Barb Duncan for a November 5 launch.

PAI Staff:  Barbara Duncan, Rob Chittenden, Alicia Mendoza, Jenny Olsen, Barbara Silva, Jesse Magano
Grant/Funding Source:  Trust Fund

PAI staff, Board & publications featured on homepage:

During this period, short reports by staff members about external events with PAI involvement included:

·       A summary by Attorney Maggie Roberts about the state summit on those with dual diagnosis of mental health and developmental disability;

·       Field reports by Rob Chittenden, coordinator of the Peer Self-Advocacy unit, about results of the California Memorial Project events of September 17;

·       An announcement of the 80 page update on Community Living in California, prepared by Attorneys Ellen Goldblatt and Sujatha Jagadeesh Branch for presentation at the annual Supported Living Conference;

·       An illustrated tribute to former board chair Bill Compton, contributed to by a Los Angeles Times columnist and by the PAI executive director and board, was featured on the homepage during September.

PAI Staff:  Barb Duncan, Maggie Roberts, Rob Chittenden, Ellen Goldblatt, Sujatha Jagadeesh Branch, Catherine Blakemore
Grant/Funding Source(s):  Trust Fund

Website visits show strong interest in special education rights & services

Website visits slightly decreased during the August vacation period to 15,314 and picked up again in September to 15,751 visits by individuals. Consistently, the top 3 draws were: homepage news (around half the visitors or 7500) publications (around 2000 visits) and jobs (around 1800) each month.

In the August—September period, more than 4000 visitors downloaded some or all of the PAI publication, “Special Education Rights & Responsibilities,” and more than 1000 visitors a month visited the special education section of the website. The next most popular publication on the website is “Filing Claims against Public Entities under the California Tort Claims Act,” which was accessed nearly 900 times during this period.

PAI Staff:  Barb Duncan
Grant/Funding Source(s):  Trust Fund

LEGISLATIVE ACTIVITIES

Legislative activities are current at the time this report is prepared, however, the legislature moves quickly and things can change overnight, so for the most current information on bills or other activities reported here, check PAI’s legislative website: http://www.pai-ca.org/legislature/2007legislation.htm

PAI Sponsored Legislation Signed by the Governor. 

During the legislative year, PAI sponsored AB 1410.  The legislation requires the state to apply to the federal government for a Medicaid waiver to provide more services to people with traumatic brain injury (TBI). Each year an estimated 22,000 Californians sustain a TBI from violence, athletic injuries, motor vehicle accidents, military service or other causes. However, California offers very few services for this rapidly increasing population.  The state has never applied for available federal home and community-based waiver services money which 25 other states already receive. AB 1410 is a very modest bill, aiming to serve 100 Californians with TBI, using already-appropriated state money as a match to the federal funds.

During August and the first weeks of September, the California Health and Human Services Agency negotiated with PAI over the provisions of AB 1410. While PAI took many amendments, most were solely technical and none diminished the legislation. The legislative cost estimate of the bill, initially overestimated by state staff, finally descended to the amount PAI staff initially specified. During the final negotiations, the bill received final votes in the Senate Committees, picking up non-partisan momentum. The governor signed the bill on October 14, 2007. 

PAI Staff: Deborah Doctor
Grant/Funding Source(s):  Equal Access

Other Key Legislation in 2007

PAI took positions on 115 bills during the legislative year.  Of the total, 48 have made it to the Governor’s desk. Representative legislation included:

AB 8 is the Nunez-Perata “health reform” legislation, which creates the Cooperative Health Insurance Purchasing Program as a statewide purchasing pool for health care coverage by employers. PAI opposed the bill because of concerns about cost, availability, scope of coverage and accessibility.  The bill was vetoed by the Governor.

AB 1427 (Krekorian) requires the Department of Developmental Services to establish a pilot program to incentivize, reimburse, and assess the use of recognized training resources for direct support workers in consumer directed services.  PAI worked to get this bill passed, but unfortunately the Governor vetoed the bill.

AB 66 (Dymally) requires HIV testing for every inmate entering a correctional facility, state prison, or state hospital, unless the testing is declined. PAI objected to the bill’s lack of privacy safeguards.  The bill was held in Senate Appropriations Committee.

AB 1663 (Evans) makes revisions conforming state law to federal requirements relating to pupil identification, assessment, and eligibility, individualized education program development, procedural safeguards, and pupil information confidentiality. PAI opposed this bill because it will disrupt the continuity of services during a crucial period of a child’s development.  This bill unfortunately made it through and has been enacted.

AB 1723 (Assembly Judiciary Committee) enhances the program known as “IOLTA” – Interest on Lawyer Trust Accounts, which is the major source of funding for legal services programs for low-income people in California.  PAI supported this piece of legislation and it made it through the legislative process and has been enacted.

SB 568 (Wiggins) relates to existing law requiring a court-appointed psychiatrist to examine a defendant found to be mentally incompetent and decide whether or not treatment of the defendant with antipsychotic medication is appropriate and to notify the court. It requires the psychiatrist to inform the court whether it is medically appropriate to administer antipsychotic medication in a county jail. PAI opposed this bill because county jails are not appropriately equipped to deal with the needs of individuals with psychiatric disabilities, nor the appropriate placement.  It has been enacted.

AB 759 (Karnette) requires residential care facilities for the elderly, licensed to care for not more than six residents, to have an approved, operable automatic fire sprinkler system. PAI opposed this bill because it placed a requirement on housing for people with disabilities that is not imposed on other residential homes and it may reduce availability of housing.  The bill was held in Senate Human Services Committee.

SB 2 (Cedillo) decreases the local land use barriers that hamper the establishment of emergency shelters, supportive housing and transitional housing and emergency shelters.   PAI supported this bill and it has been enacted.

PAI Staff: Evelyn Abouhassan, Deborah Doctor, Margaret Johnson, Brandon Tartaglia
Grant/Funding Source(s): Trust Fund, Equal Access

Healthcare Reform: The Debate Continues

The healthcare reform debate marched to and beyond the legislative finish line – adjournment.  PAI did not support any of the competing bills because they did not comport with our legislative principles related to healthcare reform, but worked in coalition with disability and health advocacy organizations to push improvements.

AB 8 passed but the governor vetoed the measure. During the special session, which he called immediately, the governor presented language for his own health care reform plan but has not introduced legislation.  Thus far, the administration has taken no disability related suggestions.  Staff continues to work with other advocates to improve provisions affecting people with disabilities and people with low income.

PAI Staff: Deborah Doctor
Grant/Funding Source(s): Equal Access

LPIU Staff Attends and Participates at Conferences and Committee Meetings 

Olmstead Meetings: Staff attended the August quarterly meeting of the Olmstead Advisory Committee. Staff from the Department of Health Care Services gave a report about difficulties with implementing PAI sponsored legislation, SB 634 (2005). This prompted plans for a meeting that will happen in early November to address the issue.

Home and Community Based Services Conference: Staff attended the 23rd Annual Home and Community Based Services Conference, sponsored by the National Association of State Units on Aging. The four-day conference was intense and well-attended, and included speakers from some of the states that are innovating and leading the way in community-based long-term care.

People First Regional Meeting:  LPIU staff prepared materials and presented at the regional meeting of People First. At that meeting, staff provided a legislative update on the happenings at the state capitol with respect to issues of importance to persons with developmental disabilities.  Staff also spoke about the importance of individual advocacy and provided meeting attendees legislative advocacy tips.

PAI Staff:  Evelyn Abouhassan, Deborah Doctor, Margaret Johnson, Rob Chittenden
Grant/Funding Source(s): Trust Fund, Equal Access

Education on the Dangers of Seclusion and Restraint

During the quarter, PAI legislative and investigations unit staff worked to educate members of the legislature and their staff on the dangers of using seclusion and restraint practices in school settings.  PAI staff met with key legislative staff to discuss PAI’s investigative report about restraint and seclusion in California schools.  PAI staff discussed the need for policy reform including recommendations to restrict the use of restraint and end seclusion practices.

PAI Staff:  Evelyn Abouhassan, Leslie Morrison
Grant/Funding Source(s): Trust Fund, Equal Access

PAI in Legislative Roundtables Chaired by Assemblyman Jim Beall

Assembly Member Jim Beall, Jr., Chair of the Assembly Human Services Committee, is reaching out to consumers, their families, service providers, and program administrators to help him identify how to "take the Lanterman Act into the future. On August 28, 2007, Mr. Beall held a roundtable discussion in the Capitol at which, after short presentations on the current state of the program and future needs, he solicited opinions on how the Act may need to be updated to expand choices and opportunities for consumers and their families. 

PAI Director Catherine Blakemore represented PAI at this roundtable. A second Roundtable was held on October 3rd focusing on ways to strengthen the IPP process, better serve consumers and families of color, and the use of outcome and performance measures for assuring quality in the delivery of developmental services. Ellen Goldblatt represented PAI on the IPP and outcomes issues and submitted PAI's written suggestions on how to improve the IPP process. ThoVinh Banh represented PAI on the issue of how to better serve consumers from diverse ethnic and racial communities and submitted a written statement on this issue.

On October 24th and November 16th Mr. Beall will hold Assembly Human Services Committee hearings in Sacramento and San Jose, respectively, to further focus on needed program improvements and preparing for the Lanterman Act for the future. PAI will participate.

Lanterman Act, Goals 2 and 3, Objective B
PAI Staff: Ellen Goldblatt, ThoVinh Banh -- many other workgroup members contributed to this process.
Grant/Funding Source(s):  EA, PADD

LPIU Staff Participates in Outreach Events

Staff conducted outreach to people with psychiatric disabilities on the importance of voting and how the legislative process works. In a series of presentations at Turning Point, staff presented information and answered questions in order to get clients interested in and actively involved in the governmental process, legislative advocacy and voting.

At an outreach at the Sacramento Valley AIDS walk, LPIU staff gave out information about PAI, provided information about PAI’s publications, and spoke about the services that PAI provides.

PAI Staff: Suzanna Gee, Leilani Pfeifer, Evelyn Abouhassan, Brandon Tartaglia
Grant/Funding Source(s): Trust Fund, Equal Access, PAIMI

SELF ADVOCACY ACTIVITIES

COLLABORATIVE PROJECTS

Civic Involvement Project in El Dorado County Focuses on Transportation

Collaborative Projects helps people with disabilities develop statewide or local advocacy projects.  See Advocacy Director Report Summer 2007 for more background information about Collaborative Projects.

Collaborative Projects has focused on creating the Community Involvement Project.  The Community Involvement Project’s purpose is to bring together people from different disability communities to advocate for changes on an issue affecting everyone with disabilities and encourage more civic involvement.  People chose public transportation as the first issue to work on.

In August, Community Involvement Project members in South Lake Tahoe met with the Tahoe Regional Planning Agency (TRPA) and Area Transit Management (ATM) staff for a follow up discussion about the Unmet Transportation Needs public hearing held on June 5th in South Lake Tahoe.  Of particular concern is that there are no Paratransit services which violates the Americans with Disabilities Act (ADA).  Project members have requested a timeline for the transportation services to become ADA compliant.

Others involved in the project focused on transportation between South Lake Tahoe and the Carson Valley in Nevada.  Many members have doctors and other health care providers in that area.

In September, Community Involvement Project members attended the Area Transit Management Board of Directors to ask questions about changes in the transportation system to establish Paratransit services.  Project members submitted comments on the draft Unmet Transportation Needs report developed by the transit agency after the June public hearing.  Others worked to identify organizations and people to contact in the Carson Valley area who would be interested in working on public transportation between South Lake Tahoe and the Carson Valley.

In October, Community Involvement Project Members met to review the changes in public transportation in South Lake Tahoe.  They identified concerns about the proposed paratransit services and identified a smaller group to develop a strategy for addressing their concerns.  They plan to meet with the owner of the Area Transit Management Company and the program manager at Tahoe Regional Planning Agency.

PAI Staff: Nakida Gooden, Lori Shepherd, Margaret Johnson
Grant/Funding Source(s): PAVA, Trust Fund

Developmental Disabilities peer self advocacy

DDPSAU Empowering Through Trainings and New Material Development.

Unit staff provided several trainings and outreaches on a variety of topics such as; IPP Rights, Civic Participation, Voting, Effective Self Advocacy,  and Self Directed Services to  people in groups such as Thumbs Up in Sonora, Apoyo de Padres in Sacramento, Grass Valley People First, Toolworks in Oakland, Bay Area People First Self Advocacy Conference, The Self Advocacy Coordination Project, Seirra Vista intermediate care facility in Yuba City, People First in Alameda and Goodwill in Sacramento.  Unit staff also collaborated with PAI legal and multi-cultural affairs staff to provide outreach and training to a group of tribal representatives in Oroville on voting rights, civic participation and regional center services.

DDPSAU staff finalized development of an abuse prevention training presentation and a user friendly voting rights game which is modeled in the style of the “Family Feud Game”.   Development of training materials on rights within relationships over the life span, voting rights, IPP rights, employment re-entry options and additional abuse prevention materials also occurred this quarter.

Developmental Disabilities Peer Self Advocacy, Goal 1, Objectives 1 & 2
PAI Staff: Marinda Reed, Maria Marquez and Daniel Meadows, Phyllis Preston, Leilani Pfeifer
Grant/Funding Source(s): PADD/ PAVA

DDPSAU Provides Peer Advocacy Services to People Living in Developmental Centers.

Unit staff provided necessary self advocacy to plaintiffs of the Capital People First litigation.  Staff visited clients at three developmental centers.  One outcome of these visits was that, JW wanted peer advocacy services in order to prepare for living in the community after he leaves the developmental center and to strengthen his self advocacy skills.  In addition the visits provided an opportunity for staff to outreach to others living in the developmental centers and set up future training opportunities.

Developmental Disabilities Peer Self Advocacy, Goal 1, Objective 3
PAI Staff: Marinda Reed, Sujatha Branch, Barbara Dickie, Maria Marquez, Jonathon Ellison
Grant/Funding Source(s): PADD

DDPSAU Liaisons with Self Advocacy Groups Continues

The DDPSAU maintains liaison relationships with a number of other regional, state and national stake holder and self advocacy organizations such as People First of California, NDRN Consumer Advisory Committee, The Self Advocacy Coordination Project, Bay Area People First, Golden Gate Regional Center Guidance Team, Capitol People First and Alta Regional Center Consumer Advisory Committee.  Staff are working with Capital People first to revise the publication “Your IPP - It’s Not Just a Piece of Paper” and recently established a work plan to ensure the publication is updated quickly.  Staff are collaborating with Sacramento People First to increase outreach to young adults and youth groups and to adapt materials to be user friendly.

Developmental Disabilities Peer Self Advocacy, Goal 1, Objective 5
PAI Staff: Marinda Reed, Maria Marquez and Daniel Meadows
Grant/Funding Source(s): PADD

PEER SELF ADVOCACY

Creekside Self Advocacy Group Members Attend Conference and Advocate for Themselves

PSA staff provided training to and worked with members of the Creekside Self Advocacy Group. As a result of these efforts group members had a number of accomplishments including the following:

·       Six residents at the Creekside Self-Advocacy Group wanted to attend a local client sponsored training about developing client leadership with Dan Fisher of the National Empowerment Center.  Through their advocacy they were allowed to attend without staff presence.

·       The self-advocacy group members successfully argued for a longer time limit on the use of the facility’s one computer in order to complete more computer related activities and access more information when using the computer. 

·       As a result of the things learned in the self-advocacy group, several residents were successful in gaining third party assistance and were released from conservatorships.  Third party assistance under the Lanterman Petris Short Act allows family and friends to help a person provide for their food, clothing, and shelter and thus a conservatorsip is not necessary.

Peer/Self Advocacy, Goal 4, Objective B
Peer/Self Advocacy Staff: Sharon Schmidt
Funding Source: PAIMI

Canyon Manor Self Advocacy Group Members Advocate for Themselves and for the Group

PSA staff provided training to and worked with members of the Canyon Manor Self Advocacy Group. As a result of these efforts group members had a number of accomplishments including the following:

·       Two residents successfully demonstrated they were not gravely disabled and were granted independent living situations by their counties and taken off conservatorships.

·       Two transitional aged youths advocated with their conservators and social workers and were given housing in a Transitional Age Youth Program in the county.

·       The self advocacy group successfully advocated for residents on all level systems, which is the system of gaining more privileges and more access to the community, to go on community outings.

Peer/Self Advocacy, Goal 4, Objective B
Peer/Self Advocacy Staff: Sharon Schmidt
Funding Source: PAIMI

PSA Staff Provided Training and Outreach in Stockton, Grass Valley, and Sacramento

PSA staff collaborated with PAI legal staff from the Sacramento regional office and met with residents at Crestwood Stockton to discuss the PASSR process and to find out what services or information they had received through the PASSR process.  PASRR is a federally mandated screening and evaluation tool that is used to assess people with mental illness or developmental disabilities who are being considered for nursing facility placements to determine if nursing facility placement is appropriate or if these individuals can be better served in a more integrative setting. The evaluation also determines if the individual needs specialized services to address his/her disability. PASRR is also used to re-assess the needs of existing nursing facility patients whose conditions have changed or stabilized.  Information about the Peer/Self Advocacy Unit and the services PSA provides were also discussed with residents.

PSA staff gave a training on “Working while receiving Benefits”, a Social Security workshop, at Spirit Recovery Empowerment Center, a client-run center, in Grass Valley.

PSA staff provided information about PAI services and PSA services to Wellness Recovery Center, a client-run center, in Sacramento.

Peer/Self Advocacy, Goal 2, Objective A
Peer/Self Advocacy and PAI Staff: Karyn Farr and Sean Rashkis
Funding Source: PAIMI

Napa Self Help Office Collaboration Continues With Boalt Law School

The Napa State Hospital/ Boalt Law School collaboration is in its third year.  Legal staff from the Oakland regional office, PSA staff, and a graduate from Boalt are working with Napa administration to have different self advocacy group meeting times to allow for more law students to attend the groups.  This collaboration has been successful because Napa residents have gained more legal information and law students who are interested in disability law issues are able to gain experience in mental health law.

 

Peer/Self Advocacy, Goal 2, Objective A
Peer/Self Advocacy and PSA Staff: Steve Rosenbaum, Pam Cohen, and Amy Breckenridge
Boalt Graduate: Erin Orzel
Funding Source: PAIMI

Woodlake Woman’s Association “Asociacion de Mujeres de Woodlake” Works to Improve Community

PSA staff provided training to and worked with members of the Woodlake Woman’s Association. As a result of these efforts group members had a number of accomplishments including the following:

·       Three members from the self advocacy group have joined the local Poder Popular Health Council and participated in discussions with representatives from Southern California and Mexico on issues ranging from access to health services to competency of local mental health service providers.

·       Group members joined the Chief of Police, City Council Members, members of the Woodlake School District and representatives from various Community Based Organizations in an advisory committee to improve the cultural competency of the services provided by these entities to people with mental health disabilities.

·       The group worked to improve housing conditions and advocacy for fair treatment of tenants with disabilities by working with administrators of the two largest apartment complexes in Woodlake, to ensure they complied with fair housing requirements.  The result of their work is that all residents of the complexes are treated fairly.

Peer/Self Advocacy, Goal 2, Objective A and Goal 4, Objective B
Peer/Self Advocacy Staff: David Solis
Funding Source: PAIMI

PSA Unit Staff Provides Four Outreaches in Southern California

PSA Staff and PAI legal staff from the Los Angeles regional office met with the president and other members of the Los Angeles Client Coalition to discuss ways in which we could assist one another and provide PAI’s services.  PAI and PSA staff regularly attend Los Angeles Client Coalition meetings, but found that most of the meeting time was spent on the election of officers and group process, making it difficult for us to help clients.  We agreed that time would be set aside at each Los Angeles Client Coalition meeting so that PAI staff could present advocacy information and meet with clients.

PSA staff has been meeting with the director of Un Paso Mas, which is part of Project Return, peer support network, to arrange for self-advocacy workshops for the Spanish-speaking community members of the project. Some topics to be covered include "What is Self Advocacy", "How to Get Out and Stay Out of the Hospital" and "How to Talk with Your Doctor” as well as other frequently requested PSA topics.

PSA staff and PAI multicultural affairs staff had a PAI booth at the Ventura Pride Festival on August 25, 2007 for the LBGTI community. There was a lot of interest, especially from older adults, about PAI services in the areas of obtaining public benefits or other services, such as IHHS.

Peer/Self Advocacy, Goal 2, Objective A
Peer/Self Advocacy Staff and PAI Staff: Robyn Gantsweg, Senobia Pichardo, and Rosy Tellez, Carman Varela, Matthew Fischler
Funding Source: PAIMI

The California Memorial Project Activities

PSA Resolves Concerns about Cemetery Site Disturbances at Patton State Hospital

There have been disturbances at the Patton burial site, so the Patton California Memorial Project (CMP) team met with the head of plant operations to verify that the cemetery grounds were not disturbed.  The CMP team was given historic maps from the 1970's and 1930's documenting the cemetery site. As a result of the collaboration over the location of the cemetery site, CMP project members held a remembrance ceremony at the site.

Peer/Self Advocacy, Goal 10, Objective A
Peer/Self Advocacy Staff and California Memorial Project Members: Alicia Mendoza, Garnet Magnus, and Linda Thompson
Funding Source: PAIMI

PSA & DDPSA Participate in Remembrance Ceremonies Held at Seven Sites

On September 17th the California Memorial Project which consists of members from the Peer/Self-Advocacy Unit of Protection and Advocacy, Inc., The California Network of Mental Health Clients and People First of California celebrated their 5th annual Remembrance Day Ceremony.  The Remembrance Ceremonies are to honor, respect and give dignity to our peers who have lived and died at State Hospitals and Developmental Centers unrecognized.

This year the ceremonies were dedicated to the memory of Karen Zimmer, who died from cancer this past year.  Karen served on the Client Network of Mental Health Clients Board of Directors and in 2006 was elected President of the Board.  She was the first Network staff coordinator for the California Memorial Project.  She was a friend and peer and will be missed by all who knew her.

Highlights from the ceremonies around the state include the following:

Patton Ceremony, Patton State Hospital auditorium

As the mistress of ceremonies, Garnet Magnus welcomed the 61 guests and paid a special tribute to Carlos Luna, Director of Patton State Hospital, Cindy Barrett-Administrative Assistant/Public Relations and staff for all their assistance and cooperation in preparation for the ceremony.  She gave updates concerning the Patton Cemetery grounds.  The purpose of AB1448 and ceremony was summarized by Georgia Degroat, Far South Director for California Network of Mental Health Clients. Paul Mansell, President of San Diego People First, spoke about clients and others involved in the mental health advocacy movement.

Linda Thompson, Secretary of People First of San Diego County, presented a memorable personal story about her life with Cerebral Palsy.   Linda has a B.A. degree in Journalism and an M.S. in Rehabilitation Counseling and is a role model on how to achieve goals.  She reflected on how over 2000 residents died and were buried at Patton in poor conditions and anticipated the day when all the grounds at state hospitals and developmental institutions are restored with respect and honor.

The guest speaker was Sue Moreland, CEO of Jefferson Transitional Programs, West/Mid County Riverside County, who spoke about how Patton Hospital is utilizing a model recovery program.  Jerry Wengeld, Mental Health Director for Riverside County, was applauded for taking time to participate in the CMP Remembrance Day Ceremony.

Larry Bear Rivera, Indian Affairs Chaplin, spoke movingly about Indian Natives buried at Patton cemetery.

Joe Nelson and his television crew got some great footage of the team placing flowers at the cemetery site, and interviewed Garnet and Jerry Wengeld.

Agnews Ceremony, Agnews Developmental Center, San Jose

This year the California Memorial Project Ceremony had approximately 200 people in attendance.  The CMP Team members were Alicia Mendoza, Maria Marquez and Yvonne McGough from Protection and Advocacy.  Photos were taken by Barbara Duncan of PAI.  The CMP team was assisted by Agnews staff Ruth Ritchy and Kathleen Lee.  The location of the ceremony was in the center courtyard of Agnews, which had a small stage.  The podium, microphone and refreshments were provided by Agnews. 

Maria Marquez kicked-off the ceremony, introducing Angela Vrbance-Libby, Executive Director of Agnews.  Angela welcomed all to Agnews and expressed support for the CMP, followed by Alicia Mendoza who gave an in-depth history of the CMP.  Poems were read by Yvonne McGough and Maria Marquez.  Interspersed throughout the ceremony were dances and songs by the Cambodian Children Christian Choir.  Advocates who offered remembrances included Julie Wilsted, a prior resident of Agnews, Joe Francisco and Jim Fields.

Finally, everyone took part in the moment of silence, followed by the CMP team distributing flowers, which were later delivered to the cemetery.

Napa Ceremony, Napa State Hospital

About 60 individuals gathered by the old Oak tree at the entrance to Napa’s burial grounds at 10:30 on September 17.  Advocates, activists, clients, staff, mental health officials and family members came together to honor those who had ended their lives at the state facility and to share the healing of coming together as a community to commemorate. 

Bill Holland, the Department of Mental Health’s representative on the Memorial Project, gave a stirring talk in which he acknowledged the past practices of the Department would no longer be tolerated today.

Bill Waters and Frank Smith discussed the history of the Project and the fight against stigma in and outside the system.

Among the speakers were Kathy Trevino and Lou Williamson, who recounted their journeys through state hospitals to where they are today; two women who told the stories of family members who had been in Napa in an earlier era, stressing how much it meant to them to come and honor their loved ones; an artist and poet from Santa Rosa who showed her picture “Napa, Sun, Napa Moon,” which she created for the ceremony; and three clients from Napa State Hospital, who showed us how far we have to go.

Sally Zinman, retiring director of the California Network of Mental Health Clients, spoke about the powerful bond within the Self-Help movement that helps members to go on and have courage.

Laurel Mildred, the California Network’s new Executive Director, focused on how to improve Napa State Hospital’s treatment of clients today; and Nancy Thomas, the Network’s President, provided inspiration through songs. A flock of wild turkeys stood on the periphery of the cemetery, raising their heads as if to acknowledge the Spirit in us all.

Karyn Farr of PAI organized and coordinated every detail of the ceremony. 

Sonoma Ceremony, Sonoma Developmental Center

The ceremony was attended by 67 individuals, many from outside of the Sonoma Developmental Center (SDC) network, demonstrating substantial community interest to begin restoration and participate in the task force. Thanks were expressed to the Director of SDC and the Assistant Director, who were extremely helpful in preparing for the ceremony.

The program featured presentations by Ruth Shelton and Laura Lee, Peer Self Advocates, members of Capital People First, and past residents of SDC, who described changes over 80 years and expressively articulated the benefits of their current less restrictive community placements; Roy Crew, who spoke about “Honoring Our Own”; John Ellis of the State Department of Developmental Services and a member of the California Memorial Project Task Force, who gave an update of the Napa and Stockton project sites and funding difficulties; and readings of poems by clients of Interlink Self Help Center.

The ceremony was held in the SDC gazebo, surrounded by doves made by residents and staff. A harpist and flutist brought warmth to the ceremony, which concluded with a release of balloons by residents as a remembrance of someone special in their lives. Refreshments were served and provided by SDC.

Marinda Reed of PAI’s Developmental Disabilities Peer/Self-Advocacy Unit was recognized for her help and guidance throughout the Ceremony.

Metropolitan State Hospital Ceremony

Approximately 75 people attended the Metropolitan State Hospital ceremony, many of whom arrived early to network about the CMP and to get updated on developments. About 30 were hospital residents and the others were staff of the hospital, representatives of the three sponsoring organizations and of NAMI, as well as a representative of Senator Calderon’s office.

Catherine Bond served as mistress of ceremonies, and moderator for the open microphone session. Many hospital residents came up to honor friends and loved ones who died while living in institutions. PAI staff had the opportunity to talk to residents and have lunch with them after the program ended.

A moment of silence was observed and a special dedication was made to honor Karen Zimmer and Bill Compton, our peer advocate pioneers.

Participants were given commemorative CMP bracelets that read “Honoring our Own” and commemorative T-Shirts reading “...reclaiming our own by honoring our past”. It was a great success and wonderful serene ceremony, thanks to all our committee members, attendees and volunteers.     

 Mendocino State Hospital Ceremony, Ukiah

There were approximately 50 individuals that gathered at Ukiah’s two burial sites.  The attendees included consumers, advocates, activists and family members joined together to remember those that passed away while at Mendocino State Hospital.

Kevin Murphy, from “A Healing Cooperative” and local representative for Ukiah, opened the ceremony by introducing a few people that that made it all possible. Participants sang “We Shall Overcome”.

Featured on the program were Rob Chittenden of PAI and the CMP Task Force, who spoke about the progress of the restoration of Napa and Stockton sites;  Kevin Murphy, who gave exciting news of the starting of Ukiah’s Restoration Team and the progress that has already been accomplished; two women consumers,  each of whom wrote and recited their poems; a poem dedicated to Karen Zimmer; Glade Marshall, who performed a song that he wrote specifically for the California Memorial Project; Marvin, a family member also shared a song in remembrance of his grandmother; and a  consumer member of the Mendocino State Hospital Restoration Team, who reported on donations to be made by the cemetery for restoration.

Rob Chittenden closed with a moment of silence for all people who still may be forgotten in institutions today.

Stockton State Hospital Ceremony

More than 150 people gathered at the Stockton Rural Cemetery on the morning of September 17 to remember those who lived and died at Stockton State Hospital. The Remembrance Ceremony began with haunting bagpipe playing by Bob Clemons and a welcoming from the master of ceremonies, Tim Cabral of Person Centered Services and Self-Advocacy Council VI.

David Solis, a CMP representative and PSA coordinator, spoke about the project to remember those who lived and died in California state hospitals and also said a few words about Karen Zimmer, a dedicated clients’ and disability rights activist, who passed away earlier this year.

The program had many speakers including Bruce Hopperstad, Director of San Joaquin County Mental Health Services and Daniel Meadows, PAI DDPSA Coordinator.  Between speakers, the Person Centered Services (PCS) Choir sang and participants were given the chance to say a few words of expression. Consumers, service providers, family members and community members used this opportunity to talk about what the Remembrance Ceremony means to them, why it’s important to gather annually at these sites, reflections on living in an institution and the future of the disability rights movement.  

At the conclusion of the program, hundreds placed their flowers near grave markers as the PCS Choir sang Amazing Grace, followed by a moment of silence. Refreshments and snacks were provided by Tuolumne People First and the Tuolumne County Food Bank.

Peer/Self Advocacy, Goal 10, Objective A
Peer/Self Advocacy and Developmental Disabilities Peer Self Advocacy Staff: Alicia Mendoza, Karyn Farr, Sharon Schmidt, Amy Breckenridge, Yvonne McGough, David Solis, Gabby Morales, Garnet Magnus, Senobia Pichardo, Rosy Tellez, Sheryl Bradford, Martha Cook, Rob Chittenden, Maria Marquez, Daniel Meadows, Marinda Reed, and Jenny Olson
Funding Source: PAIMI and PADD