Advocacy Director’s Report

FALL 2007—Work as of July 31, 2007

This report represents a summary of the work PAI staff has reported from May 1, 2007 through July 31, 2007. Many thanks to those who provided the material to make this report possible.

communications

Press Releases Issued this Quarter on Ashley, Adoptive Assistance, Restraint and Seclusion in Schools, and Airport Assistance.

May 8—in support of its investigative report on how the “Ashley Treatment” violated state law, PAI’s executive director publicly congratulated the Washington state P&A for its outstanding work, noting the importance of maintaining bodily integrity of children with disabilities;

June 8—in reaction to the May revise of the Governor’s Budget calling for a flat rate of reimbursement for families adopting children with disabilities, PAI’s Legislative & Public Information Unit alerted California reporters to how this would create financial hardship for those adopting children with the most serious disabilities;

June 11—a nationwide announcement was made launching PAI’s investigative report into restraint and seclusion in California schools, recommending restriction of restraint and ending of seclusion practices;

June 28—PAI’s Los Angeles office joined other disability rights organizations in demanding more training for airport employees on how to provide safe and dignified service to passengers who use wheelchairs.

PAI Staff: Barbara Duncan

Grant/Funding Source: Trust Fund

PAI is Covered in Mainstream and Disability Media.

PAI’s role in advancing the rights of Californians with disabilities was featured at least 10 times in the press and on public radio during this quarter. Main focuses were the impact of a Supreme Court decision supporting the rights of parents to represent themselves in special education lawsuits; placing the spotlight on successful transfers from institutional to community life; positioning PAI as an expert resource on restraint and seclusion; and turning up the heat on the Los Angeles school authorities for misspending the millions of tax dollars required by PAI’s successful court case to make facilities accessible.

Highlights were:

· May 25—PAI attorney and parent Steve Rosenbaum was the leading discussant on public radio station KQED’s Issues Forum, explaining to numerous callers how a recent Supreme Court decision could help parents of students with disabilities who could not afford to hire lawyers to resolve educational issues;

· May 27—PAI peer advocate Maria Marquez and attorney Ellen Goldblatt were quoted in depth by Inside Bay Area papers in a feature about adults who had moved from the soon-to-be-closed Agnews Developmental Center into small northern California residences;

· May 30 and July 9—Both the Sacramento Bee and the Wall Street Journal cited PAI attorney Leslie Morrison and the investigative unit for work on restraints and seclusion. The new report on these practices in California schools was then featured as a lead story in three national disability rights periodicals: Inclusion Daily Press, Justice for All and the Monday Morning report;

· May 31—the Los Angeles Times and the LA Daily Journal gave front page coverage to a court ordered review and audit, finding that a decade after PAI’s landmark lawsuit, and millions in funding, most LA schools are still seriously out of compliance with accessibility standards. Executive Director Catherine Blakemore was quoted, noting the difficulty of introducing inclusion while the barriers of inaccessible restrooms and lunchrooms remain;

· In addition, attorney Eric Gelber was successful in placing two Letters to the Editor in May, one to the Sacramento Bee calling for an “end to the archaic and inequitable system” of billing families for the costs of involuntary placement in state mental hospitals; and one to the Fresno Bee, pointing out that an otherwise excellent article about employment of a woman with developmental disabilities had been marred by labeling her as “having the mind of a child.” Many PAI staff members believe that this persistent representation of adults with developmental disabilities as perpetual children is among the most damaging of media stereotypes.

PAI Staff: Steve Rosenbaum, Maria Marquez, Ellen Goldblatt, Leslie Morrison, Barbara Duncan, Catherine Blakemore, Eric Gelber

Grant/Funding Source: PADD, PAIMI, Trust Fund

New Systems to Increase & Monitor Media Coverage of PAI Put into Place this Quarter.

During this quarter the new media protocol was put into effect for a trial period of six months, in an effort to better project and track PAI’s messages in the mainstream and disability media. We have also subscribed to and tested use of a media management company, eNR services, which automatically distributes electronic press releases and short newsletters to up to 2500 addresses at a time. Currently, PAI lists of California and national media contacts are being organized within eNR’s larger database.

PAI Staff: Barbara Duncan

Grant/Funding Source: Trust Fund

Website Development Progresses.

The public PAI website continues to increase readers, resulting in more than 72,000 page views in the June-July period. New website features introduced during this period include:

· PAI staff directory and updated Board directory

· Success stories emphasizing individual advocacy results

· Staff recommended resources and readings

· “Top 10 requested PAI publications” added as link on homepage, creating a shortcut for the thousands who search electronically for our most popular resources

PAI Staff: Barbara Duncan

Grant/Funding Source: Trust Fund

Website Statistics Show Growing Interest in PAI Issues.

During the period May 1-July 31, website use by readers rose from 15,000 a month to 16,000, with more than 150,000 page views for the quarter. Around 20% of the page views are readers catching up on the news on the homepage.

Other top-read pages are PAI jobs, and publications. More than 6500 readers explored our “bestseller,” the new edition of Special Education Rights and Responsibilities. In response to our June 11 press release, about 800 readers searched for the investigative report on restraint and seclusion.

PAI Staff: Barbara Duncan

Grant/Funding Source: Trust Fund

Legislative Page Updated to Help Web Visitors Take Action.

PAI legislative staff reorganized the legislative and public policy section of the site so that it would be easier to navigate and locate legislative information, such as: the legislative contacts at PAI; the legislative guiding principles; links to the legislation and budget position letters; tools to show individuals how to stay informed and take action with links that connect individuals to a voter registration site and to a page to help find a specific legislator and how to contact them. Additionally, the website has links to the California Legislative Information page where a user can find bill information, California laws, information about legislators and legislative publications.

PAI Staff: Brandon Tartaglia, Margaret Johnson, Barbara Duncan, Ruth Ordas

Grant/Funding Source(s): Trust Fund, Equal Access

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: ../../legislature/2007legislation.htm

PAI Sponsored Legislation.

As previously reported in Advocacy Director Report Summer 2007, PAI sponsored two pieces of legislation this year, AB 1659 (Lieber) and AB 1410 (Feuer). Legislative staff worked hard on these bills, they wrote letters on the measures, met with the authors of the legislation and committee staff as the bills moved through the legislative process. Staff also testified on the bills during committee hearings.

AB 1659 (Lieber): AB 1659 was an effort to make the special education dispute resolution process effective, fair, transparent, and accessible for parents of students with disabilities. See Advocacy Director Report Summer 2007 for background information about the bill. It was “held” in the assembly appropriations committee because of the projected cost of the bill.

AB 1410 (Feuer): AB 1410 would require the state to apply to the federal government for a Medicaid waiver to provide more services to people with traumatic brain injury (TBI). AB 1410 cleared the assembly on a party-line vote but picked up Republican support in the senate policy committee, with great advocacy from the sites around the state that serve people with TBI.

In addition, PAI staff has been working to get support – or at least neutrality – from the administration. This included several meetings with the affected departments of the administration. Initially, the state’s initial fiscal impact analysis was fundamentally different from PAI’s cost projections. Staff is hopeful that through all the meetings and conversations, the administration will agree with PAI’s understanding of and analysis, how the bill would work, and how much it would cost. The bill is currently in the senate appropriations committee awaiting hearing.

PAI Staff: Evelyn Abouhassan, Deborah Doctor

Grant/Funding Source(s): Trust Fund, Equal Access

PAI Takes Position on Over 100 Bills this Legislative Session.

PAI took positions, testified on, and/or actively lobbied over 100 bills so far this legislative session, including staffing two PAI sponsored pieces of legislation.

Selected Positions:

AB 18 (Blakeslee): PAI staff worked on this measure during the quarter. Originally, the bill provided that a person with a disability who, because of disability, is unable to write may use a signature stamp when a signature is required. The legislature scaled down the bill to a signature stamp bill for use in the elections process only in order to remove some obstacles to equitable use of the stamp. PAI staff worked in conjunction with other organizations including CFILC, DRAIL, and California Counsel for the Blind. Currently, the bill is in the senate appropriations committee awaiting hearing.

Initiative to Limit Class Actions: Class action lawsuits allow for equitable relief and monetary damages when a large group of plaintiffs suffer a similar type of harm or damages by a defendant in a case. Class actions allow these plaintiffs to seek relief for damages without bringing individual cases or necessarily being named in court documents as long as the members of the class are similarly situated. Earlier in the legislative session, the Civil Justice Association of California (CJAC) sponsored AB 1505. If the bill succeeded, it would have rewritten California class action law and established more onerous prerequisites and criteria for the maintenance of a class action. In the Assembly Judiciary Committee, opponents raised significant opposition so the measure did not move forward. With the failure of the bill in the legislature, proponents now seek to include many of the components in AB 1505 in a proposed initiative to be included on the June 2008 ballot. If this proposed initiative succeeds, many cases that PAI litigates to advance the rights of persons with disabilities would become more difficult. Recently, PAI staff drafted an analysis of the proposal and presented it to the PAI Board legislation committee. The PAI Board legislation committee approved an opposition position to the measure. PAI will be working with other opponents, including the Consumer Attorneys of California, to defeat the proposed initiative.

Health Care Reform: PAI staff worked on health care reform following several parallel tracks including working with: the recently formed Disability Health Coalition (DHC), advocates who represent low-income people and people of color, advocates representing workers; and legislative and governor’s staff.

Key activities by PAI staff include:

· Working with the PAI Board to adopt comprehensive health care principles. The DHC also adopted a set of health care principles (first drafted by Dan Brzovic). These were similar to the version adopted by the PAI Board—although, PAI’s version of the principles included a few additions.

· Opposing AB 8, unless the measure is amended. AB 8 is the merger of the assembly and senate versions of the health care reform proposals. Opposition is based on the policies outlined in the Health Care Reform principles recently adopted by PAI’s Board.

· PAI legal staff working on suggested amendments and PAI legislative staff working with Western Center on Law and Poverty on legislative and other strategies. Legislative staff will also be working with the Disability Health Coalition so that it and its members can take positions and decide on strategies.

Thus far, the governor’s office has not released their competing proposal, which they have been formulating for many months.

PAI Staff: Evelyn Abouhassan, Deborah Doctor, Margaret Johnson, Brandon

Tartaglia, Dan Brzovic, Marilyn Holle

Grant/Funding Source(s): Trust Fund, Equal Access

PAI Engages in May Revise Budget Advocacy.

The governor released the May revision to his January budget in the second week of May. The Revise differs from the original January budget because it can take money away from various budget items or add to them; it can add entirely new items. The legislature then debates the parts of the May Revise which differs from the January budget then the final budget is negotiated between the legislature and the governor, with a target for signing (very seldom met) of June 30. Currently, there is a stalemate between the Democrats and Republicans. Thus, the legislature has not approved a budget as of August 13, 2007.

PAI legislative and advocacy staff actively worked on May Revision budget items that affect individuals with disabilities by testifying in budget hearings as to these issues. While not all inclusive, key budget issues included the Department of Developmental Services budget items, IHSS funding issues and proposed reductions in programs that provide community based mental health services.

Specific May Revision items that PAI legislative staff worked on during the quarter include:

· AAP Program: Dual Agency Foster Care Rates and Adoption Assistance: In the May Revise, the Department of Social Services had a proposal that changed its rate-setting methodology for the care and supervision of foster and adoptive children receiving services from both County Social Services Departments and Regional Centers. The new methodology would have provided an across the board amount of $2,006 per month for care and supervision; the previous amount went as high as $5100 a month based on the needs of the child after an individualized assessment. This change makes it more difficult for foster parents to adopt children with the most severe disabilities who require more care and supervision. Working in coalition with other advocates, PAI legislative staff testified at the May revision hearings, drafted coalition analyses and statements, met with legislative budget staff, the administration and the Governor’s staff to oppose the proposal. In addition, PAI staff worked with other advocates to develop a media strategy and educate the press on the negative ramifications of the proposal. PAI and other advocacy organizations succeeded in getting an exception to the flat rate. The exception would allow for a $1000 increase a month, at the discretion of the counties, for children with the most severe disabilities. An appeal right is also included in the trailer bill language adopted by the assembly and is waiting adoption by the senate.

· IHSS/SSP: The governor repeated his threat to state funding for IHSS in the Revise, despite its prior rejection in the Assembly and Senate in earlier budget hearings. PAI staff, working in coalition with other advocates, participated in a press event the day of the Revise, which garnered substantial publicity for the issue. A San Francisco television station interviewed Deborah Doctor on the IHSS budget proposal; the interview aired on the evening news. Currently, the IHSS program is safe from further cuts; however, the assembly did impose a delay in cost of living adjustments for people on SSI/SSP, which the senate will most likely uphold.

PAI Staff: Evelyn Abouhassan, Deborah Doctor, Margaret Johnson

Grant/Funding Source(s): Trust Fund, Equal Access

PAI Provides Speakers at this Year’s Capitol Action Day.

This year PAI legislative staff again worked in coalition with other disability rights groups to organize Capitol Action Day, an annual event that encompassed an educational forum, a resource fair, a march to the capitol, rally and legislative visits. The theme this year was “Healthcare NOT Wealthcare”. An estimated 2000 people attended from all over the state. Speakers included Deborah Doctor and Dan Brzovic from PAI.

PAI Staff: Brandon Tartaglia, Deborah Doctor, Dan Brzovic

Grant/Funding Source(s): Trust Fund, Equal Access

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 for the past several months. 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.

Community Involvement Project is made up of five committees: Fixed Route Bus Service, Door to Door Service, Working with Transportation Agencies, Off the Hill Transportation, and Other Types of Transportation Services.

In May, Community Involvement Project members in South Lake Tahoe successfully advocated for a public hearing on unmet transportation needs to be held. There is a state requirement that local transit agencies hold an annual public forum so that the public can voice their concerns about unmet transportation needs. Despite this requirement, there had not been a public hearing in South Lake Tahoe for 3 years.

The 5 committees researched facts and prepared presentations for the hearing.

The Fixed Route Bus Service Committee members evaluated bus stops for compliance wit the Americans with Disabilities Act (ADA). They grouped the bus stops into three groups by colors: Green: Met ADA requirements, Yellow: Met some of the ADA requirements, Red: Met none or just one or two of the ADA requirements. They enlarged a map of South Lake Tahoe, mounted it on a display board and color coded the bus stops in one of the three groups with pictures of each stop.

The Door-to-Door Service Committee members presented the results of the survey responses. Out of the 350 surveys they sent out, they received 165 responses.

The Working with Transportation Agencies Committee Members reviewed the federal and state public transportation regulations and statues. They identified the areas where South Lake Tahoe bus service is out of compliance with the law: there is no paratransit services, no TTY or TDD service for people who are deaf or hard of hearing, the informational kiosks for tourists are inaccessible for people who are blind or have vision impairments, bus drivers do not call out the stops when requested, and bus drivers do they provide off route deviations for people with disabilities.

They identified that the Regional Planning Agency oversees public transportation and should establish a transportation advisory committee.

Off the Hill Committee Members gathered testimonials from people who need to go to other cities to get medical treatment, but have no way to get there, if they need to use public transportation.

Project Members who attend the Community College collected 225 signatures for a petition to expand the bus service to the College. Currently the first bus gets to the College at 9:40 in the morning and the last bus leaves the College at 5:40 in the evening. This prevents students from attending morning and evening classes.

In June, Community Involvement Project members presented their data collected in the above areas at the public hearing on unmet transportation needs. They gave both verbal presentations and a written report with recommendations.

They reviewed the report that the Regional Planning Agency wrote summarizing the issues from the public hearing. They identified issues that they had presented at the public hearing, but were omitted in the report and requested that the report be amended to include the omitted issues.

In July Margaret Johnson, PAI Advocacy Director, attended the monthly Community Involvement Project meeting. She gave a presentation on the disability rights movement.

Community Involvement Project members successfully advocated that the follow up meeting to the public hearing be at a location that was accessible, at a time when people could attend, and on a day that people were available. In response to their request, the Regional Planning Agency cancelled the original follow up meeting. They moved the meeting to location Project members suggested, and held this meeting on a day and at a time project members could attend.

PAI Staff: Nakida Gooden, Lori Shepherd, Margaret Johnson

Grant/Funding Source(s): PAVA, Trust Fund

Developmental Disabilities peer self advocacy

DDPSAU Trains People with Developmental Disabilities across California.

Unit staff provided nine trainings and outreaches on a variety of topics such as; IPP Rights, Civic Participation, Voting, Effective Self Advocacy, and Independent Living Service to approximately 333 people in groups such as the San Diego People First Conference, Alta California Regional Center, Agnews Developmental Center, and at the People First of California Statewide Self Advocacy Conference, Mission Bay Day Program Services in San Jose, Chico Training Center, Futures Explored Inc., Golden Gate Regional Center’s annual provider fair.

Developmental Disabilities Peer Self Advocacy, Goal 1

PAI Staff: Marinda Reed, Maria Marquez and Daniel Meadows

Grant/Funding Source(s): PADD/ PAVA

JS has Peer Support as She Moves to a New Living Arrangement.

DDPSAU staff coordinated peer advocacy supports with PAI legal unit staff in order to assist JS a plaintiff in the Capitol People First lawsuit. (See DOL Report Number 47 for more information about this lawsuit). JS received peer advocacy support and was able to successfully move from the large facility she had lived in for more than twenty years into a small home like six bed Intermediate Care facility for people with developmental disabilities who require habilitation supports (ICFDDH). JS is very happy in her current living situation and is enjoying new opportunities to make her own decisions and pursue activities that she enjoys in an atmosphere that is more responsive and supportive to her individual needs.

Developmental Disabilities Peer Self Advocacy, Goal 1, Objective 3

PAI Staff: Marinda Reed, Sujatha Branch, Barbara Dickie, Jonathon Ellison

Grant/Funding Source(s): PADD

DDPSAU Liaisons with Self Advocacy Groups

The DDPSAU maintains liaison relationships with a number of regional, state and national stake holder and self advocacy organizations such as People First of California, National Disability Rights Network 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 have developed a monthly work schedule for the revision of the publication. The DDPSAU worked in collaboration with the PAI Board and People First of California to select a recipient for the tenth annual Sandra Jensen Self Advocacy award.

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

Voting Rights and Civil Participation Training Happens in San Bernadino and Riverside Counties

PSA staff completed two 6-week trainings on voting rights in San Bernadino County at the Upland and Victorville Clubhouses, using curriculum that explains the importance of and the process for voting and encourages civic participation. An average of 11 participants attended each of the trainings. After the training, several group participants registered to vote and volunteered to assist the Voter Registration Office at various polling sites for the 2008 elections.

An additional voting training was provided for individuals at the Independent Living Center at Sutter-Yuba Mental Health. Those trained asked to learn more about self advocacy and assertiveness, which PSA staff will provide in the near future.

Peer Self Advocacy, Goal, Objective

PAI Staff: Garnet Magnus and Karyn Farr

Grant/Funding Source(s): PAVA

PSA Provides Staff at Veteran’s Standown in San Diego.

Every year in San Diego, Standown is held. Standown provides information to veterans about services and community resources available to them. PSA staff have attended this event for the past several years. Since many of the veterans at this event are homeless, PSA helps them understand their right to financial benefits and affordable housing. Many of the veterans at the event also attend the PSA veteran's group. Group members are developing a video to educate the Veterans Administration and the public about the importance of peer support for veterans, because the Veterans Administration decided to stop providing a meeting place for the peer self advocacy group at the veterans’ hospital in La Jolla.

Peer Self Advocacy, Goal 4, Objective A

PAI Staff: Michael McPherson

Grant/Funding Source(s): PAIMI

Workshops Provided by PSA for the Los Angeles Spanish Speaking Community.

The Latino community wanted information and training so they could better understand psychiatric disabilities, their symptoms and effects. PSA staff organized 3 workshops for the Latino community in a church in Los Angeles. PSA staff identified speakers, who are well-respected and well-known in the local mental health community, to present information and answer questions in Spanish. They covered various issues, including the emotional effects of psychiatric disabilities, substance use and cultural differences in the recognition and importance of peer support and self advocacy. An average of 25-35 people attended each of the workshops and expressed interest in more outreach events of this kind. A video of the workshops will be developed for use in educating others in the community.

Peer Self Advocacy, Goal 2

PAI Staff: Senobia Pichardo and Rosie Tellez