This report represents a summary of the work Disability Rights California advocacy programs and projects reported through July 31, 2011; some activities on the legislative and press front may be more current. I would like to thank those who provided the material to make this report possible.

communications

Over the last quarter, communications supported the following: (1) our class action litigation, (2) Disability Capitol Action Day, California’s largest disability advocacy event, and (3) our publications and materials, including those explaining how to maximize access to regional center services. In total, stories about the ADHC lawsuit and closures, and stories about budget driven reductions looming over IHSS service users appeared this quarter in all the influential California dailies and the Associated Press (July 17), as well as local media outlets including News 10 Sacramento, Half Moon Bay News, Napa Valley Register, and health news outlets.

Highlights of our communications work includes:

•       Our May 19 press release in response to the governor’s May Revise; we launched a series of communications in May, June, and July, many of which related to California’s budget

•       Called attention to the dangers of eliminating Adult Day Health Care (ADHC); and when the governor vetoed a compromise offered by the legislature, announced on June 9 our class action suit to halt elimination of the program that benefits 35,000 seniors with disabilities

•       In collaboration with the California Foundation for Independent Living Centers, we widely disseminated a press release calling for all advocates in May to join in Disability Capitol Action Day located in Sacramento to participate in a rally and educational forum. See page 6 below for more information on Disability Capital Action Day

•       A press release on June 23 outlining our educational tools, including the YouTube video describing our services, the weekly eNewsletter, the 2010 Annual Report in English and Spanish, and the CD of our most popular publications

•       Website promotion in late July and early August of a new set of 10 Fact Sheets informing consumers about the budget-driven changes in the Lanterman Act that reduced services to clients of regional centers.

Communications Goals: Goal 2, 3
Public Education Goals: Goal 2, Objective 1
Disability Rights California Staff: Barbara Duncan, Adam Borovkoff
Grant/Funding Source(s): Trust Fund

Trends in coverage

The story that provoked the most response during this period was the specter of harm to around 35,000 Californians with disabilities through the closure of many of the 300 ADHC centers. Many local papers sent reporters and photographers to capture the situation of clients and their caregivers with nowhere to turn. Our case was mentioned repeatedly. Editorials in two Northern California newspapers (June 15th Sacramento Bee and June 16th Fresno Bee) pointed out that closing the centers would end up costing the state significant funding.

The level of coverage was similar to the intense press coverage earlier this year of our Sacramento County lawsuit that kept mental health clinics intact while options were evaluated. Californians are becoming used to hearing about shrinking governmental support in this economic downturn, but do not accept that services can be withdrawn without an adequate plan for the safety of the people who need them. In fact, the August 17^th Los Angeles Times article (“Bruised by budget battle, Jerry Brown curbs ambitions”) quotes its own poll, noting that 64% of voters find trigger cuts in home care services for people who are elderly and disabled unacceptable.

Communications Goals: Goal 2
Disability Rights California Staff: Deborah Doctor, Barbara Duncan, Elissa Gershon, Elizabeth Zirker
Grant/Funding Source(s): Trust Fund, Equal Access

Other issues attracting press coverage

Our view on the insufficient restraint training for school personnel was included in a national overview of the subject by The New York Times (July 7). The NY Times quoted Maggie Roberts and incorporated one of our talking points that standards exist in medical facilities but not schools.

A Washington DC journalist interviewed Evelyn Abouhassan about the importance of teaching disability history in schools and our support for the bill signed by the Governor.

After a spate of deaths at psychiatric facilities this year that were widely covered in the media, Leslie Morrison was interviewed on July 5^th about a recent death in Santa Barbara.

In May, Margaret Johnson was interviewed by the LA Times (May 2) about a reported increase in the fraudulent use of disabled parking placards. This story reappears regularly and seems to have been fueled this time by a Department of Motor Vehicles (DMV) claim that around one third of the placards are obtained through fraud. It is not clear if that estimate was based on studies or was shifting attention from a report that DMV’s outmoded computer program issues the placards to large numbers of deceased Californians.

Communications Goals: Goal 1, 2
Disability Rights California Staff: Evelyn Abouhassan, Margaret Johnson, Leslie Morrison, Maggie Roberts, Barbara Duncan
Grant/Funding Source(s): Trust Fund, PAIMI

Website Activities

 

The daily visitor average for the quarter was 573, 82% of whom were based in California. The top five choices for page visits are as follows: homepage, about us, jobs, publications, and advocacy and cases. The 5 terms most often searched were IHSS, conservatorship, Laura's Law, regional center, and ADHC.

 

The publications most often downloaded or read online were the following: Special Education Rights and Responsibilities, IHSS - Nuts and Bolts, Rights Under the Lanterman Act, Tort Claims, Restraint & Seclusion, Fact Sheets, Abuse and Neglect of Adults with Developmental Disabilities, Questions about Service Animals in Places of Business, and the Five Year Advocacy Plan.

 

Following the June press release reminding readers about some of our publications, subscriptions to our weekly eNewsletter increased from around 280 to over 600.

 

We have not heavily promoted our Facebook page, but visitors are increasing. In this quarter, the daily active (clicked on a link) user average was 3754. The majority of comments left are in favor of something we have done (filed a case or were quoted in the media) or announced (meetings and bills) or requesting our help. A minority of comments are about disability advocacy and activities initiated by visitors. We respond to all comments needing an answer.

 

Communications Goals: Goal 3

Public Education Goals: Goal 2, Objective 1
Disability Rights California Staff: Barbara Duncan, Adam Borovkoff
Grant/Funding Source(s): Trust Fund, Equal Access

LEGISLATIVE ACTIVITIES

NOTE: Legislative activities are current at the time this report is prepared; however, the legislature moves quickly and things can change overnight. For the most current information about legislative activities, check our home page and legislative website: http://www.disabilityrightsca.org/ and http://www.disabilityrightsca.org/legislature/index.htm

California Budget:

See prior versions of our Advocacy Director Report for background information on the California budget: http://www.disabilityrightsca.org/advocacy/advocacyreports.htm

The Governor’s Budget plan released in January called for $12.5 billion in cuts; $12 billion in revenue extensions and changes; $1.9 billion in other "budget solutions"; and, a $1 billion reserve. The plan to address an 18-month budget gap of $25.4 billion was supposed to be completed by March 2011.

The governor was unable to get enough Republican votes to move forward with his budget plan. Instead, Democrats came up with another plan they could pass without Republican support. They passed the plan on June 15 and sent it to the governor for his signature; he vetoed it saying the plan included gimmicks and was not a balanced solution. The governor and the Democratic legislature negotiated and came to an agreement on June 27 to send another budget bill to the Governor’s desk for his approval. He signed it on June 30, 2011.

The new plan depends heavily on growing state revenues of $4 billion to fill the budget gap. If those revenues do not materialize, the plan calls for another round of “trigger” cuts. Trigger cuts are automatic reductions that do not require further approval from either the legislature or the governor. If, by January 2012, the Department of Finance determines the new revenues of $4 billion have not been achieved, the trigger cuts will occur, which includes $200 million in health and human services. The health and human services trigger cuts include a $100 million reduction to Developmental Services, a 20% reduction in each recipient’s In Home Supportive Services hours, and a 15% rate cut to some Medi-Cal managed care health plans.

Throughout the budget negotiations, we advocated against the cuts through position letters, testimony, stakeholder meetings, and meetings with budget and legislative staff. While we spoke against the cuts, we also put forward a variety of alternative cost-saving ideas and strategies to minimize the impact of cuts on our clients. Ultimately, many of the cuts involving programs that people with disabilities care about were adopted by the legislature, including cost sharing and limits on Medi-Cal services, cuts to regional center services, MSSP, CalWorks grants, Healthy Families, shifting mental health services for students from counties to schools, and the elimination of the Adult Day Health Care program.

We summarized the final budget outcomes in a chart comparing all of the budget proposals released since January. For more details about the budget and to view the chart, see it here: http://www.disabilityrightsca.org/legislature/budget/index.htm

Public Policy Goals: Goals 3, 4
Disability Rights California Staff: Evelyn Abouhassan, Deborah Doctor, Margaret Johnson, Brandon Tartaglia
Grant/Funding Source(s): Equal Access, Trust Fund

Disability Capitol Action Day

We worked with California Foundation of Independent Living Centers (CFILC) and many other disability organizations on the eighth annual Disability Capitol Action Day event held on May 25, 2011 at the Capitol. Around 1,100 people braved the pouring rain and cold weather to participate in the event, the theme of which was "Our Voices – Our Choice – Our Lives – Our Vote!"

The event featured an educational forum, a march, and a rally at the Capitol where legislators spoke, and consumer advocates visited with legislators during and after the event. We drew attention to the benefits of community living for people with disabilities and encouraged people with disabilities to vote. We helped organize the rally and brought in guest speakers from the legislature. We helped organize the legislative visits and worked on legislative and budget priority talking points that advocates and consumers used as a tool when visiting legislative offices. Additionally, the day before the event, we made a legislative presentation at the California In Home Supportive Services Consumer Alliance (CICA) annual training day to help the group understand our legislative priorities and why they are important.

Public Policy Goals: Goals 4, 5, and 6
Public Education Goal: Goal 2
Disability Rights California Staff: Deborah Doctor, Merle Levy, Brandon Tartaglia Grant/Funding Source(s): Equal Access, Trust Fund

Highlights of Key Legislation

SB 161 (Huff) would allow non-nursing personnel to administer emergency anti-seizure medication only in cases where a staff member at the school site has volunteered to do so. We supported this bill by drafting letters of support and testifying at hearings. We worked with the Epilepsy Foundation and the author’s office to help counter the arguments made by the opposition to the bill, and attended press conferences to help show the disability community was supportive of the legislation. The bill made it through the Senate and Assembly policy committees, and is currently awaiting hearing in the Assembly Appropriations Committee.

AB 154 (Beall) would expand the coverage requirement for health care service plans or contracts in California to include the diagnosis and treatment of mental illness, and would define mental illness as a mental disorder identified in the Diagnostic and Statistical Manual IV. Defining mental illness is necessary to ensure that mental health parity requirements apply to any diagnosed serious mental illness. It would prevent insurers and health care service plans from adopting narrow and restrictive definitions of mental illness. We provided advocacy through letters, testimony at hearings, and added it to the Disability Capitol Action Day legislative priorities. Unfortunately, the bill did not make it out of the Assembly Appropriations Committee.

SB 48 (Leno) requires accurate instructional materials that include the historical contributions and role of Native Americans, African Americans, Asian Americans, Pacific Islanders, European Americans, lesbian, gay, bisexual, transgender Americans, persons with disabilities, and members of other ethnic and cultural groups.

Originally, the bill did not require that instructional materials include people with disabilities. We worked with the author and sponsor of the bill to include the role and contributions of people with disabilities. The inclusion of people with disabilities will highlight the historical role of people with disabilities and help eliminate bias. SB 48 will also help implement one of our co-sponsored resolutions (ACR 162 Beall) from last session, which designates the second week of October as Disability History Week. We supported the bill through letters, testimony at hearings, and inclusion of the bill in our Disability Capitol Action Day legislative priorities document. The bill made it to the governor and he signed it into law.

AB 1244 (Chesbro) would have created self-directed flexible service options so consumers and their families could obtain regional center services using an individual budget. It also contained a mechanism to increase the wages of direct service staff. We had three major recommendations to improve the bill: (1) clearer values statements concerning any federal waiver that would authorize the service, meaning that any self-directed services program designed through a waiver process should minimize bureaucracy and ensure that individual choice and flexibility are maintained; (2) increase the risk pool ^[1] from 2.5% to 5% to ensure that individuals can remain in self-directed services in the event of extraordinary services that require more resources; and (3) develop a methodology to ensure that consumers retain the same purchasing power when wages and benefits increase.

After the June Board meeting, we worked with the author’s office to include a clear values statement regarding any federal waiver that would have authorized a service and include language to develop a methodology to guarantee that consumers have the same purchasing power when wages and benefits increase. We were unsuccessful in increasing the risk pool because such a change had cost implications. The bill was heard twice in the Senate Human Services Committee in late June and early July, where we testified. It did not have enough votes to make it out of the Committee and is now a two-year bill.

AB 366 (Allen) addresses requirements and protections for involuntarily medicating a person who is incompetent to stand trial. We worked with the author, sponsors, and stakeholders to ensure that involuntary medication can only be given in specific circumstances as well as to ensure the individual has due process rights to challenge the administration of involuntary medication. While we obtained some protections, the bill has extended the time that involuntary medication can be given. We will continue to work with the author on amendments. The bill recently passed out of the Senate Appropriations Committee.

SB 930 (Evans) would repeal 3 of the 10 “anti-fraud” measures passed by the legislature in 2009 in response to unsubstantiated but persistent allegations of fraud in the In-Home Supportive Services (IHSS) program. The three provisions are: (1) fingerprinting of IHSS consumers; (2) fingerprinting of consumers and home care workers on every IHSS timesheet; and (3) prohibiting the use of postal boxes by home care providers. The Department of Social Services (DSS) proposed to spend $41 million dollars on a military-grade device called Morpho-Trak to photograph and fingerprint consumers, but some legislators who originally supported fingerprinting drew the line at this expense. The DSS never projected any savings to these three measures. We and our co-sponsors (SEIU, UDW, and the California Association of Public Authorities) do not expect opposition from DSS and are hopeful for a signature. We made one amendment, with agreement from the California Department of Justice and DSS, to make it easier for information about provider criminal backgrounds to be shared among those agencies and the Public Authorities. The bill is now on its way to the Governor for his signature.

AB 889 (Ammiano) would change the working conditions for domestic workers who are not covered by overtime and other wage and hour rules and would mandate certain benefits. The bill comes from an alliance of domestic workers and their supporters, who seek these reforms nationally and in certain states. While Disability Rights California supports the human rights of all workers, we have strong concerns about the consequences of the bill on people with disabilities who pay privately for personal assistance. Through our advocacy, the bill has been pared back decreasing the costs, but retains some problematic provisions. We have been working with other disability organizations, including DREDF and CFILC, who have also taken “oppose unless amended” positions on the bill, to craft amendments to balance the rights of workers and employers with disabilities who in general are low-income themselves. Many other organizations and individuals – mostly private provider businesses – also oppose the bill. The author may decide to make the bill a two-year bill rather than having it die on the suspense file in Senate Appropriations, which would allow us more time to work out a solution.

Public Policy Goals: Goals 2, 3, 4
Disability Rights California Staff: Brandon Tartaglia, Evelyn Abouhassan, Deborah Doctor, Margaret Johnson
Grant/Funding Source(s): Equal Access, Trust Fund

SELF-ADVOCACY ACTIVITIES

Peer Self Advocacy

Resources Developed for Forensic Hospital Residents

Patton State Hospital and Napa State Hospital residents frequently seek legal and self-advocacy information so they can understand the reasons for their hospitalization and their forensic commitment rights. Upon the request of Patton’s self-advocacy group members, we developed two resource manuals that contain basic legal and general information regarding peer self-advocacy services, self-advocacy groups, and self-advocacy skills. With these resources, residents can learn their rights and how to exercise them. These manuals will be available on CD in Patton’s two main libraries where residents can access the information as needed. We will review and update the resource manuals every six months. In addition to these resource manuals, self-advocacy group members, with our assistance, developed materials on medication review hearings to inform residents about their right to refuse medication and material about the Conditional Release Program (CONREP) to help residents prepare to participate in CONREP and leave the facility.

Peer-Self-Advocacy: Goal 1, Objective A (Materials Development)
Disability Rights California Staff: Garnet Magnus, Debi Davis Grant/Funding Source(s): PAIMI

Self-Advocacy Group Members Leave Facilities and Move into the Community

Since many residents of psychiatric residential facilities have lived there for long periods, residents often need the support of the self-advocacy group and our staff to gain necessary knowledge and skills so they can return to their communities. During this quarter, by learning about various self-advocacy topics, such as Assertiveness Training, Housing Options and Patient’s Rights, one self-advocacy group member is moving from the Crestwood Redding facility into an independent living situation. Another participant from the Crestwood Center self-advocacy group in Sacramento returned to his home county. These are a few examples of how participating in a self-advocacy group helps motivate and prepare group members to leave facilities so that they can live in a home of their choice and once again be active participants in their communities.

Peer-Self-Advocacy: Goal 1, Objective B
Disability Rights California Staff: Mark Olberg, David Solis
Grant/Funding Source(s): PAIMI

Workshops and Self-Advocacy Groups Continue in Sonoma County

Sonoma County Mental Health renewed our contract to provide peer self-advocacy groups. Through services provided under this contract, three self-advocacy groups in the Sonoma Area continue to meet on a weekly basis – Frequently Asked Questions (FAQ) Group, the Wellness Group at The Wellness and Advocacy Center, and an Interlink Group. Group members learn knowledge and skills to advocate for themselves and make positive changes in their lives. For example, a member of the Wellness and Advocacy Center wanted to apply for Medi-Cal benefits but was reluctant to follow through because he feared that his application would be denied. He was unfamiliar with the application process and found it intimidating. Through group and individual discussion and support, he learned about the eligibility criteria and his right to apply for Medi-Cal. With our guidance and his increased knowledge about the application process – he put aside his concerns and applied for Medi-Cal benefits. His application is now filed and pending with Medi-Cal.

Other services provided under this contract include workshops conducted by people who are experts in their field on topics identified by community groups. For example, at the request of the Buckalew Program’s WRAP group, we provided information and training on Advance Directives. Disability Rights California Advocate Ann Coller presented information to help participants learn the difference between a Wellness Recovery Action Plan and an Advance Directive. Because of their participation, three people reported that they completed an Advance Directive.

PSA Goals: Sonoma Contract goals and PSA Goal 1, Objective B
PSA Staff: Leonard Alfaro
Grant/Funding Source(s): Sonoma Contract

Group Members Learn How to Participate on a Board

Following a presentation, we gave on board participation, the San Pedro self-advocacy group members formed a Board to advocate for the group’s goals and needs. Prior to this training, group members feared that if they made any requests for changes at their local mental health clinic, they would be prevented from receiving services there. Forming their own Board of Advisors, group members identified common goals and arranged to speak with the clinic coordinator to address their needs. The Board also advocated for one of the group members who felt that her social worker ignored and disrespected her. The Board helped her advocate for assistance so she could get the assistance she needed from her social worker.

PSA Goals: Goal 1, Objective A (Self-Advocacy Groups)
PSA Staff: Senobia Pichardo
Grant/Funding Source(s): PAIMI

Eureka Self-Advocacy Group Members Form a Speaker’s Bureau

Hope Wellness Center self-advocacy group members are collaborating with Humboldt County Mental Health Services Act staff to develop a speaker’s bureau in order to reduce stigma and discrimination. Through the speaker’s bureau, people with mental health disabilities will educate the public by sharing personal experiences and recovery stories. The hope is that this process will reduce public stigma and discrimination as the community hears about the first-hand experiences of people with mental health disabilities. In an upcoming event, the speaker’s bureau will show the film “Minds on the Edge” To the local community. After the movie, a panel of consumers will talk about their personal experiences, followed by a question-and-answer session with the panel.

PSA Goals: Goal 1 Objective B
PSA Staff: Rob Chittenden
Grant/Funding Source(s): PAIMI

DEVELOPMENTAL DISABILITIES
PEER SELF ADVOCACY

Spring and Early Summer Trainings

During the report period, we provided 19 trainings, presentations, and outreaches on a variety of topics such as: Serving on Boards and Leadership, The Power of Self Advocacy, Employment Rights and Services, Emergency preparedness, Changes to the Lanterman Act, Rights of People Served by the Regional Center System, Rights to Meaningful Day Activities, Disability Rights California and the Developmental Disabilities Peer/Self-Advocacy Unit Services, Rights of People with Developmental Disabilities in Parenting Issues, the California Memorial Project, Voting Rights, Stigma and Discrimination and Individual Program Plan rights.

In the course of providing training and outreaches, we provided information about individual and developmental service system rights and our services to approximately 366 people, and to groups such as: North LA Regional Center consumer advisory committee, The San Diego People First Conference, Easter Seals of Torrance, Mount Diablo People First, North Bay Regional Renter Consumer Advisory Committee, Far Northern Region CNMHC conference, The People First of California Statewide self advocacy Conference, In2vision Services, Solutions Plus, Chico Peer to Peer program, The Arc of San Francisco, and San Gabriel Independent Living Center.

Developmental Disabilities Peer Self-Advocacy Goals: Goal 1, Objective B
Disability Rights California Staff: Daniel Meadows, Scott Barron, Marinda Reed
Grant/Funding Source: PADD, PAVA

The People First of California State Wide Self Advocacy Conference 2011 Was A Great Success

We launched two new training sessions at the People First of California Statewide Self Advocacy Conference. Our First training was entitled “Your Ideal Career” and covered information on employment rights and available regional center and Social Security Administration services for people with developmental disabilities and innovative employment options such as micro enterprises. Participants also learned about career exploration and developing a resume reflecting experience and job skills that people often develop in unpaid or volunteer work.

Our second presentation focused on parenting rights of people with developmental disabilities. This presentation covered the basic rights of all people to parent their children and specific social services practices that can negatively affect people with developmental disabilities. Participants learned about their rights to regional center services and supports, and learned about generic services to support successful parenting. They learned how to access these services and what to do to preserve their rights when someone questions their ability to parent. They also learned where and how to get parenting help when their parenting rights are challenged.

We provided a self advocacy training session at the San Diego People First Conference on self advocacy, the importance of speaking up for oneself, rights and the services needed during the current era of significant budgetary cuts, and changing regional center services delivery regulations.

Developmental Disabilities Peer Self-Advocacy Goals: Goal 1, Objective B
Disability Rights California Staff: Brenda Calderon, Daniel Meadows, Marinda Reed, Jenny Olson, Alicia Mendoza, Scott Barron
Grant/Funding Source: PADD,

“Your Vote is Important” Publication has been Finalized

A new voting rights publication is completed. The publication was developed so that people with developmental disabilities have an engaging and easily accessible document that explains the importance of voting, voting rights and responsibilities, and the assistance available to people prior to and during the voting process. The publication is located at this link: http://www.disabilityrightsca.org/pubs/549801.pdf

Developmental Disabilities Peer Self-Advocacy Goals: Goal 1, Objective C
Disability Rights California Staff: Marinda Reed, Daniel Meadows, Scott Barron, Adam Borovkoff
Grant/Funding Source: PAVA

Voting Rights and Civic Participation Training at Community Rehabilitation Services in San Gabriel

Staff presented a voting rights and civic participation training to consumers of Community Rehabilitation Services (CRS) and the Independent Living Center in San Gabriel. The training was a partnership between the CRS Systems Change Advocate, Disability Rights California, and the Outreach Unit of the Los Angeles County Registrar-Recorder/County Clerk’s office. The training included a demonstration about the InkaVote and Audio Ballot Booth voting systems, poll site accessibility, voter registration, and the importance of civic participation.

Developmental Disabilities Peer Self-Advocacy Goals: Goal 1, Objective B
Disability Rights California Staff: Scott Barron, Hillary Sklar
Grant/Funding Source(s): PAVA

Voting Rights and Civic Participation Training at United Cerebral Palsy in Culver City

Another voting rights and civic participation training was given to United Cerebral Palsy day program consumers. The highly interactive training tested and reinforced participants’ knowledge about their right to vote and the importance of voting and civic participation. The discussion also incorporated questions and answers about voting systems and poll site accessibility. A number of the participants previously volunteered as poll monitors for Disability Rights California’s November 2010 General Election project.

Developmental Disabilities Peer/Self Advocacy Goals: Goal 1, Objective B
Disability Rights California Staff: Scott Barron, Hillary Sklar
Grant/Funding Source(s): PAVA

California Memorial project

California Memorial Project Community Collaboration

In preparation for the dedication of a memorial plaque to be placed on the former grounds of Camarillo State Hospital (CSH), which is now the campus for the California State University – Channel Islands, staff and members from the mental health community worked to identify a location and final wording to be engraved on the plaque. Participants included a consumer who had previously lived in the former hospital, a family member whose father was in CSH and a member of the California Network of Mental Health Clients, as well as Disability Rights California staff. With the cooperation of the university administration, plans are in place for the plaque to be installed and dedicated in time for the CMP Remembrance Ceremony on September 19, 2011.

PSA Goals: Goal 2, Objective A (Systems Advocacy)
PSA Staff: Laura Rasey Miller, Alicia Mendoza, Jenny Olson, Rob Chittenden, Robyn Gantsweg
Grant/Funding Source(s): PAIMI, PADD