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Advocacy Director’s Report

October 30, 2015 Report
This report is a summary of the work Disability Rights California (DRC) advocacy programs and projects reported April 1, 2015, through September 30, 2015; some activities on the legislative and press front may be more current.


COMMUNICATIONS


Highlights of DRC Coverage in Mainstream Media

Media about DRC covered a wide range of topics, including closure of two developmental centers, physician-assisted suicide legislation, service animals, and special education.
Highlights of our press coverage follow:
April
-    Director of Investigations and Grants Administration Leslie Morrison was featured in an investigative piece about abuses in a children’s group home in Davis. The story appeared in ProPublica and was co-published with the California Sunday Magazine.
-    DRC was quoted in a Los Angeles Times story about deaths at Fairview Developmental Center. Leslie Morrison said, “We’re very disheartened about these incidents.”
-    EdSource quoted Leslie Morrison about concerns with the lack of data reporting on the use of restraints and seclusion in schools.
June

  • USA Today ran a story about disability rights advocates’ position on assisted suicide quoting Deborah Doctor, legislative advocate.  Ms. Doctor pointed out that people with disabilities can be coerced by family members not acting in the person’s best interests. Relatives, she said, could put pressure on people to take life-ending medication and our responsibility is to think of people who are most vulnerable to coercion, abuse and pressure.

July
-    The Los Angeles Times reported on the Irvine Company’s discrimination against a renter with two emotional support dogs. Attorney Ann Menasche explained when it comes to housing laws, landlords are required to accommodate both service and emotional support animals.
-    In a Sacramento Business Journal story about ADA lawsuits hurting small businesses, Senior Legislative Advocate Evelyn Abouhassan was quoted on our opposition to narrowing disability rights and stressed the importance of business owners educating themselves about the ADA so they comply with access laws.
August
-    Fox 40 in Sacramento interviewed Communications Director Pat McConahay about parking placard abuse in the city. A city official said one of the largest issues is access for people with disabilities, adding that the spaces downtown are full with drivers who don’t have disabilities. We responded that there are many disabilities that are not obvious, like those who have heart disease.
-    In a Napa Valley Register story about what constitutes a service animal, Staff Attorney Pam Cohen explained restaurants can’t refuse service to individuals who have a service animal.
-    Associate Managing Attorney Maggie Roberts was quoted in an EdSource story about a lack of qualified staff in the Mt. Diablo Unified School District. She pointed out that the sole reason children are placed in the program is for behavioral problems, and they don’t have qualified staff.
-    The East Bay Express ran a story about Oakland Unified School District not meeting the needs of special education students. The story mentioned DRC’s complaint on the issue that we filed with the California Department of Education.

September
The San Bernardino Sun News quoted Robyn Gantsweg, senior peer self-advocacy coordinator, in a story about the California Memorial Project ceremony at Patton State Hospital.
See here for press stories: http://www.disabilityrightsca.org/news/press.htm
Communications Goal(s): Goal 2
DRC Staff: Evelyn Abouhassan, Pam Cohen, Deborah Doctor, Robyn Gantsweg, Pat McConahay, Ann Menasche, Leslie Morrison, Maggie Roberts
Grant/Funding Source(s): PADD, PAIMI, PAIR, EA, Trust Fund


Press Releases

In the April – September period, DRC issued five press releases:
May – Disability Rights California commends Governor Brown for investing in human services in May budget revise: http://www.disabilityrightsca.org/news/2015NewsAboutUs/20150514CommendsGovernorBrownForInvestingInHumanServices.htm
Under proposed settlement, Fresno County prisoners will no longer be denied adequate health care: http://www.disabilityrightsca.org/news/2015NewsAboutUs/20150528UnderProposedSettlementFresnoCountyPrisoners.htm
June – Disability Rights California issues statement on budget and governor’s special session: http://www.disabilityrightsca.org/news/2015NewsAboutUs/20150619pressStatement.htm
Cuts to In-Home Supportive Services program restored beginning July 1: http://www.disabilityrightsca.org/news/2015NewsAboutUs/20150630IHSSStatement.htm
September – In honor of National Voter Registration Day Disability Rights California encourages people with disabilities to register: http://www.disabilityrightsca.org/news/2015NewsAboutUs/20150916VoterRegistrationDay.htm


Communications Goal(s): Goal 2
DRC Staff: Melinda Bird, Deborah Doctor, Margaret Johnson, Pat McConahay, Fred Nisen
Grant/Funding Source(s): PADD, PAIMI, PAIR, EA, Trust Fund


Website, Social Media and Publications

Website: We had 400,537 visits to our website this period. Our top five visited pages were: Publications, Jobs at DRC, Office of Clients’ Rights Advocacy homepage, our staff directory, and a page detailing what we do.
We are currently working on a redesign of our website and hope to have an RFP issued by the end of the year.
Facebook: We have 3,460 likes on Facebook. See https://www.facebook.com/DisabilityRightsCalifornia.
Twitter: We have 4,632 followers. See https://twitter.com/DisabilityCA.
YouTube: DRC’s YouTube channel now features 18 videos. We released a total of three new videos this period: three fundraising videos featuring the 25th anniversary of the ADA and the importance of access to people with disabilities. We are currently completing three videos about service and emotional support animals. See https://www.youtube.com/user/DisabilityRightsCA?feature=watch
Publications: Our top five downloaded publications were: “Special Education Rights and Responsibilities” (English version),” “In-Home Supportive Services Nuts & Bolts,” “Rights under the Lanterman Act” (English version), “Confidentiality of Mental Health Records/Information,” and “Reasonable Accommodations Under Section 8.”
Communications Goal(s): Goal 3, Objectives A, B, C, and D
DRC Staff: Adam Borovkoff, Mimi Hoang, Margaret Johnson, Pat McConahay
Grant/Funding Source(s): Equal Access, Trust Fund


LEGISLATIVE ACTIVITIES

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


Budget Advocacy

Governor Calls Special Legislative Session: As part of approving the budget in June, the Governor called for a Special Session of the legislature to address ongoing funding for some programs, including developmental disabilities services, Medi-Cal, and In-Home Supportive Services (IHSS). 
DRC staff testified at Special Session hearings in support of a new Managed Care Organization (MCO) tax, which is assessed against managed care providers and has been a critical source of Medi-Cal funding. The current structure of the MCO tax must be revised to comply with federal rules. Revenues from this tax would have been used to offset about 1.1 billion in state money in 2015-16. We supported the tax because it would have provided a mechanism for the State to permanently restore the 7% cut for IHSS and it would fund developmental disability services, including provider rate increases, regional center operations including service coordinators and clients’ rights advocates. The special session met but did not enact a new MCO tax. While the Legislature has not adjourned the Special Session, it has not announced further hearings or votes on an MCO tax or any substitute. Without a funding source to replace the MCO tax revenue, there will be an additional 1.1 billion dollar budget gap to address in the January budget.
DPH Complaint Investigations: For years, there have been delays by the Department of Public Health (DPH) in completing complaint investigations, most notably those involving deaths and other serious incidents. Some investigations have taken as long as seven years or were never completed.
DRC worked with budget and policy committee staff on trailer bill language to require the DPH to complete investigations in a reasonable time frame. The Legislature and Administration supported the timelines for all incidents (except those reported by the facilities themselves) and the proposal was adopted. It requires timelines to be phased in over a few years, starting with the most serious incidents, such as deaths or could cause death. By July 1, 2018, all investigations must be completed in 60 days, with the possibility of an additional 60 days if circumstances require.
Public Policy Goal: Goal 1
DRC Staff: Evelyn Abouhassan, Catherine Blakemore, Leslie Morrison, Brandon Tartaglia
Grant/Funding Source(s): Trust Fund, Equal Access


Sponsored Legislation

AB 918 (Stone): Health and Care Facilities: Seclusion Restraints: SIGNED: AB 918 requires the Department of Developmental Services (DDS) to publicly report data it currently collects regarding the use of physical or chemical restraint occurring in regional center vendored facilities. The bill applies to vendored facilities that provide residential services and supported living services as well as long-term health care facilities and acute psychiatric hospitals. These facilities are currently required to report physical and chemical restraint, all serious injuries/accidents, and all consumer deaths. Additionally, AB 918 requires vendored community facilities, long-term health care facilities, and acute psychiatric hospitals to report to DRC any deaths or serious injuries of regional center consumers occurring during or related to the use of restraint or seclusion.
DDS currently collects and publicly reports the use of seclusion, behavioral restraints, and involuntary emergency medication occurring in state developmental centers. The law also requires DDS to report to DRC deaths and serious injuries of developmental center residents related to the use of seclusion and behavioral restraint.
Making this data available to the public should encourage the provision of high-quality services and appropriate monitoring of the use of seclusion and restraint in community facilities.
AB 1518: Nursing Facility/Acute Hospital (NF/AH) Waiver Modernization Act of 2015: The Assembly Aging and Long Term Care Committee is the author of our AB 1518, which would make this Medi-Cal waiver a truly useful tool to enable Californians to receive long term services and supports in their own homes and avoid unwanted, unnecessary and expensive institutional care. DRC represents consumers who want to avoid or leave facilities but are stymied by waiver restrictions. The consumers include young people with high nursing needs aging out of the state’s Early Periodic Screening Diagnosis and Treatment (EPSDT) system, who lose half of their home nursing services when they turn 21. This comprehensive waiver fix bill passed through the Assembly committees and floor with no opposition. The Senate Appropriations Committee reduced the provisions and impact of the bill, and it passed as amended. However, it became clear it would be vetoed, as the administration thinks the bill conflicts with its own calendar for renewing the waiver. We made it a two-year bill, and are involved in the state’s stakeholder process about the waiver renewal terms.
AB 1235 (Gipson): The biggest barrier to people leaving nursing homes is often the lack of affordable accessible housing. Most people who have a home, and no family living in that home, have to turn over their monthly non-SSI income towards share of cost to the nursing home if Medi-Cal is paying for the nursing home stay. This bill would modernize California’s Home Upkeep Allowance, a Medi-Cal provision allowing certain people in nursing homes to keep their home so they can leave the facility and have a home to return to. The bill also introduces a way for people who have already lost their homes to set aside funds, which would otherwise be used as share of cost, so they can obtain and, if necessary, modify a new home. The bill moved with almost no opposition through the Assembly and its policy committee in the Senate. Unfortunately, Senate appropriations, using incomplete information, assigned a high cost to the bill, causing it to be held in that committee. However, the Administration agreed the Home Upkeep Allowance should be improved; we are hoping through negotiations we can arrive at amendments so it will be reconsidered in Senate Appropriations, passed by the Senate and signed.
Public Policy Goal: Goal 1
DRC Staff: Evelyn Abouhassan, Catherine Blakemore, Deborah Doctor, Leslie Morrison
Grant/Funding Source(s): Trust Fund, Equal Access

 

Other Bills

Access Legislation:
SB 251 (Roth) – Oppose: VETOED: AB 251 created a rebuttable presumption for a plaintiff to overcome: that certain "technical violations" of disability access laws do not cause a person difficulty, discomfort or embarrassment, a finding relevant to awarding minimum civil rights damages. This applied to a small business defendant who within 15 days of notice corrected all of the technical violations. The “technical violations” include: the lack of exterior signs; faded, chipped, damaged or deteriorated paint in otherwise fully compliant parking spaces and passenger access aisles in parking lots; and the presence or condition of detectable warning surfaces (also known as "truncated domes") on ramps, except where the ramp is part of a pedestrian path of travel that intersects with a vehicular lane or other hazardous area.
Small businesses with up to 100 employees would have not been liable for minimum civil rights damages in an access claim for 120 days after the business obtained a certified access specialist (CASp) inspection. This allowed the business to identify and correct violations with no liability for civil rights damages. If the defendant failed to correct the violations noted in the CASp report within 120 days, the defendant could not receive a reduction of damages for uncorrected violations.
We worked with other disability groups to oppose the bill because it treated individuals with disabilities differently from other protected classes and narrowed their ability to collect statutory damages for civil rights violations. Our work produced a remarkable effect: 10 Assembly members voted “no” or abstained from the vote on the Assembly Floor. The bill, with miniscule state costs, was vetoed by the Governor as part of his pattern of vetoing bills with any state costs because the legislature did not approve a new MCO tax or other method (see above).
AB 1230 (Gomez) – Support: SIGNED: AB 1230 establishes the California Americans with Disabilities Act Small Business Capital Access Loan Program to create a self-sustaining program to provide loans to help small businesses pay for the cost of projects that help the business comply with the federal Americans with Disabilities Act.
The bill transfers $10,000,000 from the General Fund to the proposed California Capital Access Loan Program Fund to administer the program. We supported the bill because of its potential to increase access compliance by small business.
AB 1521 (Assembly Committee on Judiciary) – Neutral: SIGNED: This bill adds additional procedural requirements for high-frequency litigants and their attorneys in access cases. The bill defines a high-frequency litigant as a plaintiff or attorney who has filed 10 or more complaints in a 12-month period immediately preceding the 11th case filing. The bill requires payment of a high-frequency litigant fee at an amount not to exceed $1,000, but it can be waived for low income plaintiffs
The bill requires an attorney to report to the California Commission on Disability Access (CCDA) within five business days of judgment, settlement, or dismissal of the claim or claims certain information about the case and whether violations are corrected.
We took a neutral position on the bill, believing the additional data will illuminate whether access violations are being fixed.  Since the higher filling fee can be waived by the courts for low income plaintiffs, we were less concerned that the additional filling fee would limit access to the courts.
Developmental Disabilities Legislation:
SB 644 (Hancock) – Support: SIGNED: This bill allows a regional center client to qualify for employment under the state Limited Examination and Appointment Program (LEAP) without taking the written examination or readiness evaluation. Instead of the written examination, the bill requires the competitive examination consist of a state agency internship.
DRC had concerns the bill limited choice since an individual may prefer to take the LEAP examination rather than participate in the internship program. We were concerned that the internship period was too long as some individuals might show they are qualified in a shorter period of time. We worked with the author and sponsors to ensure a regional center client can choose to take the LEAP examination or participate in the internship. The bill reduces the internship period from 1,024 hours to 512 hours. Because of these changes, we supported the bill.

Mental Health Legislation:
SB 11 and SB 29 (Beall) – Support: SIGNED: These bills mandate additional behavioral health training for peace officers. SB 11 requires at least 15 hours of classroom training on interacting with people with mental health or intellectual disabilities. SB 29 requires field trainers to have at least eight hours of behavioral health training and requires cadets to take at least four hours of field competency training about interacting with people with mental health or intellectual disabilities.
Police officers are often the first responders to a person in crisis, but they receive only six hours of training in working with people with disabilities.
DRC’s report, “An Ounce of Prevention: Law Enforcement Training and Mental Health Crisis Intervention” (http://www.disabilityrightsca.org/pubs/CM5101.pdf) called for more law enforcement training and made recommendations based on successful crisis intervention/de-escalation programs from around the state and country. We worked with the author’s office to ensure the bills were guided by the recommendations in the report.
Voting Legislation:

SB 589 (Block)—Support: SIGNED: Existing law regulates the terms and conditions of conservatorships and requires a court investigator, among other things, to determine whether the proposed conservatee is capable of completing a voter registration form and if they cannot the person may be disqualified from voting. This bill follows up on changes made last year in AB 1311 (Bradford 2014) prohibiting a person, including a conservatee, from being disqualified from voting because the person signs a voter registration form with a mark or a cross, signs with a signature stamp, or completes the form with the assistance of another person. But the right to reasonable accommodations was not included. SB 589 makes it clear a person with a disability is entitled to reasonable accommodations in completing a voter registration form.
Physician Assisted Suicide:
ABx2 15 (Eggman) – Oppose – SIGNED: During the Special Session on health, Assemblywoman Eggman introduced this bill, almost identical to the one stalled in the Assembly Health Committee during the regular session. The bill allows a physician to prescribe a lethal dose under certain conditions to a person deemed to be within six months of death. By using the special session, the proponents were able to circumvent the Assembly Health Committee. Having adopted principles on physician-assisted suicide, DRC opposed this bill because it lacked the safeguards identified in the Board’s principles. Almost all disability groups opposed the bill. The bill passed the Assembly and Senate in a few days and was sent to the governor, who signed it.
Public Policy Goal: Goal 1
DRC Staff: Evelyn Abouhassan, Catherine Blakemore, Deborah Doctor, Margaret Johnson, Brandon Tartaglia
Grant/Funding Source(s): Trust Fund, Equal Access

Outreach and Education:

Disability Capitol Action Day:  May 20, 2015, was the 12th annual Disability Capitol Action Day (DCAD), which celebrated the 25th anniversary of the Americans with Disabilities Act (ADA). We focused on the importance of the ADA and how it changed the lives of people with disabilities, and what still needs to be accomplished. As part of this focus, Youth Organizing! Disabled and Proud held a panel in the Capitol discussing the differences in the lives of people with disabilities before and after the ADA.
DRC staff chaired the event this year. We worked on the logistics and the legislative platform with our advocacy partners, including People First of California, the California Association of Public Authorities and the California Foundation for Independent Living Centers. We prepared and distributed our legislative platform to every legislative office; several advocates had productive meetings with legislative staff. The coalition had a separate legislative booth where we educated participants about pressing disability issues and encouraged them to make visits to their legislators to discuss them.
Public Policy Goals: Goal 2
DRC Staff: Brandon Tartaglia
Grant/Funding Source(s): Equal Access


PEER SELF-ADVOCACY

Peer Self Advocacy Group Successes

New PSA Self-Advocacy Group Member Takes First Steps Toward Getting Off Conservatorship: The PSA established a new self-advocacy group, “Cordilleras,” in San Mateo County. Self-advocacy group members learned about self-advocacy and LPS Conservatorship in order to exercise their rights. One group member, “Lupe,” (all names in this part of the report are not real names) wanted to get off conservatorship and become independent. As a result of participating in the self-advocacy group, she developed an action plan to get off conservatorship.
The first step of her plan was to ask her brother for assistance so she could prove she was able to provide for her food, clothing and shelter with his support. She sent him DRC publications so he could learn more about what he had to do. Then she filed her brother’s letter with the court. The letter stated he would provide assistance. In this way, Lupe applied what she learned and became her own self-advocate and exercised her rights.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff: Leo Alfaro
Grant/Funding Source(s): PAIMI

Napa State Hospital Resident Uses his Self-Advocacy Skills to Advocate for Snack Machines: “
Mr. Jones” has been at Napa State Hospital for more than 20 years and coming to the Napa State Hospital Self-Help Office for over 4 years.
Since Napa residents’ lives are restricted in a forensic environment, even small things other people take for granted are important. For example, Mr. Jones enjoys buying a soda and a candy bar once a week. However Napa State Hospital decided to remove all soda and snack machines because they believe soda and snacks impact resident’s health.
Using knowledge and skills he learned from resources provided by PSA’s Self-Help Office, Mr. Jones circulated a petition asking the administration not to remove the soda and snack machines. He then wrote a letter to the hospital’s Executive Director, advocating to keep the machines so residents could make their own food choices, just as they would in the community.
Unfortunately, the hospital administration is moving forward with their plan. But through this process, Mr. Jones learned when one level of advocacy does not get the results wanted, there are other strategies that may. Mr. Jones filed a writ of habeas corpus with the Napa Superior Court, asking the court to address the issue.
As of this writing, the court’s response is unknown. However Mr. Jones learned about his right to file a writ and developed self-advocacy skills through attending the PSA Self-Help Office.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff: Debi Davis
Grant/Funding Source(s): PAIMI

Self-Advocacy Group Member Plans to Return to School and Work:
A member of the “El Progresso” self-advocacy group is taking steps to return to school and get a job. For “Lilia,” working is an important part of her life.  It gives her a sense of dignity and self-worth. Through what she learned at the group, she made a plan to talk with her case manager about employment opportunities and make an appointment with Disabled Student Services to find out what resources are available so she can succeed in school. With information about her employment and education rights, she now knows she is not required to disclose her disability to a potential employer or school, unless she chooses to request a reasonable accommodations. She learned working could possibly affect her social security benefits, so Lilia requested more information and PSA staff provided her with DRC materials on the subject. She now has the information she needs to move forward with her plans.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff: Senobia Pichardo
Grant/Funding Source(s): PAIMI

Having a Right Means We Can Choose Not to Exercise That Right:
A voting rights workshop was presented at the “Santa Fe Social Club” clubhouse in Yucca Valley. Participants learned about the voting and registration process, including their right to vote by mail, political parties and the importance of voting on issues that affect people with mental health disabilities. Some participants choose not to vote because they assume registering to vote requires them to participate in jury duty.
We explained that, regardless of whether they registered to vote or not, they could still be contacted for jury duty. Participants also were concerned their votes don’t count. We explained by law each vote is counted. With this information, some still chose not to register to vote but understood voting was a right and not a requirement. This is an example of how learning about rights and how to advocate also involves having the freedom to make decisions about whether or not to exercise rights.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Workshops)
DRC Staff: Robyn Gantsweg
Grant/Funding Source(s): PAVA

New UCLA College Student Self-Advocacy Project:
After conducting several presentations on university campuses in southern California, we found many college students with mental health disabilities are not aware of services and resources on campus. As a result, many have difficulties navigating the university system and succeeding.
In response, we developed a pilot project proposal to provide self-advocacy services to college students to learn their rights, develop self-advocacy skills and learn about campus and community resources.
In June, the PSA program was awarded a $15,000 grant from the Disability Studies Philanthropy Class at UCLA to implement the project. Collaborating with UCLA’s NAMI-on-Campus student chapter, we are planning and organizing a series of self-advocacy workshops on topics of interest to students, including reasonable accommodation rights, information about psychiatric service and emotional support animals, employment rights, self-disclosure issues, and Department of Rehabilitation services.
We are planning train-the-trainer workshops to teach students how to facilitate student-led peer self-advocacy groups so the project can continue after the grant ends on May 1, 2016. We are working to develop a website as a “one-stop shop” for students to find information on services, resources, upcoming events, hot topics, YouTube videos, and participate in webinars and a peer-led online community through Tweet-Ups and contributions to an Ask-a-Peer column.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Workshops)
DRC Staff: Robyn Gantsweg
Grant/Funding Source(s): Disability Studies Philanthropy Class at UCLA and PAIMI

California Memorial Project (CMP)

On September 21, 2015, the Peer Self-Advocacy program collaborated with community members to hold the California Memorial Project’s (CMP) 13th Annual California Remembrance Day ceremonies to honor and acknowledge people with mental health and developmental disabilities who lived and died at state hospitals and developmental centers throughout California.  Over 350 people attended 10 ceremonies at 9 different sites, either on institution grounds or at burial sites. These included Patton and Metropolitan State Hospitals, Agnews and Porterville Developmental Centers, two at Napa State Hospital and ceremonies in Sonoma, Stockton, Ukiah and Manteca.
At many of the ceremonies, consumers, state hospital and developmental center staff and local representatives spoke about the CMP’s significance to people with disabilities, institution residents and the community. Media outlets reported on the ceremonies, including the San Bernardino Sun and the Payday Press.
Peer-Self-Advocacy Goal(s): Goal 2, Objective A (Systemic Advocacy) DRC Staff: Rob Chittenden, Martha Cook, Debi Davis, Monica Gallegos, Robyn Gantsweg, Yvonne McGough, Alicia Mendoza, Jenny Olsen, Senobia Pichardo
Grant/Funding Source(s): PAIMI