California’s protection & advocacy system

For legal assistance call 800-776-5746. For all other purposes call 916-504-5800 in Northern CA

or 213-213-8000 in Southern CA. TTY 800-719-5798.

 

Advocacy Director’s Report

October 31, 2014 Report
This report represents a summary of the work Disability Rights California (DRC) advocacy programs and projects reported through September 30, 2014; 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


Highlights of DRC Coverage in Mainstream Press

Press reports mainly covered:
Our opposition of the governor's plans to cap in-home supportive services (IHSS) hours to avoid overtime and the adoption of assisted outpatient treatment (AOT)
From April to September 30, we averaged a weekly report in the mainstream press, ranging from newspapers to popular NPR radio shows such as The California Report and All Things Considered. Highlights of our press coverage follow:
May

  • Deborah Doctor was quoted in the San Jose Mercury News about how the governor's plan to cap IHSS hours in response to new federal regulations on overtime for homecare workers would put many people with disabilities at risk of not having personal care when they need it.
  • Board member Pamela Romano and Leslie Morrison co-authored an op-ed in the May 7 Orange County Register urging the creation of innovative programs in response to violence rather than implementing AOT programs.

June

  • The June 4 issue of the Capitol Weekly featured Margaret Johnson's op-ed about the need to "Restore benefits for IHSS care workers." On June 5, KQED featured the looming budget battle over IHSS overtime, including Deborah Doctor's report that some homecare recipients were afraid they might have to hire strangers. After the Governor conceded some overtime pay would be available, DRC was included in some of the post-victory reports, including the June 12 issue of the Los Angeles Times.
  • On June 5, Board member Eduardo Vega and Catherine Blakemore co-authored a widely read San Francisco Chronicle op-ed on how "Voluntary mental health services will deliver better outcomes" than AOT.
  • In the June 11 San Francisco Chronicle, Melinda Bird explained the  importance of a court ruling concerning mental health parity in health insurance coverage of anorexia treatments. “This ruling will make a tremendous difference on the ground for thousands of people with insurance—and will set a precedent to require insurers to cover effective treatments for other mental health disabilities, such as schizophrenia.”

July

  • The July 26 issue of Pasadena Star-News ran an in-depth report about civil rights complaints related to the practice of restraint and seclusion in California schools. Leslie Morrison noted that it is impossible to gain a full picture of how widespread problems are in California schools as, unlike many states, we do not gather the necessary data.

August

  • The social and cultural issues weekly paper, San Diego CityBeat, did an in-depth story on August 27, about how people with disabilities are getting lost in the criminal justice system. Suzanna Gee was quoted, explaining how prisoners with mental health disabilities fare in the prison system and advocating for alternative options such as diversion programs.

September

  • KQED issued an audio and online series, posted on September 30, about new approaches to police training in mental health issues, particularly how to de-escalate mental health crises. Leslie Morrison was interviewed about a study our investigations unit published, recommending first responder training about working more effectively with people undergoing mental health crises.

See here for press reports: http://www.disabilityrightsca.org/news/press.htm
Communications Goal(s): Goal 2
DRC Staff: Melinda Bird, Catherine Blakemore, Deborah Doctor, Barbara Duncan, Suzanna Gee, Margaret Johnson, Leslie Morrison
Grant/Funding Source(s): Equal Access, Trust Fund


Press Releases

In the April to September period, DRC issued three press releases:
May - to publicize our June 3 hotline for voters in the primary. (See http://www.disabilityrightsca.org/news/2014NewsAboutUs/20140529JunePrimary.htm.)
July - urging the State to devote more resources to move developmental center residents into the community, following Sonoma Developmental Center’s loss of federal funding. (See http://www.disabilityrightsca.org/news/2014NewsAboutUs/20140730SonomaDevCenter.htm.)
September - DRC and San Diego Rescue Mission announce settlement of a disability discrimination case. (See http://www.disabilityrightsca.org/news/2014NewsAboutUs/20140924DRCandSDRescueMission.htm.)
Communications Goal(s): Goal 2
DRC Staff: Barbara Duncan, Fred Nisen, Ann Menasche, Jean Merrigan, Leslie Morrison
Grant/Funding Source(s): Equal Access, Trust Fund


Website, Social Media and Publications

Website: We had 352,760 total visits to our website for this period. Our top five visited pages were: homepage, about us, publications, connect with us, and special educations rights & responsibilities publication. This has not changed from last period. Our top non-English web page was Spanish publications.
During this period we released our homepage as a mobile application for mobile devices like smart phones and tablets.
Facebook: We continue to increase Facebook readers. In the spring of 2014, our most popular posts were viewed about 400 times, double from the previous year. Between April 1 and September 30, 1970 individuals, comprising over a third of our Facebook visitors, went directly to our website homepage. Like many advocacy organizations, about 50% of the stories and 75% of the publications we announce are DRC related. The other 50% provide news or information about disability issues and collaborating advocacy groups.
We use Facebook to interest new readers in DRC. Facebook readers are drawn mostly by graphics, photos and short success stories to "like" a post and "share" it with their virtual friends. As of September 2014, our Facebook friends totaled 2,475.
Some DRC posts that have drawn larger numbers of readers are:

  • a May 27 DRC success story resulting from a complaint that a 7 year old with Down syndrome was excluded from a program by her school district solely based on her disability brought 1,514 viewers;
  • our July 1 alert that a Sacramento hospital was about to stop providing anesthesia for people with developmental disabilities during dental procedures drew 1,060 individuals;
  • in August 465 read about our support for Senate Bill 1093 ensuring regional center services are equally accessible to all Californians with developmental disabilities; and
  • 485 checked out our August success story about preserving Section 8 subsidy for a second bedroom to house medical equipment.

See https://www.facebook.com/DisabilityRightsCalifornia.
Twitter: DRC’s Twitter channel continues to do well and continues to grow in popularity. We currently have 3,399 followers and tweet in multiple languages.
On September 15, we conducted a live tweet event at California’s Memorial Project ceremony in Stockton. We started tweeting at 9:00 a.m. about the history of California’s memorial project. During the event we tweeted photos from the actual event, along with facts and figures about the event itself. We tweeted close to 40 times and our tweets were retweeted by others an equal amount. This is our first time doing a live tweet event and it was so well received that other staff have demonstrated interest in doing more. See https://twitter.com/DisabilityCA
YouTube: DRC’s YouTube channel now features eight videos, with plans for more coming this year. We released a new YouTube video during this period called “Awareness, Action and Acceptance.” This five minute video features real people’s stories about mental health stigma, discrimination, employment, recovery and hope. It currently has 160 views and is our 8th video posted on our channel. To see this and all DRC videos go to https://www.youtube.com/user/DisabilityRightsCA?feature=watch.
Publications: Our top five downloaded publications this period were: “Special Education Rights and Responsibilities,” “Rights Under the Lanterman Act,” Confidentiality of Mental Health Records/Information,” “In-Home Supportive Services Nuts & Bolts,” and “How to Obtain an Independent Educational Evaluation at Public Expense.”
Communications Goal(s): Goal 3, Objectives A, B, C, and D
DRC Staff:  Adam Borovkoff, Barbara Duncan, Mimi Hoang
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 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


Sponsored Bills

SB 1093 (Liu) Signed by the Governor in September 2014, this bill helps to ensure regional center services are equally accessible to all Californians with developmental disabilities. It enhances the stakeholder process currently required by law. Current law requires regional centers to outreach, notify, and provide information to diverse communities about stakeholder meetings to discuss purchase of service expenditure data. At this meeting, diverse communities have the opportunity to provide input about the data. This bill ensures more effective participation by diverse communities and calls for greater transparency and accountability from the regional centers.
Some individuals from underserved and diverse ethnic and cultural backgrounds choose to live at home with their families. Some regional centers require consumers to plan to move out of the family home to receive Independent Living Skills (ILS) services. SB 1093 ensures ILS services are available to regional center consumers when they live in the family home, if consistent with the consumer’s Individual Program Plan. Finally, it requires regional centers to consider culture and language as they develop Department of Developmental Services (DDS) contract objectives. We worked with legislative staff, stakeholders, and received technical assistance from the DDS to address cost issues. The bill was co-sponsored with the Special Needs Network, a non-profit based in Southern California.
Public Policy Goal(s): Goal 1
DRC Staff: Evelyn Abouhassan, Tho Vinh Banh
Grant/Funding Source(s): Equal Access, Trust Fund
AB 1847 (Chesbro) This bill was signed by the Governor on July 18, 2014. Language in California codes had not kept up with more contemporary language and terminology surrounding mental health issues and includes offensive and stigmatizing terms. This bill replaced outdated statutory terms for people with mental health disabilities, such as crazy, lunatic, insane, feeble-minded, mentally defective, and abnormal. AB 1847 uses “people first” language, thereby promoting respect and dignity of people with mental health disabilities. We worked on the initial language of the bill and drafted several amendments to address stakeholder concerns about unintended consequences, and wrote a letter in support of the bill.
Public Policy Goal: Goal 1
DRC Staff: Brandon Tartaglia, Mike Stortz, Dan Brzovic
Grant/Funding Source(s): Equal Access, Trust Fund


Other Legislation

SB 577(Pavley)
This bill increases opportunities for individuals with developmental disabilities to gain integrated, competitive, community employment and career advancement with a new “Community Based Vocational Development Service,” which includes individualized job development and skills training. The new service is conditioned upon qualifying for federal matching funds. We met with the sponsors, submitted a letter in support and testified in committee. We also wrote a letter to the Governor asking for a signature; he signed the bill in September 2014.
AJR 36 (Gonzalez) This resolution would have called for the establishment of fair wages and equal treatment for all workers by calling on the federal government to end the use of Special Minimum Wage Certificates for workers with disabilities. These certificates, allowed by Section 14(c) of the 1938 Fair Labor Standards Act, allow employers to pay workers with disabilities less than minimum wage. Subminimum wages are determined by time studies, which compare the “productivity” of a worker with a disability to that of a worker without a disability. We drafted letters of support and testified in support of the measure in various assembly and senate committees; we made legislative visits to help move the bill off the Senate floor. Despite our efforts, the resolution did not have enough votes to move from the Senate floor and was not successful.
AB 2041(Jones) This bill would have made training and education requirements for Behavior Management Assistants and Behavior Management Consultants who provide behavioral health treatment to individuals with pervasive developmental disorders and autism spectrum disorders consistent with the definition of behavioral health treatment services covered under health care service plans and policies. Not all health insurance plans adhere to the mandate to cover behavioral health treatment because the regulations specify professionals need education and experience in applied behavior analysis. AB 2041 would have allowed for vendorization of alternative evidence-based modalities. It would have allowed practitioners to make treatment decisions based on the unique needs of the child rather than using a "one size fits all" approach to therapy. We advocated for the legislation and wrote letters in support. The bill was held in the Senate Appropriations Committee because of costs.
AB 1572 (Eggman) This bill requires every licensed residential care facility for the elderly (RFCE), at the request of two or more residents, to help residents establish and maintain a resident council. The bill also:

  • authorizes family members, resident representatives, advocates, long-term care ombudsman program representatives, facility staff, or others to participate in resident council meetings and activities at the invitation of the council;
  • authorizes a resident council to make recommendations to improve the quality of daily living and care in the facility;
  • requires facilities to respond in writing within 14 calendar days regarding any action or inaction taken in response to written concerns or recommendations submitted by the resident council; and
  • requires facilities to post this provision in a prominent place.

We supported this bill through letters and testimony at hearings. The bill was signed by the Governor on July 23, 2014.
AB 1899 (Brown) This bill prohibits a licensee of a Residential Care Facilities for the Elderly whose license has been revoked or forfeited for abandonment from receiving a future Department of Social Services license. They will not have the right to petition for reinstatement. The abandonment of residents at Valley Springs Manor in Castro Valley highlighted the need for more severe repercussions when licensees disregard health, safety, and moral standards. This bill will keep bad licensees from continuing bad practices and help keep residents safe. We supported this bill with letters, testimony at hearings and technical support to the author’s office. The bill was signed by the Governor on September 28, 2014.
AB 1455 (Campos) This bill authorizes a school district to refer a pupil affected by an act of bullying, to related supports. These may include meeting with the school counselor, school psychologist, social worker, child welfare attendance personnel, school nurse, or other school support service personnel for case management, counseling, or participation in a restorative justice program. Children with disabilities are disproportionately discriminated against, harassed, intimidated, and bullied in schools, on the basis of their disabilities or on some perceived characteristic of having a disability. This bill will help them receive services to cope with instances of bullying, making it easier to remain in school with their non-disabled peers. We supported this bill through letters and testimony at hearings. The bill was signed by the Governor on August 21, 2014.
AB 420 (Dickinson) This bill makes changes to current law regarding school discipline and will have a positive impact on students with disabilities. The bill eliminates the authority for schools to suspend students in grades K-3 for disruption and willful defiance of authority, and prohibits them as reasons for expulsion to students in grades K-12. Students who have disabilities are often suspended or expelled as a disciplinary measure for behaviors that are really a manifestation of their disabilities. This bill will help prevent inappropriate suspension and expulsion. We worked with the sponsors and the author’s office to support this bill with testimony in committee hearings and wrote letters. The bill was signed by the Governor on September 27, 2014.
AB 1014 (Skinner) This bill establishes gun violence restraining orders and firearms seizure warrants. The bill’s focus is on dangerous or violent behavior and very specific criteria is considered when deciding if a firearm should be removed. Mental health status is not one of the factors. It was critical, in our view, that any limits on firearm possession be focused on dangerous behavior related to firearm use rather than mental health status. A focus on mental health status would tend to perpetuate incorrect stereotypes and stigma about mental health and gun violence. We provided input to the author on proposed changes and were successful in ensuring the bill does not perpetuate stigma and discrimination. The bill was signed by the Governor on September 30, 2014.
AB 1960 (Perea) The bill requires the attorney general to provide state summary criminal history information to the director of a state hospital for any patient committed to that facility for treatment. The bill would require the state hospital to only use the information for the purpose of treatment or the determination of security required for that patient and to remove the information from the patient’s file and destroy it within 30 days of the patient being discharged. DRC was concerned that the bill applies to patients who have not been found a “danger to others” by the court and there was no limit on how far back into the criminal history the state hospital could go. The bill allowed unlimited access to the records by any state hospital employee and had few safeguards for protecting the information. DRC’s input lead to the addition of measures to restrict access to the records and require training of those obtaining the records. The bill was signed by the Governor on September 28, 2014.
AB 1340 (Achadjian) This bill creates state hospital enhanced treatment programs (ETP). The primary purpose of this bill is to allow Department of State Hospitals (DSH) to place patients in locked rooms, similar to prison cells, and exempt this practice from seclusion and restraint laws. The bill allows patients to be locked in rooms through a simple referral by a psychiatrist or psychologist with minimal due process prior to locking the patient up. Once the patient is in the unit, treatment teams make decisions about the length of time the patient needs to stay locked in a room. As a result of DRC advocacy the bill includes more protections for patients, including turning the ETPs into pilot programs of four year duration, placing a patients’ rights advocate on each ETP, holding an impartial hearing after a patient has been in an ETP for one year, and requiring DSH to collect data on the ETPs and draft reports to legislative policy and budget committees. The bill was signed by the Governor on September 28, 2014.
Public Policy Goals: Goal 1
DRC Staff: Brandon Tartaglia, Evelyn Abouhassan, Andy Mudryk, Jonathan Elson, Margaret Johnson, Dan Brzovic, Pam Cohen, Leslie Morrison, Catherine Blakemore
Grant/Funding Source(s): Equal Access, Trust Fund


Coordinated Care Initiative (CCI)

The 2012 budget authorized the CCI, by which persons eligible for both Medicare and Medi-Cal (dual eligibles) will receive medical, behavioral, long-term supports and services including home- and community-based services, through a managed care health plan in eight demonstration counties (Alameda, Los Angeles, Orange, Riverside, San Bernardino, San Diego, San Mateo, and Santa Clara).
CCI contains three key components: (1) Cal MediConnect – Individuals who receive Medi-Cal and Medicare (dual eligibles) and who elect to receive both Medi-Cal and Medicare through a managed care plan; (2) mandatory enrollment of dual eligibles (including those who opt out of Medi-Connect for their Medicare services) into Medi-Cal managed care for their Medi-Cal services including long term services and supports; and (3) movement of long-term supports and services into managed care for duals and for seniors and persons with disabilities (who are already in managed care for their Medi-Cal). Roll-out in some counties will start in late 2014 or in 2015.
Enrollment is underway, and DRC staff, in joint advocacy with other organizations, continues to push for fixes for significant problems, including:
1) confusion from enrollment notices and materials, which are misleading and unintelligible and were never tested with beneficiaries;
2) bad information from the enrollment broker;
3) populations receiving notices to enroll or being enrolled when they are exempt;
4) widespread disability inaccessibility of offices and information;
5) interruptions in crucial medical and pharmacy services; and
6) lack of information about whether people are receiving the services they need overall, and the health care options benefits in particular.
Public Policy Goals: Goals 1 and 2
DRC Staff: Deborah Doctor, Dan Brzovic, Elissa Gershon, Ron Elsberry
Grant/Funding Source(s): Equal Access


In-Home Supportive Services (IHSS)

The federal government recently enacted new rules requiring overtime to be paid for domestic workers, including those among the 370,000 IHSS workers who work more than 40 hours per week. The Governor proposed to ban overtime. However, the final budget agreement included overtime for most workers who work more than 40 hours, but with a complicated process and formula by which the administration hopes to control growth in overtime. The new rules go into effect on January 1, 2015, with a three month grace period to allow consumers and providers to grasp the new rules.
The overtime may make the IHSS provider job more attractive, possibly increasing the pool of competent providers. It will increase the income of thousands of providers, including those who share a household with the consumers for whom they work.
However, consumers, providers, counties and the state face a host of new obligations, some of which are required by federal law (e.g., weekly time schedules) but most of which are required by new state laws. The new rules are complicated and difficult to explain simply and leave several groups of consumers in danger of not having all their authorized services done by the provider they choose. DRC has written two publications to explain the rules, which to date are the only publications available to consumers and providers. We are working along with consumer and provider advocates, including the provider unions, and legislative staff, to get the state to make exceptions to the rules so that no one is put at risk as a result of California’s implementation of the new overtime rules.
Outreach, Public Education and Training: Goal 1
Public Policy Goals: Goals 1 and 2
DRC Staff: Deborah Doctor
Grant/Funding Source(s): Equal Access

 

PEER SELF-ADVOCACY (PSA)

Peer Self Advocacy Group Successes

Learning about After-Care Planning:
Reviewing and discussing the materials, “What should be in an aftercare plan,” members of the Victoria self-advocacy group in Los Angeles learned they had a right to request and get a copy of their aftercare plan.  With this knowledge, one of the group members felt more confident and asked for a copy. As a result, she asked her doctor for more information about the medication dosages she was prescribed, why she was being given them and the potential side effects. Now she knows more about how the medication is supposed to help her and what she could expect regarding potential side effects.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff:  Senobia Pichardo
Grant/Funding Source(s):  PAIMI

The Importance of People First Language:
Members of the self-advocacy group, “El Progresso” in San Pedro, learned about the importance of “People First Language in Mental Health” and how the words that people use have an impact on how others perceive them and how they feel about themselves. As a result group member requested staff members respect them by using people first language when interacting with them.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff:  Senobia Pichardo
Grant/Funding Source(s):  PAIMI

Group Advocacy Project Success:
Members of the Huron women’s self-advocacy group wanted help improving their English language skills so they could better navigate the mental health system. Living in a very rural area, there are few Spanish resources available. As a group advocacy project, they requested English classes from Westside Preservation Family Services. The director agreed that there was a need for this service and now teaches free weekly English classes that are providing participants with helpful tools and skills they can use to more effectively find and access the assistance they need.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff:  David Solis
Grant/Funding Source(s):  PAIMI

Self-Advocacy Group Member Individual Successes:
At the request of members in the Ukiah self-advocacy group, we covered the Handbook for Challenging Lanterman-Petris-Short Act Conservatorships. One member found the “How to show you are not gravely disabled” worksheet especially helpful, and was able to get off conservatorship by convincing her doctor that she could provide her own food, clothing and shelter. While most people must go to court to challenge their conservatorship, she was able to avoid a court hearing and now lives in an apartment with a friend in the community and is her own social security payee. Her success is just one example of how people can achieve their goals by learning knowledge and skills to advocate for themselves.
Many San Francisco OSHPSA group members have been interested in returning to work but are afraid they might lose their benefits. After we presented information and materials on “Work and Benefits,” two group members successfully returned to work, and one works at San Francisco General Hospital and the other at Trader Joe’s. In this way, knowledge they learned from the self-advocacy group gave them the confidence and information they needed to pursue their goals.
Peer-Self-Advocacy Goal(s): Goal 1, Objective A (Self-Advocacy Groups)
DRC Staff:  Rob Chittenden, Leo Alfaro
Grant/Funding Source(s):  PAIMI

California Memorial Project (CMP)
CMP Remembrance Ceremonies: The 12th annual California Memorial Project Remembrance Ceremony was held on September 15, 2014. The ceremony honors and respects people with psychiatric and/or developmental disabilities who lived and died at state hospitals and developmental centers without the acknowledgment and dignity they deserved. Ceremonies were held at nine different sites throughout the state, including: Agnews Historical Cemetery; Metropolitan State Hospital; Napa State Hospital; Parkview Cemetery in Manteca; Porterville Cemetery; Ukiah Rural Cemetery; Sonoma Developmental Center; Stockton Rural Cemetery; and Patton State Hospital.
Approximately 500 people attended, some having traveled over three hours to participate. Many community volunteers helped organize the ceremonies, during which participants received information about the CMP project’s history and goals, speakers shared their personal experiences having lived in an institution and a slideshow about the history of the disability rights movement was shown. Representatives from local media agencies, including a bilingual newspaper in Ukiah, were present. Following each of the ceremonies, there was a statewide moment of silence. As reported elsewhere in this report, we tweeted about the Stockton ceremony while at the event.
Peer-Self-Advocacy Goal(s): Goal 2, Objective A (Systemic Advocacy)
DRC Staff:  Alicia Mendoza, Yvonne McGough, Monica Gallegos, Debi Davis, Rob Chittenden, David Solis, Senobia Pichardo, Lisa Hurley, Robyn Gantsweg
Grant/Funding Source(s):  PAIMI

Outreach and Training
Training and Outreach at the “Stronger Together: California Colleges & Universities United for Student Mental Health” conference: At a California Mental Health Services Authority project-sponsored conference on student mental health, we trained on the challenges and legal rights of students transitioning from high school to college, including their right to reasonable accommodations and resources. We also staffed a resource table, where many fact sheets related to mental health stigma and discrimination reduction were distributed. Both students and staff shared their experiences and asked questions, including one about a students’ rights to have a service or emotional support animal assist them by attending classes or otherwise helping them better cope with the stresses of getting a college education.
Peer-Self-Advocacy Goal(s): Goal 2, Objective B (Systemic Advocacy)
DRC Staff:  Lisa Hurley, Robyn Gantsweg
Grant/Funding Source(s):  CalMHSA

Outreach to the Native American Community:
We conducted an outreach at the Sacramento Native American Health Center to inform people about DRC services. Brochures and materials were distributed, and approximately 72 staff members attended, many of whom were not familiar with DRC or the PSA program. Participants had several questions, including one person who asked if people must be legal citizens in order to receive our services. We explained DRC’s services are available to all people in the community.
Peer-Self-Advocacy Goal(s): Goal 1, Objective B (Outreach, Education and Training)
DRC Staff:  Debi Davis
Grant/Funding Source(s):  PAIMI