Sixty peers and community members attended a Peer Self-Advocacy workshop at the Annual NAMI California Conference held in Newport Beach on August 25, 2017. The topic of discussion: Stigma, self-disclosure and mental health in the LGBTQ+ community. Facilitated by PSA staff, the workshop focused on the similarities and differences of self-disclosing a mental health disability and "coming out" as part of the LGBTQ+ community.
At the Deaf Community Services Clubhouse self-advocacy group, PSA staff teaches group members about their right to be free from discrimination and receive services in a language they understand. In response to a group member’s frustrating experience at the Department of Motor Vehicles (DMV), the PSA group advocated to have DMV staff attend their meeting to voice their concerns, educate them about deaf culture and learn more about services for people who are deaf and hard of hearing.
A bilingual PSA group member wanted to get out of a locked facility to care for his mother. We provided information about challenging an LPS conservatorship. As a result, “Jose” learned steps to get off conservatorship and move into the community. He developed a discharge plan that included talking with his doctor about his medications and getting third party assistance to show the court he could provide for his food, clothing and shelter. He asked his pastor to help by reminding him to take his medication and identify community support groups.
“Irene” participates in the “El Progreso” self-advocacy group at a mental health clinic. She applied for Section 8 housing a few years ago and recently moved into a third floor apartment. She was happy to have her own home, but she was in poor health due to a heart condition. It was nearly impossible to walk up three flights of stairs. After she told group members about this, the group learned about housing rights and reasonable accommodations.
Luke’s IHSS social worker had a reputation in the disability community for behaving unprofessionally during IHSS reassessments. Luke’s most recent reassessment was no different. The social worker accused Luke’s IHSS provider of fraud and then cut Luke’s hours without actually assessing his needs. OCRA submitted an advocate inquiry to the IHSS office, which resulted not only in a change of social worker and a reinstatement of Luke’s hours, but Luke and his caregiver received a personal apology from one of the IHSS managers. OCRA’s intervention helped Luke keep his IHSS hours while also a
Maxine has lived in a HUD housing unit since 2011. After moving into the unit, Maxine started working. Each year, Maxine reported her income to her non-profit agency landlord, as required by HUD. Although Maxine’s rent increased slightly over the years, in March 2016, she received a notice that her rent was doubling from $409 per month to $819 per month. OCRA contacted the landlord to discuss the rent increase and their notice. The landlord reported that the HUD rent and income formula was programed incorrectly into the computer in 2011. Maxine was therefore only paying 15% of her inc
OCRA forged a new partnership with a local Southeast Asian Community Center. The Bridge of Modesto is located inside a county-owned neighborhood home and from this location, families from the Hmong, Laotian, and Cambodian communities are served regularly. The Bridge offers services and supports in the areas of advocacy, housing, public benefits, education, healthcare, and many other county and state services. With simultaneous translations into the Hmong, Laotian and Cambodian languages, OCRA provided an introduction to OCRA and a substantive legal training about Social Security eligibil
Walter called OCRA for information on how to get help using his new glucometer and managing his health needs after his recent diabetes diagnosis. He stated that his independent living skills (ILS) worker would not assist him because she was not certified or trained. He also thought it was too difficult for him to use the glucometer by himself. He was frustrated with his ILS worker for not being able to help him check his blood sugar levels. Walter thought he needed nursing services to monitor his diabetes. OCRA advised Walter that many people monitor their blood sugar levels without ne
Alfonso is an 8-year-old with average cognitive ability and Autism Spectrum Disorder (ASD). Since age two, he has received behavioral intervention as a regional center client. Because of these intensive interventions, he has been successful academically in his elementary school classroom, with 504 accommodations instead of an IEP. However, he still needs substantial social and behavioral assistance outside of the classroom. Due to his academic success, the regional center reassessed his eligibility and determined that he had been misdiagnosed and no longer qualified for regional center
Ariana is a first-year college student who frequently had seizures during class. One of her professors found her seizures to be distracting, so he insisted that she leave every class early, sit in the hallway, and return at the end of class for the homework assignment. Ariana’s grades began to suffer as she missed more than half of every class. OCRA advised Ariana that her college must make reasonable accommodations for students with disabilities. OCRA advised Ariana that she cannot be asked to leave class because she has a disability.
Mauricio’s SSI benefits were terminated. During the time that 5-year-old Mauricio did not receive his SSI check, his mother had to borrow money from acquaintances and go into debt to pay the rent and purchase basic necessities for Mauricio. Social Security eventually reinstated his benefits and paid the money owed, but a representative payee held the account for Mauricio and would not release any funds to pay the debts that Mauricio’s mother still owed.
The Westside Jam is an annual self-advocacy fair for individuals served by Westside Regional Center, which celebrates consumers and encourages self-advocacy by providing a fun evening of food, socializing, awareness and client recognition. This year’s jam brought dozens of vendors throughout Los Angeles together in one place, which gave clients the opportunity to learn more about services and providers available to them, including OCRA.
OCRA agreed to represent Hyunh at a state hearing after the county reduced his monthly IHSS hours from 195 to 29. The county’s written notice stated that because he is self-directing, according to school records that show that he can follow a set routine in his special education classroom, he is no longer eligible for protective supervision. In preparing the case for hearing, OCRA identified many different school and regional center records which showed Hyunh was actually not self-directing.
Ken was initially placed in an IMD by the regional center on an emergency basis when the regional center could not locate a community placement that met his behavioral needs. OCRA worked closely with the IPP team to identify the necessary services and supports Ken would need to successfully transition back into the community. Ken was recently discharged and is thriving, living independently in his own apartment with supported living services funded by the regional center.
Bruce’s mother contacted OCRA after being denied respite services because he was hospitalized. Bruce had been in the hospital for over a month and needed constant supervision while there. His mother could only leave his side briefly when other family members came to visit and she was overwhelmed. Respite was stopped without written notice of action. Since respite can only be provided in the home, the respite agency had thought they were not allowed to provide respite in the hospital.
The exciting new federal law titled the Stephen Beck Jr., Achieving a Better Life Experience Act of 2014 (“ABLE Act”), is well on its way to being implemented in California in the next few months. For far too long, persons with disabilities have been unable to accumulate savings for much-needed expenses without jeopardizing eligibility for public benefits. This disadvantage will soon change with the implementation of the ABLE Act.
Dante’s mother had been advocating for him to receive occupational therapy services from the school, but had not been successful. OCRA helped prepare Dante’s mother for his upcoming IEP meeting. OCRA provided Dante’s mother with strategies, advice, and questions to ask related to his occupational therapy needs during the IEP meeting. Dante’s mother followed the advice OCRA provided and the IEP team agreed that Dante needed weekly 30-minute individual occupational therapy sessions at school.
Sam lived in locked institutional settings for much of his life. On his own, Sam filed a writ of habeas corpus, seeking his release from a developmental center. Although he was successful in his petition and won his release, his first community placement failed in part because the location and services were not a good match for his needs. Sam was again placed in a developmental center. OCRA and DRC’s regional office staff represented Sam at IPP meetings and advocated for an appropriate community placement and community-based services. A new enhanced behavioral home was developed in Sam
Raul needs supervision at all times and support with all of his daily living skills. Raul received some IHSS hours, but his mother questioned why he was not receiving the maximum 283 hours of IHSS per month. OCRA explained how Raul could meet the IHSS severely impaired standard and how to appeal the county’s decision. OCRA also explained the individual IHSS category definitions to Raul’s mother and showed her how to record his needs for each service in a weekly chart. Once Raul’s mother completed the chart and determined that he met the severely impaired standard, she appealed the denia
After successfully transitioning from a developmental center to community placement, Victor began attending a county special education high school transition program in accordance with the goals in his IEP. Victor initially did very well in his new program. However, following the school winter break, he experienced an illness and an increase in his aggressive behaviors. Victor had an inadequate school behavior plan, and as a result wound up missing months of school. OCRA represented Victor at a series of IEP meetings and requested additional assessments. Following a detailed transition
Reese had significant behavior issues when she lived in the community. The regional center eventually placed Reese in an IMD that was more than 150 miles away from her home community. The regional center notified OCRA of Reese’s IMD admission and provided OCRA with a copy of her comprehensive assessment. Reese stated clearly that she wanted to return to her community. While OCRA advocated for Reese to live in the least restrictive environment, the regional center attempted to relocate her to another IMD, which allowed outings into the community.
OCRA recently contributed to a community training forum that was attended by 100 medical professionals, social workers, and other service providers. OCRA is part of The Diversability Advocacy Network (DAN), a partnership made up of local organizations in northern California. DAN’s focus is to provide information regarding health care changes, the shift to managed care, and long-term services and supports (LTSS) in the local rural counties. DAN advocates on a systemic level for persons with disabilities and older adults to ensure that LTSS systems are accessible.
OCRA has worked closely with a large high school district over several years to educate families of transition-age regional center consumers about alternatives to conservatorship. The district representative shared that she has seen a shift in the attitudes of parents and staff about conservatorship as a result of OCRA’s outreach over the years. Parents and district staff shared that school psychologists speak of conservatorship as a routine or inevitable step for a young person with a disability.
Jocelyn has disability-related behavior incidents at school. Jocelyn’s teacher would send Jocelyn home early every day, which put her mother at risk of losing her employment. OCRA contacted the director of special education who was unaware that Jocelyn’s teacher was sending her home. The school district funded an independent functional behavior assessment by a qualified assessor and developed a positive behavior plan to assist Jocelyn with her behavior at school. Sending Jocelyn home will not be part of her plan.
All families must be prepared for their child to transition from the public school system into the adult world. The goal for any family is to ensure that their child is prepared for the future. For families with children with developmental disabilities it is very important to have the knowledge of what transition to adulthood means and what resources are available to help the child become as independent as possible.
Sean contacted OCRA after he went to pick up his medication prescription and found out he was no longer eligible for Medi-Cal benefits. OCRA assisted Sean in filing an appeal. The appeal stated that Sean had not received proper notice of the Medi-Cal termination and that even if the county determined that Sean was no longer eligible under his current Medi-Cal program, the county failed to review his eligibility for other Medi-Cal programs. OCRA negotiated with the county appeals specialist to show that Sean was eligible for Medi-Cal under the 250% Working Disabled Program.
Chin-Hae received Early Start services from the regional center before age three. When he turned three, his parents received a letter from the regional center telling them that he had aged out of Early Start and was not eligible for services under the Lanterman Act. They did not receive information about their right to appeal, such as the deadline to appeal, where to find advocacy assistance, or the appeal form. OCRA discovered that many other Early Start consumers also did not receive appeal information when they were found not to be eligible for services under the Lanterman Act.
On Saturday June 25, 2016 Scott Barron, Peer Advocate, was joined by regional office Voting Rights Advocate to prepare the Chinese SAGE self-advocacy group for the upcoming presidential election in November. The Chinese SAGE group is a self-advocacy group of young Chinese regional center consumers from across the Los Angeles area. The Vice President of Chinese Sage, Alex White, wrote the following statement: “We have spent time getting to know each other, attending trainings, and social events. We think it is important for Chinese SAGE members to now become good citizens in our community.
Anthony has significant medical needs that require the use of oxygen tanks and catheters for his tracheostomy tube. His durable medical equipment provider began sending incomplete deliveries of his equipment over several months and then suddenly stopped delivering any equipment. Anthony did not receive any notice that the delivery of the equipment would stop. OCRA advised Anthony to contact Medicare, his medical insurance, and ask them to assign a new durable medical equipment provider. Anthony’s parent contacted Medicare and immediately transferred the services to the new provider.
Joe contacted OCRA when he received an overpayment notice that said he owes Social Security more than $45,000. Although Joe has been a regional center consumer for most of his life, Social Security determined that his disability had ended because he earned too much money in certain months. Because Social Security had already paid him for all of those months, he was overpaid $45,000 in SSDI benefits. OCRA assisted Joe in completing forms to show that he had subsidies in his past employment that should have been considered when determining the total amount of his earnings.
For several months, Dustin experienced resistance from his Section 8 voucher landlord in making reasonable modifications to his apartment so he could continue to live safely and independently. OCRA sent Dustin’s landlord a demand letter explaining his disability and new health issues. The letter clarified how Dustin’s health concerns require railings to be installed at his apartment’s front steps and grab bars added to the inside of his shower.
Carl repeatedly received bills for a medical service which he believed his medical insurance should have paid. Carl has both Medicare and Medi-Cal. OCRA contacted the medical provider to make sure they had Carl’s correct insurance information and had properly billed. OCRA also told the provider that state and federal law prevents them from “balance billing” because it accepted Carl as a Medi-Cal beneficiary when it provided the medical treatment to him. OCRA discovered that the medical provider simply had the wrong address for Medicare and Medi-Cal.
After being discharged from the hospital, Julie could not attend school because her immune system was compromised and she had extensive medical needs. Once her health stabilized, her parents notified Julie’s school that she was ready for educational services in her home. The school district demanded that Julie return to the public school setting, threatening truancy action against Julie’s parents if she didn’t return. OCRA attended an IEP meeting to obtain educational supports and services in the home.
Ana’s IHSS social worker told her they were terminating her IHSS benefits completely, but did not send her a written notice of action. Ana’s IHSS provider continued to serve her, but had not been paid from July 2015 to December 2015, despite numerous calls and attempts to contact the county about the issue. OCRA agreed to assist Ana by using the advocate inquiry complaint process. OCRA sent the inquiry, noting the verbal IHSS termination with no written notice of action and no payments to the provider, and requested review of Ana’s case.
Owen is a young adult who attends junior college. He is a very talented computer artist and hopes to eventually get a job in computer graphics and be self-supporting. He was receiving SSI and signed up for the SSI Ticket to Work program with the Department of Rehabilitation. The Ticket to Work program allows recipients to postpone the SSI eligibility redetermination process during the time they are training for the work which will make them self-supporting. There was a typographical error in Owen’s Social Security number on the original DOR application.
After frequently arriving late to his day program, George and his parents wanted to change his transportation vendor. OCRA informed George’s parents of the regional center’s responsibility to provide transportation as written in his IPP. OCRA also informed George’s parents of the right to request a new transportation vendor and to review the referral packets that the regional center was sending to the proposed transportation agencies. George’s parents requested to change the transportation agency and to review the referral packets.
Satoshi is a young child who comes from a monolingual Japanese-speaking family. His parents applied for Medi-Cal on his behalf. The application was denied multiple times due to errors and incorrect information. OCRA appealed all of the notices and contacted the Medi-Cal eligibility worker to correct the errors and misinformation that had triggered the denials of eligibility. Within a week, Satoshi received his notice of eligibility and Medi-Cal card. Satoshi is now able to access the Medi-Cal therapy services he needs.
Hector has Medi-Cal through a managed care plan (MCP). Hector’s doctor requested a speech-generating device for him, which the MCP denied. OCRA researched Hector’s right to have Medi-Cal fund the speech device and advised his mother to file an appeal. OCRA negotiated with the MCP to determine which speech device would be appropriate to meet Hector’s needs. After many conversations with Hector’s educational speech and language pathologist and the MCP hearing representative, the MCP agreed to fund an iPad with the appropriate software to meet Hector’s needs.
Tomas is 61 years old and has profound intellectual disability. He does not speak, but communicates through his behavior. Tomas does not have any family or friends involved in his life and does not have a conservator appointed by the court. Tomas had lived in a developmental center for more than 55 years, since he was five years old. His transfer to a less restrictive community group home setting was well-planned with considerable cross-training between the developmental center staff and the group home to ensure staff understood Tomas’s behavior and could provide appropriate services.
After several years of successfully targeting Spanish-speaking parent groups, the Office of Clients’ Rights Advocacy (OCRA) that serves Regional Center of the East Bay (RCEB) consumers turned its attention to the Asian-American community, which is unfortunately underrepresented. OCRA set out with an ambitious goal to work with a local parent support group called Friends of Children with Special Needs (FCSN) to do three different trainings within a three-month period.
A wonderful turn out of individuals from all over California and even a few from North Dakota came to enjoy the beautiful weather to celebrate the Native American culture on the Big Sandy Tribal Reservation Land in Auberry, CA.
Big Sandy Tribal Council members contacted DRC Outreach staff member, Jesse Lara, to participate their Annual Pow Wow and share information about Disability Rights California’s services. It was amazing to see the large, diverse mountain community come together and experience the culture and beauty of the dancers.
Vietnamese-Speaking Families gathered at a local community church in Orange County to learn about “Your IPP Rights.” The Outreach Unit teamed up with staff from the Office of Clients’ Rights Advocacy (OCRA) to provide one-on-one legal assistance to the 17 Vietnamese-speaking families that came to hear about regional center services.
Disability Rights California confirmed a pattern of excessive and abusive restraint practices at a large locked nursing home serving individuals with psychiatric disabilities. Most of the residents lacked insight into their serious condition and were placed at the facility by publicly appointed conservators or the courts. Several years earlier, Disability Rights California had negotiated an access agreement with the facility’s corporate entity when denied access to records and residents after receiving numerous reports and then witnessing incidents of resident abuse.
Disability Rights California have investigated squalid conditions at a number of unlicensed room and board homes serving adults with psychiatric disabilities across the state. One provider in San Bernardino County was housing residents with psychiatric disabilities in chicken coops which had been converted into barracks-style housing. Residents were using buckets as toilets. Meals, cooked in a makeshift open-air “M.A.S.H. type” kitchen, were served to residents on outdoor picnic tables, rain or shine.
DRC’s IU staff monitored the use of restraint and seclusion practices, as well as the pattern of aggressive acts and serious incidents, at state hospitals. DRC reviewed and analyzed data pertaining to: the use of restraint and seclusion on patients; restraint/seclusion related injuries to staff and patients; injuries to patients and staff from patient aggressive acts; restraint or seclusion injuries or deaths reported to DRC; and other serious incidents suggestive of criminal abuse reported to DRC (unexpected/suspicious deaths, sexual assault allegations involving staff, physical abuse rep
Marianna, a university student, had been unable to obtain the accommodations she needed, including a note taker for her class, working elevators, and a table in each classroom to accommodate her wheelchair. She contacted DRC for assistance.
Ava is a person with a mental health disability who is a client of the Department of Rehabilitation (DOR). She has an employment goal of becoming a human services worker, and is in the process of completing her college degree. Due to her disability, she requires an individually trained service dog that performs tasks to prevent her anxiety symptoms from causing her emotional distress during stressful situations.
DOR denied her request for a trained psychiatric service dog, stating she did not need it in order to complete her employment goal.
DRC collaborated with the Riverside County Elections staff on a voting rights training at the Riverside Easter Seals Office. The training was for participants of their Adult Day Program.
Nevada County is implementing the Voter’s Choice Act. The elections staff had already held the required consultation meeting with the disability community about the Election Administration Plan. That meeting went well but we thought the disability community needed another opportunity to meet prior to the larger public consultation meeting scheduled for the following week. We co-sponsored the meeting with the local independent living center and over fifteen-community member attended the meeting. This was a significantly larger turnout than the first meeting.
A VAAC is a community-based committee that works with local elections officials. The committee meets regularly to help develop strategies to improve access to voting.
Issues such as accessible voting systems, accessibility of polling places, and ways to improve the voting experience are typical areas of discussion. VAAC’s can play a critical role in improving voting conditions for people with disabilities. For VAACs to be successful, it is crucial to have community participation.
Robert, a Social Security Disability Insurance beneficiary, wanted to return to work. He was not sure what type of work he could do. He called WIPA to discuss his employment goals, one of which was to work for himself as a handy man. After talking to him, WIPA created a written analysis to explain how Social Security will look at his self-employment earnings. After reviewing the analysis, Robert was happy to know that Social Security would consider his income, after business expenses, rather than gross income to determine Substantial Gainful Activity.