California’s protection & advocacy system
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Two-year-old Natane needed a corneal transplant and retinal surgery but her family's HMO refused coverage. After DRC Senior Attorney marilyn Holle intervened, the surgery was covered and Natane, now four years old, nagivates her world with much more mobility. In fact, the surgery was so successful, doctors have just operated on her other eye.
Avril Banyan, who was sheltering at a rescue mission, was asked to leave. Because of a psychiatric disability, she was considered "too sick" to participate in the required program of the mission. Since the only place she had to go was back home to her abuser, this discrimination created a life and death situation for Avril. DRC attorney Ann Menasche filed suit and settlement is in process.
Letter to DRC: "You may not remember me but my sister and I will never forget you." That was how Mary started her letter to us in the fall of 2013 about how well her sister, nancy, is now doing in a nearby small group home and how thrilled they both are to reconnect. Nancy spent nearly 20 years in a locked facility in Humboldt County, then was transferred to another smaller institution in the Bay Area. Due to many years of apparently too much medication, she lost her ability to walk and her interest in communicating. She was in the smaller facility for another 10 years. After watching her sister deteriorate, Mary wrote to DRC where she was connected to Lynne Page, Clients' Rights Advocate. Lynne helped Mary request an Individual Program Plan (IPP) for Nancy and got the IPP proces moving forward. An IPP has goals agreed to by the consumer, the consumer's support staff and the regional center, to make sure the consumer is being treated in the least restrictive setting possible.
After Nancy was moved to the group home in another region, Arthur Lipscomb became he radvocate. He visited Nancy and spoke with her about being in the group home - she said she especially liked being able "to see her sister." Mary concluded her letter to us: "After your intervention, Nancy was started on an IPP, then taken off medications, and moved to a group home not far from me, and where she enjoys community center activities. She is walking again -- her transformation is a miracle. We are taking my sister to Los Angeles for family visits over the holidays."
When Teo first began attending La Hora del Cafe, a weekly DRC-supported peer self advocacy group, he was homeless and unemployed. Now living in an apartment and partially supporting himself through his artwork, Teo says his interactions with this group gave him the support and confidence to develop the skills he needed to rebuild his life.
David Karchem, a computer technology designer/manager for 30 years and who once worked on cutting edge spacecraft, survived a stroke. It wasn't possible to continue as a manager of software development, so he looked into other careers. During his rehabilitation, he became fascinated by software and robotic devices that help reconnect brain synapses after stroke or brain injury.
He requested support from the Department of Rehabilitation (DOR) to pursue these interests as a second career. Professionals in this field recommended a masters degree in Assistive Technology, but his DOR counselor stated that a second certificate was sufficient. His DOR case was closed without resolution.
When he contacted DRC, Rebecca Hoyt, a Client Assistance Program (CAP) advocate, helped him develop a new Individual Plan for Employment with a more comprehensive scope of services. Mr. Karchem was accepted into the renowned Masters of Science in Assistive Technology program at California State University at Northridge (CSUN).
Shown here is Ran Chen, celebrating passing his citizenship exam. After his state financial assistance abruptly stopped, Ran contacted us and Office of Clients' Rights Advocacy (OCRA) attorney Jackie Dai found he could qualify for a Cash Asistance Program for Immigrants (CAPI) with disabilities. Shortly after receiving the benefit, he passed his citizenship exam. As a citizen, Ran will be eligible for social security beneftis and other programs that can help him live in the community.
In 2012 when Raqel Washington, a young adult, was placed in a developmental center, Hanna Liddell, Clients' Rights Advocate was informed. That happened because DRC was successful in changing the law to limit institutionalization and ensuring that clients' rights advocates are notified of placements in developmental centers. Hanna advocated that Raqel leave the center and she did so in August 2013 with the full support of her Individual Program Plan team.
Jimmy Pereira, employed by his school's WorkAbility program, kept close track of his work hours. He knew he was not being paid for all the hours he worked and reported this to management, but there was no response. He contacted us and Clients' Rights Advocate Leinani Walter and Assistant Clients' Rights Advocate Christine Hager helped Jimmy draft a letter demanding back wages. The program repaid the wages. Pereira's persistence and courage were recognized by the DRC Board in 2013
DRC facilitates self-advocacy groups for people with mental health disabilities.
The El Progreso Self Advocacy Group has been meeting at a Los Angeles mental health clinic. For the first year that Lilia attended the self-advocacy group she arrived late, left early and did not participate. Gradually, she began to express her concern for others as stories were told. Senobia Pichardo, a Peer Self-Advocate trainee, worked closely with Lilia until she felt comfortable enough to talk about herself.
Finally, Lilia was able to tell the whole group about the disrespectful and hurtful way she had been treated by the clinic's mental health staff when they placed her in a locked facility against her will.
Lilia learned that the clinic staff had been wrong to treat her this way, that she deserved to be treated with respect. This was the turning point in Lilia's struggle to take charge of her own mental health treatment. Lilia began attending board meetings and helped to convince the mental health clinic to provide a translator at meetings so that Spanish speaking mental health consumers can participate fully. In honor of her successful journey in self-advocacy, Lilia Valentin received a recognition award from the DC Board in 2012.
When he turned 21, Pablo Carranza, who has muscular dystrophy, got an unwelcome birthday present: notice that his home-based nursing hours would be reduced. In 2012, we sued the Department of Health Care Services because it was withdrawing home-based nursing hours from this young man simply because he had become an adult. We helped Pablo fight this policy because it could force him into a hospital or nursing home to receive enough nursing hours to survive.
Following an administrative hearing that awarded Pablo eligibility for a waiver, in April 2013 we settled the case. Pablo and his family are delighted that he can continue receiving critical nursing care at home. DRC is working to defeat this arbitrary policy statewide, since it both punishes youths for reaching adulthood, and threatens thousands with a permanent loss of independence. A policy that forces people into nursing homes to receive services violates the Americans with Disabilities Act.
Because of his disability, Pablo cannot breathe or swallow on his own. One-to-one care has been provided since he was 14 and includes monitoring his ventilator and feeding tube, and clearing fluid from his lungs and tracheotomy tube.
Pablo doesn’t let his disability limit his accomplishments. He says, ”I can only move my eyeballs, tongue and left thumb. Despite this, I graduated from high school and began community college.” Nor is he willing to limit his opportunities by being forced to move into an institution. He says, “I understand that my disability is progressive and will eventually prove fatal and that is why the time I spend with my family is so precious to me. I do not want to suddenly die because my nurse isn’t there to help me. When I heard that I would lose hours when I turned 21, this made me so afraid and depressed that I no longer wanted to have that birthday. But I couldn’t stop it. To live ... in an institution would be no different from spending the rest of my life in prison.”
“I’m free, I’m really finally free,” Heidi Smyers, 25, said, celebrating with Leinani Walters, her Clients’ Rights Advocate, as they walked out of the court house in January 2012. The judge had just terminated Heidi’s conservatorship, agreeing with the letters of support from her employer, teachers, regional center staff and counselor that DRC’s Office of Clients’ Rights Advocacy (OCRA) had assembled.
As Heidi explained, she can provide for her personal needs and manage her finances, and had no need for anyone to make decisions for her. The court decision ended a long struggle for Heidi to remove her conservator, an adoptive parent, who had prevented her from living an independent life like other young adults.
In 2004, at age 17, Heidi, a client of the Valley Mountain regional center, began meeting with OCRA for support in being allowed to make friends independently. Leinani remembers Heidi in those days as very shy, yet determined to let people know that she could be trusted to make her own decisions about her life. Leinani said, “One teacher told me Heidi could be doing a lot more on her own. That made me want to investigate her situation.” Next, Leinani helped Heidi in regional center meetings to write a new Individual Program Plan (IPP), spelling out a path to independence.
For the next several years, OCRA advised Heidi on her legal rights to: mobility training and job training that led to her gainful employment; services supporting her financial independence; counseling to support her confidence in pursuing independence; and community care placement supporting her transition to her own apartment.
In October 2012, DRC’s Board presented Heidi with a Client Recognition Award in honor of her hard fought achievements.
Through intervention and negotiation, Disability Rights California helped David Ramirez to be reinstated to his job. David was doing well at his vocational training program in the Imperial Valley. But everything changed when two supervisors began pressing him to sign false statements criticizing the conduct of his vocational trainer. He was harassed at work and received threatening phone calls at home from a supervisor. When he refused to cooperate, he was transferred to a less desirable worksite.
David contacted DRC for help and we investigated. He was told he would lose his job if he did not reveal to his supervisors his conversations with DRC. We were able to work with David and staff at the vocational center to resolve the situation: David was reinstated to his former job at the original worksite and the supervisor who called him at home is no longer employed by the program. The vocational facility agreed to change policies and provide training to staff.
As DRC investigator Ricardo Jauregui summarized in an award ceremony in December, “As a result of David’s courage, a culture of consumer empowerment and respect has been fostered in this workplace.”