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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.”