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Disability Rights California
Disability Rights California
SACRAMENTO, Calif., December 4, 2012 – Against all odds, Pablo Carranza reached age 21in September. A part-time community college student and avid fan of the Denver Broncos, Pablo has severe muscular dystrophy. He can only move one finger independently, but he uses it all day long to type assignments for his online courses or to tweet encouragement to the Broncos, whose posters adorn the walls of his bedroom.
Because muscular dystrophy has left him unable even to breathe or swallow on his own, Pablo needs skilled nursing care to monitor his ventilator, feeding tube and oxygen levels, to clear fluids from his lungs and tracheotomy tube, to transfer him from bed to wheelchair and back, and to bathe and reposition him. While this kind of 24-hour care is often provided in a hospital or sub-acute medical care facility, Pablo has been able to remain at home with his family. The state Medi-Cal program has provided him with one-to-one skilled nursing care since he was 14 years old, both because it is better for Pablo and because it costs considerably less than placing him in an institution.
However, the State has created arbitrary distinctions between children and adults that limit the nursing hours adults may receive. Consequently, when Pablo turned age 21, the Medi-Cal program ordered a drastic cut in his nursing hours even though he is no better than he was before his 21st birthday. If his nursing hours are cut, his family will not be able to care for him at home and he will have no choice but hospitalization or placement in a sub-acute facility. Yet institutional placement poses a life-threatening risk of infection for Pablo, in addition to the painful separation from his family and his life in the community.
Debra Marley, Associate Managing Attorney for the San Diego office of Disability Rights California (DRC), is lead counsel for Pablo Carranza. Ms. Marley said, “The State has capped home nursing care for adults such as Pablo at $180,000 per year, which is at least $90,000 below the actual cost of equivalent care in a hospital or sub-acute facility. This funding shortfall is biased against home-based care and violates the anti-discrimination mandate in the Americans with Disabilities Act that people with disabilities be served ‘in the most integrated setting appropriate to their needs.’”
Co-Counsel Robert Newman of the Western Center for Law and Poverty agrees: “The State does not seem to understand that it will be cheaper to continue Pablo’s current services at home rather than force him into a medical facility. There is an easy fix here – the state has both the flexibility to modify state Medi-Cal rules to provide the nursing hours that Pablo needs, and the duty to do so under federal law.”
The lawsuit (Pablo Carranza v. Toby Douglas) is being filed in federal court in Sacramento on Tuesday, December 4, 2012 seeking an order that Pablo’s nursing hours continue without interruption. Pablo's mother, Leticia, explains, "With the help of the skilled nurses provided by Medi-Cal, we have been able to keep our family together here at home. Now, we are all scared that Pablo will be forced into a hospital or other institution where he will not be strong enough to survive. I hope that the Court will save my son."
Pablo Carranza prepared a statement about his case, in which he says: “When I turned 21 years old this year, the Department of Health Care Services told me that I no longer needed the nursing hours I had been receiving. This made me so afraid and depressed. I no longer wanted to turn 21, but I couldn’t stop it. … I do not want to spend the remainder of my life in an institution away from my family or suddenly die because my nurse was not there to help me. … Like most people my age, I want to explore the world around me by going out, meeting new people, going to college, having a career and I really just want to have a chance to have a normal life. … [To] be forced to go to an institution to live the remainder of my days away from my family … would be no different than spending the rest of my life in prison.”
Disability Rights California: www.disabilityrightsca.org
Western Center for Law and Poverty: www.wclp.org