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.

FOR IMMEDIATE RELEASE

May 24, 2013

CONTACT:
Debra Marley
Disability Rights California
(619) 239-7861
Debra.Marley@disabilityrightsca.org

Maria Iriarte
Disability Rights California
(619) 814-8505
Maria.Iriarte@disabilityrightsca.org

 

Settlement of federal lawsuit means youth with muscular dystrophy will not be forced out of family home into institution

SACRAMENTO, Calif., May 24, 2013 – A settlement with the State means  Pablo Carranza will keep his in-home nursing hours and avoid placement in an institution.  The settlement resolves a federal lawsuit, (Pablo Carranza v. Toby Douglas) filed in December 2012 to stop the State from drastically cutting Pablo's in-home nursing hours when he reached 21. 

Against all odds, Pablo Carranza turned 21in September.  A part-time community college student, Pablo can only move one finger independently. But he uses it all day to type assignments for his online courses or to tweet about his favorite sports teams.  

Because he can no longer breathe or swallow on his own, Pablo needs skilled nursing care. Nurses monitor his ventilator, feeding tube and oxygen levels, clear fluids from his lungs and tracheotomy tube, transfer him between bed and wheelchair, and bathe and reposition him.  This kind of 24-hour care is often provided in a hospital or high-level nursing facility. However, Pablo has been able to stay at home with his family because since he was 14, the state Medi-Cal program provided one-to-one skilled nursing care. Home care is better for Pablo and it costs considerably less than placing him in an institution. 

However, the State created arbitrary distinctions between children and adults that limit the nursing hours adults may receive, often referred to as the “nursing cliff.”  As a result of these drastic cuts, families like Pablo’s often have no choice but hospitalization or placement of their sons and daughters in nursing facilities. This is because their complex medical needs require licensed nursing care, as opposed to unlicensed care from family members who are ill-equipped to handle medical emergencies.  Placement in an institution often puts someone like Pablo at risk of life-threatening infections or other catastrophic medical problems.

Although his settlement does not address the larger systemic problems with the administration of the Medi-Cal program, the State exercised its discretion and did the right thing for Pablo.

Debra Marley, Associate Managing Attorney for the San Diego office of Disability Rights California (DRC), and lead counsel for Pablo Carranza, said, “the State’s decision to provide Pablo with the same level of nursing care as he received before his  birthday is humane from a societal perspective, and logical from a financial perspective.”  Marley explained “the decision also fulfills the State’s obligation under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to serve individuals with disabilities in the ‘most integrated setting appropriate to their needs.’”

Co-Counsel Robert Newman of the Western Center for Law and Poverty agrees: “The decision fulfills the mandate of the ADA, signed into law in 1990 by President H. W. Bush. By providing the necessary nursing care in the home, the State has avoided the need to place Pablo in an acute hospital setting, which would have cost more and led to very poor outcomes for our client and his family.”

Pablo Carranza expressed relief and continued concern about his family’s situation: "It is hard enough worrying about my condition and my future on a daily basis, but the added strain of not being sure whether or not a nurse would show up to take care of me was an incredible burden on me and my family.  I am relieved that burden has lifted somewhat.  I still worry about my brother, who for almost 2 years now has not had enough nursing care.  I am hopeful that the state has changed its approach and will start to view people like us as human beings with real needs and not just dollar figures."

Check out the case settlement agreement and complaint filed by DRC on behalf of Pablo Carranza: www.disabilityrightsca.org/advocacy/cases.htm.

Disability Rights California:  www.disabilityrightsca.org
Western Center for Law and Poverty: www.wclp.org