UCSF named site of new center for care of people with disabilities

By Camille Mojica Rey on July 21, 2003

The UCSF School of Nursing will become the site of a national Center for Personal Assistance Services, thanks to a $4.5 million, five-year grant from the National Institute on Disability and Rehabilitation Research (NIDRR).

The school competed with other institutions nationwide for funds to create the center, which will focus on personal care services provided to people with disabilities.
“We are thrilled to be creating this new center. Together, the new center and our Disability Statistics Center make UCSF one of the nation’s leading research programs on issues facing Americans with disabilities,” said Kathleen Dracup, RN, DNSc, dean of the School of Nursing.

The new center will support the study of issues regarding the availability and quality of services provided by formal and informal caregivers to some 15 million people nationwide who need help performing daily activities, said Charlene Harrington, PhD, UCSF professor of sociology and nursing and director and principal investigator of the center.

“The whole emphasis here is on independent living and the kinds of support that people with disabilities need to be able to lead active lives, go to school and work, and be part of the community,” said Harrington.

“NIDRR is looking to UCSF to investigate and develop promising practices and interventions that will enable people with disabilities, like myself, to live independently and seek employment opportunities.  The time has come to develop an established system of personal assistance so that people with disabilities can lead productive and fulfilled lives. UCSF will be leading the way in that effort,” said Steven James Tingus, director of NIDRR.

According to Harrington, the new Center continues the School’s history of research and advocacy on issues facing the people with disabilities. “We’ve been tracking these kinds of services across the states since 1994,” she said.

The Center’s faculty members are among the nation’s leading researchers in their field, with more than 15 years of research and policy experience, numerous academic publications, and teaching experience in disabilities studies, Harrington said.

Co-principal investigators for the center include Bob Newcomer, PhD, UCSF professor of sociology; Mitch LaPlante, PhD, director of UCSF’s Disability Statistics Center (DSC); Steve Kaye, PhD, research director of the DSC; and Susan Stoddard, Ph.D. of InfoUse, a Berkeley-based firm specializing in technology that aids people with disabilities. Other UCSF faculty members include Martin Kitchener, PhD, Joe Mullan, PhD, Taewoon Kang, PhD, and Rani Eversley, PhD.

According to Harrington, people with disabilities face many problems when it comes to finding and being able to afford personal care. “There’s a real shortage of workers out there. Even though half of those who have disabilities are under 65, the population is aging and more people have disabilities. The demand is huge and it’s growing, and many do not have access to the services they need,” she said.

Common services provided by a personal care attendant include help with bathing, eating, dressing, walking, taking medication and shopping for groceries, Harrington said.

Given the need and the shortage of personal assistance services (PAS), the Center’s research and advocacy promise to make a significant impact on the future of PAS in this country. The major research projects the Center intends to undertake include studies of:

· the relationship between formal and informal PAS and care-giving support

· state and federal policies and programs

· barriers to accessing PAS

· workforce issues, including recruitment, retention, compensation, training and diversity

· workplace issues, including the use of PAS and assistive technologies in the workplace (Assistive technologies are those products that improve or enhance the functional capabilities of those with disabilities.)

The Center will seek guidance from the community by establishing an advisory committee made up of PAS users, disability advocates, business leaders, independent living center leaders, and academics.

The Center will also collaborate with faculty members at the University of Maryland, University of Michigan, and West Virginia University, as well as with the Topeka Independent Living Resource Center, InfoUse, the Paraprofessional Healthcare Institute of New York and Institute for the Future of Aging Services.

The National Institute on Disability and Rehabilitation Research is part of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services.

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