RehabWire - Volume 7, Number 4, May 2005

RehabWire for May looks at Personal Assistance Services, or PAS. PAS include assistance in performing tasks that a person would perform for himself or herself if he or she did not have a disability.

NIDRR Projects: Research in the New Millennium.

Lifetime Outcomes and Needs: Refining the Understanding of Aging with Spinal Cord Injury, Craig Hospital (H133A011108) led by Daniel P. Lammertse, MD. Phillip Beatty, Project Officer.
Abstract: This project explores the incidence and prevalence of several health and psychosocial conditions that accompany living many years with SCI. Also studied in this comprehensive, longitudinal, multicenter effort are the services available to individuals with SCI as they attempt to address these conditions throughout their lives. The study expands the longitudinal database, addressing emerging issues of aging with SCI in greater detail, and expands efforts to share findings with a variety of constituents. Personal assistance service, access to and satisfaction with health services, the role of perceived stress and self-reported problems on the presence or absence of secondary conditions and in relation to one’s overall well-being, and trends in quality of life and health are among its research foci.
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Rehabilitation Research and Training Center on Personal Assistance Services, University of California, San Francisco (H133B031102) led by Charlene Harrington, PhD, RN. David W. Keer, Project Officer.
Abstract: This project provides research, training, dissemination, and technical assistance on issues of personal assistance services (PAS) in the United States. Center projects focus on: (1) the relationship between formal and informal PAS and caregiving support, and the role of AT in complementing PAS; (2) policies and programs, barriers, and new models for PAS in the home and community; (3) workforce development, recruitment, retention, and benefits; and (4) workplace PAS models that eliminate barriers to formal and informal PAS and AT at work. A Blue Ribbon Advisory Committee of PAS users, disability advocates, business leaders, independent living center leaders, and academics provide guidance to the project.
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Model Spinal Cord Injury System, Santa Clara Valley Medical Center (SCVMC) (H133N000007) led by Tamara Bushnik, PhD. Theresa San Agustin, MD, Project Officer.
Abstract: The system of care at the Santa Clara Valley Medical Center that extends from the scene of the accident to community reintegration has been developed through a program encompassing services, teaching and demonstration, and clinical research activities. This effort includes community agency staff and consumers and has produced a network of services addressing the needs of individuals with SCI. Based on input from consumers and their family members, community organizations, rehabilitation health professionals, and the rehabilitation literature, the research program studies: (1) the efficacy of peer support, both group and one-on-one mentoring, to improve quality of life, physical and psychosocial status, and community participation and integration; (2) if a regular exercise program can improve the above mentioned community outcomes; (3) the effect of high personal attendant turnover on the above mentioned variables and whether an intervention can decrease that turnover and improve outcomes; and (4) the provision of SCI-specific education and whether improving knowledge improves outcomes.
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Missouri Model Spinal Cord Injury System, University of Missouri/Columbia (H133N000012) led by Laura H. Schopp, PhD, ABPP. Phillip Beatty, Project Officer.
Abstract: The Missouri Model Spinal Cord Injury System is committed to developing, implementing, and evaluating innovative research promoting independent living and community integration among persons with spinal cord impairment. The study focuses on the effect of a consumer-directed personal assistance services training intervention on consumer satisfaction, independent living, and community integration. The study develops, implements and evaluats the in-person Individualized Management of Personal Assistant/Consumer Teams (IMPACT) workshop. Workshop participants receive information on preventing and treating secondary medical conditions and information on relationship issues, such as hiring and firing, communication styles and strategies, assertiveness, and team building. Study objectives are: (1) to determine the effect of the IMPACT workshop on consumer satisfaction, the incidence of secondary conditions, activity, and participation (as defined by the ICF); (2) to determine the effect of the IMPACT workshop on personal assistants’ job satisfaction, job stress and attrition; and (3) to provide online resources to the disability community, including an online personal assistant training manual for consumers and assistants, and an online resources database. Activity and participation are measured by the PARTicipation Survey for persons with Mobility Limitations (PARTS/M).
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New Research: Selections from REHABDATA

Loughlin, D. M., Simon-Rusinowitz, L., Mahoney, K. J., Desmond, S. M., Squillace, M. R., Powers, L. E. (2004) Preferences for a cash option versus traditional services for Florida children and adolescents with developmental disabilities. Journal of Disability Policy Studies, 14(4), 12. NARIC Accession Number: J47335.
Abstract: Presents the results of a survey conducted to assess interest in the cash option versus traditional personal assistance services among families of children and adolescents with developmental disabilities in Florida. Results indicate overall high levels of interest in the cash option, especially among individuals who were willing to pay a worker directly, people who wanted more involvement with services, and consumers dissatisfied with the current services. Authors offer suggestion concerning how to communicate with families when informing them of such an option.

LaPlante, Mitchell P., Kaye, H.. (2004) Unmet need for personal assistance services: Estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology: Social Sciences, 59B(2), 11. NARIC Accession Number: J47548.
Project Number: H133B031102.
Abstract: Using data from a national survey, study estimates the shortfall in hours associated with unmet need for PAS by comparing the hours of help received by people who report that their needs are met with those whose needs are not met. Individuals with unmet need for PAS with 2 or more activities of daily living have a shortfall of 16.6 hours of help per week. The relative shortfall is twice as great for people who live alone as for those who live with others. People with unmet needs are more likely than those whose needs are met to experience adverse consequences including discomfort, weight loss, dehydration, falls, burns, and dissatisfaction with the help received.

Hagglund, K. J., Clark, M. J., Farmer, J. E., Sherman, A. K. (2004) A comparison of consumer-directed and agency-directed personal assistance services programs. Disability and Rehabilitation,26(9), 10. NARIC Accession Number: J47686.
Project Number: H133N000012.
Abstract: Study compared the self-reported outcomes of individuals with disabilities who received PAS through consumer-directed and agency-directed programs. The results indicated that participants in consumer-directed PAS reported more service choices and satisfaction with PAS. Positive outcomes were associated with sociodemographic, health, and service experience variables for both types of PAS programs.

Clark, M. J., Hagglund, K. J., Stout, B. J. (2004) Job experiences of personal assistants employed in a consumer-directed personal assistance service programs. Rehabilitation Nursing,29(5), 5. NARIC Accession Number: J48290.
Project Number: H133N000012.
Abstract: Twenty-four individuals who were employed by consumers as paid personal assistants were interviewed by telephone regarding training and supervision issues, their relationship with the consumer, and their level of job satisfaction. Participants reported being well trained and competent and nearly 62 percent reported receiving very little or no supervision, with 88 percent being very satisfied with the amount of supervision received. They reported high levels of satisfaction with their relationship with their employers and with their jobs in general, despite dissatisfaction with low wages. Authors conclude that further research is needed to identify strategies for increasing the supply of personal assistants.

(2003) Health snapshot: Agency vs. consumer-directed PAS. NARIC Accession Number: O14614.
Project Number: H133N000012.
Abstract: Fact sheet presents an overview of the differences between agency-directed and consumer-directed personal assistance services.

Bowe, F. G. (2003) Legal issues related to caregiving for an individual with disabilities. NARIC Accession Number: O14834.
Abstract: Article examines the implications of national policies on caregiving services provided to individuals with disabilities. The implications for practice, education and training, research, and policy on laws relating to personal assistance services, respite care, medical care, and housing are discussed.

Silverstein, R. (2003) The applicability of the ADA to personal assistance services in the workplace. Policy Brief #10. NARIC Accession Number: O15205.
Project Number: H133B30067, H133B980042.
Abstract: Paper examines whether and under what circumstance the provision of PAS in the workplace is a reasonable accommodation as defined in the ADA. In general, PAS that specifically assist the individual in performing the duties of a particular job are considered reasonable accommodation under the ADA. However, if an adjustment or modification assists the individual throughout his or her daily activities, on and off the job, generally it is considered a personal item that the employer is not required to provide.

(2003) Health snapshot: An introduction to spinal cord injury personal assistant services. NARIC Accession Number: O15364.
Project Number: H133N000012.
Abstract: Fact sheet presents an overview of PAS for people with spinal cord injury. Assistance with performance of activities of daily living can be provided through assistive technology, environmental and structural adaptation, human beings, or trained animals. The differences between agency-directed and consumer-directed PAS are described.

(2004) PAS: Center for Personal Assistance Services Bulletin, 1(2). NARIC Accession Number: O15382.
Project Number: H133B031102.
Abstract: Newsletter provides the latest news on issues relating to PAS, home and community-based services, the PAS workforce, and workplace PAS. In this issue: PAS Center website, new paper published on nursing home transitions, in-home support services update, new online report tracks State systems change activity, expanding workplace PAS in Iowa, PAS focus groups, and selected conferences. Other newsletters are included in the NARIC collection under accession numbers O15917 and O15919.

Turner, E., Revell, G. (Eds. (2003) Special issue: Personal assistance services in the workplace. Journal of Vocational Rehabilitation,18 (2), 74. NARIC Accession Number: R08366. Abstract: Examines issues surrounding the use of PAS as a workplace support for employees with disabilities. These issues include: finding the right personal assistant, federal of state regulations that serve as barriers, disincentives to using PAS in the workplace, and challenges employers face in providing PAS. The articles in this issue are included separately in the NARIC collection under accession numbers J45648 through J45657.