Measuring the Effects of Independent Living Services for People with Disabilities on Their Participation in Major Life Activities

Background

The process of interacting with personal assistants defines the relationship of person and environment; full participation cannot be assessed solely by reference to either characteristics of the provision of personal assistant services, or to a person’s perceptions of those services.By measuring the effects of service on community participation, people with disabilities can use the results to modify their environments, request service changes, and advocate for personal assistance needs. Thus, people with disabilities can gain control over the selection of interventions (empowerment), assess the effectiveness of the interventions (self-determination of success), and focus interdisciplinary efforts to meet their desire for full participation in activities of their own choice.

Research Questions

What effect do consumer-directed services have on the quantity of personal assistance and also consumer satisfaction and choice and participation in personal care activities?

Purpose and Anticipated Benefits:

By gathering information on the use of consumer-directed personal assistance services, a measurement system can evaluate the effectiveness of consumer-directed personal assistance services.

Who

David Gray, project director, an associate professor of Neurology and Occupational Therapy at the Washington University School of Medicine, oversaw the study and was assisted by Kerri Morgan, MS OTR/L, program manager, (as viewed in the photograph with Gray); Holly Hollingsworth, statistician; Jessica Dashner OTD OTR/L, research manager; Denise Curl, data manager; and Mike Scheller, PTA, research assistant. Kathleen Schammel directed the consumer-directed personal assistance services. Most participants were middle aged, black females with an annual income less than $10,000 who lived in cities. Mobility impairment (80.7%) was the most predominant disability.

For a variety of reasons, 55 participants were terminated from the study, an attrition rate of 33%. The primary reasons for exclusion from the study included participants relocating, not being able to be contacted, illness or death, no longer receiving services through a center for independent living or unable to hire an attendant. 

When

2002-2003

Method

The measurement tools used in this study were developed with input from individuals with disabilities using personal assistance services and obtained from focus groups, staff personal experience, and an initial survey administered to 604 individuals with disabilities as well as subsequent participant survey responses. Collaborating with the research staff were several independent living centers in Missouri, which included Paraquad, Heartland, and Tri-County. A total of 123 people with disabilities who use personal assistance services were interviewed; 45 interviews were completed before and after participation in the Personal Assistance Program at a St. Louis center for independent living. Additional focus groups reviewed survey questions designed to explore the impact of personal assistance services on the lives of people using them.

Results

Personal assistance before and after the Personal Assistance Service Program changed in several ways. For example, the total hours each week of personal assistance increased by 58%. The number of paid hours of personal assistance each week increased by 185%, while the number of unpaid hours each week of personal assistance decreased slightly. The influence on the Personal Assistance Service Program on the participation the people receiving personal assistance was relatively small on the frequency of doing activities but did influence their evaluations of the amount of choice and level of satisfaction in doing some activities that were monitored.  For example, in the personal care domain, the study participants reported improved choice and satisfaction in grooming, dressing, bathing, meal preparation, eating meals but little change in bladder care and bowel care. Assistive technology increased in several activities such as transportation and money management but remained unchanged in socializing, religious activities, and communications after program participation.

The providers of the paid personal assistance after initiation of the Personal Assistance Service program changed from agency employed to individuals hired by the person with a disabling condition (see Table 2). Prior to enrolling into the CIL PAS program, most paid personal assistant services (averaging 10 hours per week per client) were received from the Division of Aging.  After joining the CIL PAS program, most of paid PAS were funded by Medicaid.   Before entering the CIL PAS program, 61.9% of the participants had relatives providing PAS.  Since the program allows the participant to now pay their relatives for PAS the percent after the person was receiving services increased to 71.3%.

With the use of consumer-directed personal assistance service, the number of personal assistance hours increased—both formal hours and informal hours—as did consumer satisfaction and choice. The assessment tools proved useful in tracking personal assistance services

“Taken together, these results show that the CIL PAS program improves choice and satisfaction with the PA provided as well as increases the choice and satisfaction in many activities, in which people with disabilities participate.” [David Gray, project director]

Products

Presentations made: National Institute on Disability and Rehabilitation Research National Advisory Board (2005); NICHD Conference on Health, Work and Families (July 2004); A Roadmap to Provision of the Best AT for Community Participation for People with Disabilities (September 2004); Ground Rounds Washington University School of Medicine – Disability and Policy (December 2004); director of the Federally Funded Health Care Centers (September 2004); Christi Tuleja, Through the Looking Glass (November 2004); Fred Somers, executive director, American Occupational Therapy Association (December 2004); Craig Velozo, University of Florida (December 2004).