Development and Testing of an Informal PA Training Program

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Katie Rodriguez Banister: Partner Success Story

The Research & Training Center on Community Living is grateful to the many staff members from centers for independent living and other community-based organizations and the consumers who partner on our research to enhance community living. Here is one partner’s story.

“I use informal PAs every day. The neat thing about this project, it starts a conversation about personal care attendants, especially for the newly injured. It's a tool, it's kind of a blueprint for living with a disability, and it's a healthy way to problem solve.”

- Katie Rodriguez Banister, President, Access-4-All, LLC, St. Louis, Missouri

Research in Action

Since her spinal cord injury in 1990, Katie Rodriguez Banister has relied on many unpaid (or informal) personal attendants (PAs), including her family, friends, neighbors, co-workers or former classmates.

After participating in the research project “Development and Testing of an Informal Personal Assistance Training Program,” Banister recognized its value: “I sure wish I would’ve had this tool when I was injured 27 years ago. It probably would’ve made the transition a lot easier, and we could smooth over any of the challenges it would take for me as a person needing the care and my parents as the people providing it.”

The informal PA training provides the same type of education that paid personal assistants receive. Researchers Jessica Dashner, OTD, and the late David B. Gray, PhD, collaborated with people with disabilities and their informal PAs to determine which topics were most important. The consumers and PAs identified a common core of essential knowledge and skills, including personal care, body mechanics and transfers, assistive technology, secondary conditions and effective communication.

Dashner noted that family and friends who serve as PAs are usually highly motivated to provide care, so the people taking part in the research study have been very receptive. “Family members want to receive this training,” she said. “They want to do things the right way. They want to make sure that it is safe for them and safe for the person with a disability.”

Dashner and the research team provided the training in small groups to pairs of consumers and informal PAs. The instruction included videos, hands-on practice with different types of skills and equipment, and immediate feedback.

Banister, who is president of Access-4-All, LLC in St. Louis, was glad to be so involved with the research process. “When my accident happened – I was in an SUV that rolled over – my family was lost. We had some great social workers, but even the social workers didn't give us a lot of resources on living with a disability, or the dynamics of a family helping somebody who’s been injured. It’s been wonderful being a part [of the research] because I got to have my say. And what I've learned in the past 27 years living as a woman on wheels, is that the training really needs to continue.”

For more Information:

Jessica Dashner, OTD OTR/L

dashnerj@wustl.edu

314-286-1648

Washington University Program in Occupational Therapy

The contents of this document were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RT5015). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). These contents do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.