Firsthand learning provides support to aphasia community

| Shari Lau

A program to help community members with aphasia also serves as a learning opportunity for University of Wisconsin-Eau Claire students.
 
For the past 12 years, the UW-Eau Claire department of communication sciences and disorders and Mayo Clinic Health System in Eau Claire have partnered to offer a camp for people with aphasia, a language disorder that usually results from stroke or brain injury. The Chippewa Valley Aphasia Camp is held at Camp Manitou just outside of New Auburn.

"The camp is designed to foster meaningful participation for individuals with aphasia and their close partners," said Dr. Jerry Hoepner, camp facilitator and associate professor of communication sciences and disorders. "The department of communication sciences and disorders is focused on community service as well as fostering ideas in students. Our collaboration with master clinicians in the community benefits patients and their families as they navigate aphasia, and it benefits our students as they gain practical experience in the field."

This year's aphasia camp, which ran from Sept. 10-13, drew 25 people with aphasia along with their partners and family members from across the United States. The camp was staffed by two UW-Eau Claire faculty members, 25 UW-Eau Claire students, Mayo Clinic Health System staff and community volunteers. During the four-day camp, campers participated in activity sessions such as woodworking, golfing, hiking and sewing, as well as a storytelling session presented by Rob Reid, a senior lecturer in education studies at UW-Eau Claire.

"The camp is not an intervention or treatment program," said Tom Sather, camp facilitator and senior lecturer in communication sciences and disorders. "People with aphasia have been shown to withdraw from social and physical interactions. The camp is designed to get them active and involved by providing a supportive and safe environment where they don't have to worry about explaining their language disorder. Our students play a crucial role in providing supported conversation that fosters participation and builds genuine relationships with the campers."

Building those relationships with campers and their families is what makes aphasia camp so special, said Haley Franson and Madeline Miller, two UW-Eau Claire students.

Franson, a communication sciences and disorders graduate student from Rhinelander, attended her first camp in 2014 and said it was the people who made her want to return again this year.

"I have learned so many things at camp," Franson said. "Not only about aphasia and stroke, but about how the community reacts to people with aphasia. We also talk about personal things such as favorite activities, life events, and their family and friends. There are too many times within clinics when clinicians only look at the medical chart and know the client as their disorder, but that is not who they are. They are people with interesting stories and life experiences that shape who they are. Camp continually reminds me that forming those relationships and understanding the client as a person is essential for successful therapy."

Miller, a junior communication sciences and disorders major from Elroy, attended camp for the first time this year. With previous experience working in similar environments, such as UW-Eau Claire's Camp Campus — an on-campus experience for high school students diagnosed with Asperger's syndrome — she already knew that working directly with people is the best way to learn and use knowledge gained in the classroom.
 
"Aphasia exists on a spectrum," Miller said. "The challenge was determining where each person was on that spectrum. Some people were able to have casual conversations while others needed more visual cues to access language skills. We had to figure out the best way to communicate with each individual and see the whole person, not just the disorder."

The opportunity to work with people with aphasia outside of a clinical setting provided a valuable experience for students and faculty who were able to observe how the campers functioned with everyday activities, Sather said. This gave them an increased understanding of the lived experience and also gave students the opportunity to become independent learners, he said.

"We were pleased to see students take initiative and show high levels of professionalism," Sather said. "They went outside of their comfort zones and embedded themselves with the campers and their families. It was definitely and immersion experience for the students. They walked away with more hands-on experience than they would have received from a full internship. These future clinicians gained a lot of valuable experience."

The Chippewa Valley Aphasia Camp's success has spread, and other camps that follow the same model have opened in Canada and the United States.

"Our camp model is a tangible way of seeing how we can make an impact in a community," Sather said. "With increasing health care costs, this model helps fill a gap in service. Aphasia can become a chronic condition for some people, but it is mostly treated with front-end care. The camp is an effective chronic condition system with 25-40 percent of campers returning every year."

For more information about the Chippewa Valley Aphasia Camp, contact Dr. Jerry Hoepner at hoepnejk@uwec.edu or 715-836-3980, or Tom Sather at sathertw@uwec.edu or 715-836-4895.

Photo captions

Header photo: UW-Eau Claire junior Madeline Miller uses supported conversation techniques while working with camp participant Tim Kersten of Eau Claire.