Some 140 researchers and practitioners from across the United States and Canada came to discuss ways to serve individuals who have aphasia, a condition caused by a stroke or brain injury that affects two million Americans. Their focus was the “life-participation approach to aphasia� to help clients regain their speech and meet their personal needs and goals.

AphasiaAccess, a Moorestown, N.J.-based nonprofit that promotes the approach, sponsored the 2017 Leadership Summit March 17-18 at FAIRWINDS Alumni Center.

“The life-participation approach is a paradigm shift in how we think about the kind of life a person with aphasia can have,� said AphasiaAccess President Kathryn Shelley. She learned of the approach after her father had a stroke and she was desperate to find a way to help him.

“A lot of people who have had strokes and have aphasia are sitting at home,â€� said Janet Whiteside, director and founder of UCF’s in the Communication Disorders Clinic and an inaugural member of AphasiaAccess. “We believe it’s possible for people with aphasia to fully participate in life.â€�

Aphasia House was a perfect setting for the summit’s welcome reception March 16. The Central Florida Research Park facility offers therapy for clients with aphasia in a setting that simulates a home. Clients participate in therapy sessions in a comfortable living room, a spacious kitchen and thematically decorated rooms that evoke times in their lives and encourage communication.

For many of the summit participants it was the first opportunity to see Aphasia House in person.

“From the moment I walked in the front door, I was greeted with warmth and immediately recognized that the ‘house’ was welcoming, comfortable and perfectly appropriate for people with aphasia,� said Abbe Simon, a speech-language pathologist with Triangle Aphasia Project, a nonprofit in Cary, N.C.

“It’s thrilling to see it in living color,â€� said Elizabeth Hoover, clinical associate professor and clinical director of Aphasia Resource Center at Boston º£½ÇÖ±²¥. “Janet’s vision has been inspirational. You can’t exaggerate the influence she and this program have had on the aphasia therapy community.â€�

The summit participants also had an opportunity to meet Mark McEwen, a well-known CBS reporter who had a stroke and acquired aphasia in 2005. McEwen went through extensive speech, physical and occupational therapy to regain his speech and life. In recent years he’s spoken to clients at Aphasia House.

“You have to have someone say it’s going to be okay, that there’s hope,� McEwen said. “I want them to come away thinking, ‘If he can do it, I can do it.’ But you have to be stubborn and you have to stay focused.�

The reception launched two days of keynote presentations, breakout gatherings and poster sessions. Among the keynote topics were service operations and evaluation, client motivation in therapy, and using the media to influence communities. Seventeen roundtable discussions, 16 “share and care� sessions, and 39 poster presentations offered forums for the participants to present and learn about the latest strategies and activities that support life-participation therapy.

The schedule was effectively packed with content, but it also provided space for participants to build friendships and just be together, Shelley said.

Whiteside said she thought the summit was “synergistic.�

“It allowed researcher and practitioner to share collective thoughts to spawn new ideas,� she said. “It both energized and applauded the work of those who care for people with aphasia.�

Top two photos by Tim Berry/AphasiaAccess

A new facility dedicated solely to innovative therapy for individuals with aphasia, or the loss of speech resulting from neurologic injury, has been established at the º£½ÇÖ±²¥ with an anonymous $25,000 donation.

The Aphasia House provides speech-language therapy in a setting distinct from a typical medical office. Each room is outfitted to resemble a familiar space in a home, including a kitchen, garden patio and garage. The rooms are designed to encourage natural conversations. UCF graduate students studying communication sciences and disorders provide individualized and group therapy under the supervision of certified clinical faculty.

This is the only intensive program for persons with aphasia in the Central Florida area.

Approximately one million people in the United States, or one out of every 275 adults, have some type of aphasia, according to the National Aphasia Association. The most common cause is a stroke.

The facility is a dream-come-true for its director, Janet Whiteside, a clinical educator at UCF and Chair of the Board of Clinical Educators at the UCF Communication Disorders Clinic. Whiteside is an expert in her field. She received the 2010 Honors of the Association Award from the Florida Association of Speech-Language Pathologists and Audiologists.

“As a graduate student at Vanderbilt º£½ÇÖ±²¥, I saw how effective the use of a home environment was during therapy for children who were deaf or hard of hearing,” Whiteside recalled. “I’ve always wanted to create that type of environment for clients with aphasia.”

She is equally pleased that The Aphasia House is also an educational facility, where students gain experience implementing cutting-edge therapies for the condition. It is conveniently located in the Central Florida Research Park’s Research Pavilion. The UCF Communication Disorders Clinic is housed in the same building.

Thanks to the donation, Whiteside brought the first group of clients to the house this summer. Four individuals with aphasia resulting from either a stroke or brain injury are participating in a six-week Intensive Aphasia Program from June 21 to July 29.

Research has shown that personalized intensive therapy is especially effective in treating aphasia, so each client spends four hours a day, four days a week working directly with one or more student clinicians. The goal of the program is to increase the clients’ communication skills.

Whiteside closely monitors the therapy sessions, noting the clients’ progress and ways to adjust the therapies, which she shares with the students. She and the students also keep the clients and their family members well-informed by providing them with a copy of the protocol and explaining what is being done and why.

The Intensive Aphasia Program will be conducted six times a year in The Aphasia House. Whiteside is currently interviewing stroke survivors for the next session, which runs from Aug. 30 to Oct. 8. Treatment is not free, but the facility takes Medicare and will work with participants to fill out the paperwork for reimbursement.

The donation will help pay for running the intensive programs, education for those working at The Aphasia House and consultation with experts “to help us become the premier facility of its kind in the nation,” Whiteside said.

Those interested in learning more about the program at The Aphasia House may call 407-882-0468 or email www.ucfspeechlanguagetherapy.com for more information.

Approximately 1 million people in the U.S., or one out of every 275 adults, have some type of aphasia, according to the National Aphasia Association. The most common cause is a stroke.

The Aphasia House provides speech-language therapy in a setting different from a typical medical office. Each room is outfitted to resemble a familiar space in a home, including a kitchen, garden patio and garage, and is designed to encourage natural conversations, according to a UCF release. UCF graduate students, studying communication sciences and disorders, will provide individualized and group therapy under the supervision of certified clinical faculty.

The facility is located in the Central Florida Research Park’s Research Pavilion with the UCF Communication Disorders Clinic. The facility director is Janet Whiteside, a clinical educator at UCF and chair of the board of clinical educators at the UCF Communication Disorders Clinic.

An intensive aphasia program, which aims to increase clients’ communication skills, will be conducted six times a year in The Aphasia House. Treatment is not free, but the facility takes Medicare and will work with participants to fill out the paperwork for reimbursement.

Source: Orlando Business Journal, , July 14, 2010