A Quarter Century of Support
Our department, Support Showcase, highlights the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!
When speech-language pathologist Jerome Kaplan started an aphasia support group in 1990, he knew there was a need, but he never expected it to last 25 years. In June 2015, the Aphasia Community Group in Boston celebrated its silver anniversary with a party featuring brunch, music, comedy and a performance by the newly formed Aphasia Community Chorus.
"In the winter of 1990, I attended a planning meeting for developing a support group for people living with aphasia," Kaplan said. "At that time, there were stroke support groups in the Boston area, but to our knowledge there were none specifically for people facing the unique challenges of aphasia." Spaulding Rehabilitation Hospital donated space for a monthly meeting, and the first session took place in March 1990.
Kaplan has facilitated the group — as a volunteer — since its founding: "I am passionate about the importance of raising awareness of aphasia, apraxia and related disorders," he said. "Support, advocacy and social opportunities are vital to break the isolation imposed by these disorders. Family members and caregivers, sometimes called co-survivors, need as much support — if not more — than people with aphasia."
The Aphasia Community Group (ACG) relocated from Spaulding to Boston University Sargent College of Health and Rehabilitation Sciences in 2006, after reaching out to colleges and universities in the Boston area. This led to the creation of the Aphasia Resource Center (ARC).
Together with the Aphasia Community Group, the ARC offers innovative group treatment programs. The groups are themed to focus on specific areas of interest: conversation, Toastmasters, iPad, film, community connection, book and many other weekly groups offered each semester.
Not only do survivors and caregivers receive individual and group treatment, the ACG and ARC collaborate with college communication disorder programs in the area to provide those students with unique opportunities for training. Their participation is part of their training to become speech-language pathologists.
"In collaboration with the Sargent Aphasia Resource Center, we have developed such innovative programs as an intensive aphasia treatment program, an aphasia community chorus, and have provided numerous opportunities for our members to participate in research, which has led to innovative treatment programs such as Constant Therapy," Kaplan said. The Intensive Aphasia Treatment Program is an annual event in June that offers five-day-a-week, six-hours-a-day treatment for up to eight participants. It is offered without charge.
Through 25 years and over 300 sessions, Kaplan estimates 13,000 people have attended ACG. Current membership is about 150, with 50-75 attending monthly meetings. Guests have included researchers, clinicians, students, performers and community resource providers. "This group is often the first opportunity students from area colleges and universities have to interact with people living with aphasia
In addition to monthly meetings, there are plenty of special events each year:outside a classroom or clinical setting," Kaplan said. "It is also often the first opportunity people living with aphasia have to meet an entire community with the condition."
- Ice cream socials during the summer;
- A holiday party in December features a buffet, musical entertainment and a visit from Santa;
- Picnics in conjunction with the Spaulding Adaptive Sports Program;
- Aphasia Awareness Day on Beacon Hill at the Massachusetts State House in June.
This year’s Aphasia Awareness Day happened two days before the 25th anniversary party. This event brings together the Boston-area aphasia community, along with the four area graduate programs in communication sciences and disorders, to visit state legislators and advocate for the needs of people living with aphasia. It is organized by Karen Kelly, who became an advocate for aphasia and stroke awareness when her mother had a stroke. "This is a great opportunity to promote awareness and has led to new legislation for development of an aphasia study commission," Kaplan said.
Jerome Kaplan (top) and the members of the Aphasia Community Group
The courage shown by ACG participants has had a profound effect on Kaplan. "These individuals are my teachers and my inspiration," he said. "So many have shared that the sense of community fostered by our group has provided them with encouragement and hope, often when the traditional healthcare system offered them very little. Students and colleagues tell me that they chose to work with people with aphasia as a direct result of their participation in our group. That has been truly gratifying."
Try the ASA’s stroke support group finder to see if we have a group registered near you and join our online Support Network for patients and families to connect and share with others who’ve experienced stroke.
This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.