As one of about a dozen community-based aphasia centers across the country, Voices of Hope for Aphasia is making an impact in our community.
Aphasia is a disorder that causes a loss of the ability to understand or use language. This condition often follows a stroke or injury that damages the portion of the brain that processes language.
Over 2 million Americans have aphasia, which is more common than Parkinson’s disease, muscular dystrophy, and ALS combined. Yet, only about 9% of people have heard of aphasia and can identify it as a language disorder.
People with aphasia tend to withdraw and self-isolate. According to the National Institute on Aging, prolonged loneliness and social isolation can be as damaging to one’s health as smoking 15 cigarettes a day.
Isolation can also lead to heart disease, drug addiction, obesity, and other significant health issues. These issues decrease the quality of life while compounding medical costs. In addition, for those unable to communicate, it creates barriers to health care services and resources, increasing time in the hospital and loss of income. It causes difficult issues for the person with aphasia and their loved ones.
Hope For Those With Aphasia
Mike Caputo, a Largo resident and the founder of Voices of Hope for Aphasia, realized the lack of awareness and resources for people living with aphasia after he survived a stroke that limited his ability to speak and use the right side of his body. He knew that if he were struggling, others would be too.
In 2012, Mike created Voices of Hope for Aphasia to provide a place where people with aphasia and their families can find opportunities to engage in life and build a social network. The organization also raises awareness and provides education about the condition. Voices of Hope for Aphasia gives people with aphasia an opportunity to come together and come alive. Only about a dozen community-based aphasia centers across the country are providing these services, and Voices of Hope for Aphasia is now one of the largest.
What began as meetings in a small office once a week has expanded to programs offered five days a week, in St. Petersburg, Dunedin, a new location in South Tampa, and online.
A Place Where Everyone Is Heard
Voices of Hope for Aphasia offers structured activities for those affected by aphasia; the following are three of its six programs. Living! with Aphasia offers group activities for members to participate in and socialize while practicing communication on topics of interest. Max Adventures organizes group outings to local museums, restaurants, baseball games, and more. Aphasia Gives Back provides opportunities for members to engage in events and activities that give back to the community. There are also programs for the whole family to connect and develop communication techniques and support systems.
In the summer of 2021, Voices of Hope for Aphasia opened its first full-time facility. Before that, the organization relied on donated space from various partners and donors. Now, the Voices of Hope hub has multiple rooms for programs and meetings, and it can remain open as a safe space for members even when the programs aren’t in session.
Programs With Value Beyond Measure
According to its members, Voices of Hope for Aphasia’s value can’t be overstated. The time following a stroke or traumatic brain injury can be stressful, confusing, and isolating. Most families living with aphasia aren’t even aware that the term exists, let alone that there are resources to help.
When members discover Voices of Hope for Aphasia, it can be life-changing. “He comes alive when he’s with the groups,” says Ann Dingman, describing her husband and long-time member, John Dingman. John expresses that he would be sitting at home watching TV without Voices of Hope for Aphasia. Instead, he is making friends, has taken up painting, and frequently engages in the community.
John says before Voices of Hope for Aphasia, “… I would just sit and listen.” The programs have made him more confident, independent, active, social, and ready to initiate conversation. When asked about his favorite part of Voices of Hope, John responded, “Everything. I could be here all day, every day.”
Voices of Hope for Aphasia programs could not have the success they do without the staff, volunteers, board members, donations, and funding from organizations like Pinellas Community Foundation. Debbie Yones, Voices of Hope for Aphasia’s executive director, has been involved with the organization since its inception. She explains that most of the organization’s funding pays for skilled professionals, including speech therapists and artists, who make the programs possible.
The board of directors is committed to covering overhead costs so that all donated funds can go directly to the programs. “The power of the program is in the people that run it,” according to Debbie, and the program leaders create engaging and valuable experiences for everyone involved.
Voices of Hope for Aphasia regularly monitors the quality and impact of its programs. Through aphasia-friendly quality of life measures and program feedback, the organization knows it is making a difference.
Below are some examples of Voices of Hope for Aphasia participant feedback.
“People should know that this group is a must for anyone recovering from a stroke.” “When I saw this, it was kind of a miracle.”
“This is going to work out so well for me too! While she’s with the group for two hours, I am taking a stress-reducing walk through downtown Dunedin. I know in my heart this is going to work out so well.”
“I used to think, ’Why me?’… Now, I am inspired and wake up eager for the day.”
A Growing Need for Awareness
As for challenges, the biggest one facing Voices of Hope for Aphasia is outreach. As aphasia is a largely unknown disorder, reaching individuals and families who need these services is challenging.
Debbie says that most of their new members come from speech therapist recommendations, partnerships with local hospitals and rehabilitation centers, and awareness spread by staff and members. However, many families live with aphasia for years and don’t know about the resources.
For Debbie, there is nothing more rewarding than getting a phone call from a family member and hearing the relief in their voice when they realize that Voices of Hope is here to help. Seeing the joy and welcoming energy from the group when new members arrive is an unforgettable experience.
Debbie also expresses that fundraising for a disorder that isn’t well understood, despite its prevalence and devastating impact on individuals and our community, is challenging. “The fact that Pinellas Community Foundation will take the time to understand what we do and the impact [of the funding], to me, is priceless,” explains Debbie.
In the last several years, grant funding from PCF kept Voices of Hope for Aphasia members connected during the pandemic. Grants from PCF demonstrate the foundation’s trust in Voices of Hope for Aphasia and “trust in the growth and the health of the community,” says Debbie.
Support Those Living With Aphasia in Pinellas County
By donating to the Senior Citizens Services Fund at Pinellas Community Foundation, Voices of Hope for Aphasia and similar organizations can receive grant funds to further their important work in our community.