Frontline Initiative Complex Needs
Understand Me, Not My Disability
“I want you to understand me.” These words were articulated by two young adults who have complex communication needs in an interview about how Direct Support Professionals (DSPs) can offer better supports to them.
As a speech pathologist at South Mississippi Regional Center (SMRC), a state agency that supports people with developmental disabilities in community homes and through other programs, I work with many individuals who have complex communication needs. Both Chris and Donna have formal diagnoses of cerebral palsy and mental retardation and require intensive support to complete the activities and tasks of daily living. They wanted to share their insights into how DSPs can help them live a meaningful life.
Chris lives in a community group home and is employed in a work program. He uses a Dynavox communication device, gestures, facial expressions, and a communication book and display to express himself. Donna lives at the regional center and works at White Harbor Industries. Although Chris and Donna couldn’t use words to communicate, they related their thoughts to me through the Dynavox, communication books and displays, gestures and facial expressions. DSPs who know them well verified that I accurately interpreted their comments.
Chris said some of his main problems are talking, walking, and using his hands. Donna firmly denied seeing herself as having disabilities. She stated that DSPs need to see her as an individual with challenges rather than disabilities. “I don’t think of myself as having disabilities. I think about having challenges and opportunities. I want to be good on a computer, go to school and become a teacher who works with babies. My challenge is to achieve these dreams.”
Chris and Donna made several recommendations for how DSPs could better provide supports for people with complex needs. Chris said, “Talk to me. Talk to them. Talk to us more. Show me how to talk on my Dynavox to my friends. I really want to be able to talk on the phone. People can help me get the basic things done. I really want more fun time with my friends.” Donna said she also wanted things that most people want: “I want to spend money in a big department store. I need ways to earn money and this means I need Craig and Marsha [my DSPs] to help me get work that I can do. It’s hard work to help me and my friends, and I thank them.”
Chris and Donna could recount details about the DSPs who made real differences in their lives. For Chris, that person was Kathy, who moved away six months ago. “Kathy doesn’t work here anymore, but she knew what was important to me, like my birthday and making money. She made me feel handsome.” Donna described the influence that Tracy, a DSP, made on her life — “Tracy went with me on a trip to the T. K. Martin Center. This meant I could be evaluated for a communication device. I wasn’t scared because Tracy went. I also had another big trip. Carol and Naomi went with me to Disney World. It was so fun. We played all the time!”
Donna and Chris agree that DSPs can do a lot to help them fulfill their dreams. “Because Tracy helped me get this evaluation, I have new hopes and dreams about what I can do. I want to be a teacher and have a regular life. DSPs can help me get it.” Chris said, “I know it’s hard work, but you go with me like I’m your family. You take me places I love. My dream is to go camping with all the people who have been important to me.”
Like all people, individuals with communication challenges share the need for connectedness with the people, places, and events in their lives. Assistive technology has created remarkable opportunities for advancing communication and connecting with experiences that add depth to life. But no device can replace the essential personal connections with other people. DSPs play important roles in facilitating these personal connections. DSPs who live, work, and learn with Chris and Donna recognize that they can and will go far in life with the essential supports provided by trained, caring professionals.