We can all recall those parental reminders that kept us on task: “Did you clean your room? Did you brush your teeth? Have you finished your homework? Did you do the dishes?” These reminders are at times helpful but can often feel like nagging. Enter Maria McWhirt, former Harrisonburg resident and mother to five children, two of whom were born with cognitive and physical complications. Dominic was diagnosed with Autism at the age of ten and due to the combination of his unique cognition and his growing need for independence as a pre-teen, Maria soon found herself stepping into the role of nagging mom more and more: “Did you take your meds? Did you remember to use toothpaste?” Although she had good intentions, she found the more she pestered, the less responsive Dominic became. Despite the fact that Maria is a social worker herself, she was unsure how to help her son who so desperately yearned for a stronger sense of autonomy.
But like any teenage boy, Dominic’s diagnosis would not hold him back from the joys of video gaming. Daniel, Dominic’s older brother, despite having been born with severe vision impairments, became a self-taught master coder by the time he was fourteen and found a specific interest in “Minecraft”. This popular online game requires each player to build certain components, such as their characters’ physical attributes, by using basic tech literacy skills. As is the way of little brothers, Dominic desperately wanted to join his older brother but the detailed process for building was too complicated. So Daniel did what any game-loving, code-writing older brother would do and developed a simple app specifically designed for Dominic with step-by-step instructions on how to build his own Minecraft realm. And it worked! Although Maria couldn’t get Dominic to take his medication, she noticed he was now able to complete intricate Minecraft tasks through this simple app. Maria had originally banned Dominic from screen time but as she watched her son excel with the help of this app, she began to wonder if such a tool could be expanded to help her son gain the level of independence he so desired.
Not long after, Maria, Daniel, and other family members began to work on what is now “MPower Me”, an assisted technology program designed for those living with disabilities to help them actualize their potential as independent individuals. The actual lessons, known as MyGuides™, are completely customizable for each user. In fact, this feature is crucial regarding behavioral success as it incorporates unique visual, tactile, and auditory rewards all chosen by the user along with all lesson images and text which gives power back to the user. Maria explained that “MyGuide supports cognitive functioning in two ways – personalized prompting (instead of human prompting where possible); and alternative communication or self-expression of thoughts, feelings, and activities.” This self-determination reverses power discrepancies often faced by those in the intellectual and developmental disability (I/DD) community, including preconceived notions about what someone with a disability is or is not capable of doing. Here at The Arc of Harrisonburg and Rockingham (HR), we believe this power reversal is crucial to developing a sense of empowerment and self-determination.
Connection to The Arc began at the 2018 Annual State Conference when Executive Director, Heather Denman, heard Maria present about MPower Me and the expansion of the software. It didn’t take long before an official partnership between programs had begun. Cindy is one of The Arc of HR’s beloved participants and has been involved with programming for over 22 years. When not out exploring with her Community Engagement Team, Cindy enjoys relaxing at The Simon-Edmonson Center, The Arc’s day support program and hub, doing jigsaw puzzles, and navigating one of the center’s tablets. Her enthusiasm around technology and her desire to master more autonomous skills, made her a great candidate for the launch of MPower Me at The Arc.
In order to best support this new programming, The Arc of HR has hired Raven Knight, a current employee of MPower Me and former peer mentor to Dominic. Raven has been working closely with MPower Me to become their first designated TechMentor™. The first of many to come, Raven’s role as TechMentor is to provide direct one-on-one assistance, guidance, and training for users. TechMentors are crucial components when it comes to the long term success and sustainability of this software. TechMentors are responsible for guiding the user through various assessments in order to tailor individual lesson plans, otherwise known as a MyGuide™. Raven worked closely with Cindy to first identify her independence goal (being able to fold her own laundry) then determined what Cindy already knew of that process, and how her unique cognitive and physical needs would influence her MyGuide design and content. She then worked with Cindy to identify what motivating images, sounds, and videos would be most rewarding. Cindy’s unique MyGuide included step-by-step visual instructions on how to fold a long sleeve T-shirt with direct input from Cindy. She chose her own pictures of the T-shirt to be displayed as well as a Spongebob Squarepants video which automatically appears after she finishes certain components of the lesson, and celebrates her successes and encourages her to continue to the next step.
As most decisions are automatically made on their behalf by caretakers, any opportunity to make a decision, such as picking one’s reward video, can be a significant step of self-determination for people in the I/DD community. “What was so great was that they [users] were starting to advocate for themselves, in part because of their relationship with their TechMentor but more importantly because they began to realize they’re more important and powerful than the device. Our saying Be the Boss of Your Technology helped students grasp the concept of using tech as a tool instead of a toy for entertainment.”
Maria and Daniel know that the words “software programming” can be intimidating for many and considered this when designing MPower Me software. They also knew that the ultimate success of the software would come down to whether or not the user’s natural support system could easily navigate and customize MyGuide lessons. “We’ve made it easier for support staff, family members, and caretakers to help individuals become more independent through this technology,” says Maria. “Anyone can become a TechMentor, and with help from The Arc, we’ll soon be able to provide workshops and online tutorials for families.”
Not only will The Arc of HR be offering direct tech support for program participants but we’ll also be extending this service throughout Harrisonburg and Rockingham by training our Direct Service Professionals to teach others in the area to be TechMentors. This means that family members, caretakers, and staff connected to the I/DD community will be able to work directly with their loved ones to provide sustainable and long term support through MPower Me, and adjust MyGuides as needed. The Arc is also working with JMU to provide internship opportunities for clinical students as TechMentors to work with participants of The Arc and the greater community.
As of today, Dominic is more independent than ever due to the help of MPower Me and a supportive family. He is currently enrolled in a program for computer programming and splits his time living with Maria and his older brother. He uses specific MyGuide lessons that help him with his clothes, hygiene, meds, and morning routine everyday. He even has a MyGuide called “Find My House” that he can show a transportation driver if they get lost or need to call his family while he travels to and from his classes or employment. And Cindy now knows how to fold her own laundry independently without the support of her MyGuide, freeing Raven and Cindy to focus on her next goal. This partnership between accessible technology and creative troubleshooting is just the beginning of a community-wide effort to support and empower individuals living with unique needs in the Harrisonburg and Rockingham area.