American Action Fund for Blind Children and Adults
Future Reflections Winter 2021 GROWING UP
by Karla Antonelli and Anne Steverson
From the Editor: Blind and low-vision children are not eligible for rehabilitation services until age fourteen, but the road toward independence must begin far earlier. In this article, the authors describe the development of an app that can help parents chart their children's progress and guide them along the way.
Authors’ Note: The contents of this report were developed under a grant from the US Department of Health and Human Services, NIDILRR grant 90RT5040-01-00. However, these contents do not necessarily represent the policy of the Department of Health and Human Services and should not indicate endorsement by the federal government.
It takes a lot to navigate this big, wide world, and knowing where to get good information and guidance for the journey can be a huge help. For any parent, having information about their child's milestones and resources is key. This can be especially true for the parents of a child who is blind or has low vision. Information comes from many sources—doctors, schools, other families, and blind adults. In some cases, however, these sources may be scarce or may not yet have the latest and best information available. What is the solution?
One new resource to help meet this challenge is an informational app called 4to24. We developed the app here at the National Research and Training Center on Blindness and Low Vision (NRTC) at Mississippi State University. The idea grew from another popular resource offered by the NRTC, the Transition Activity Calendar (TAC). The TAC offers activities for young people to accomplish at particular times through middle and high school in order to prepare for college. The 4to24 app greatly expands upon this idea. It goes beyond strictly "transition" topics to include such areas as academic progress, social skills, technology skills, and independent living milestones—almost everything you need to know to become a successful, independent adult.
At the NRTC we believe that transition success starts early. We created app content that parents can begin to use when their child is four years old. It continues all the way through high school, college prep, college or other training, and early career—all the way through age twenty-four.
What does the app provide over all that time? A team of knowledgeable writers who are teachers and service providers created more than four hundred informational modules on all kinds of topics like those mentioned above. That's enough to have around two per month delivered over time, based on the child's age, grade level, or progress in a particular topic area. To help us determine the best information to include, we met with an advisory board that recommended topics to consider. We also met in focus groups with parents of blind and low-vision youth to ask for their input.
Our meetings with parents focused on how parents received information related to transition and transition planning, whether they felt they received enough information, and which areas related to their child's development were of greatest concern. Their concerns included helping their child develop social skills such as communication and making friends, talking with their child about puberty, and preparing their child for college. Concerns related to employment included disclosure of blindness, self-advocacy, and accommodations. As a result, we included modules about these topics in the app at varying skill or age-appropriate levels.
The focus groups highlighted the need for us to make sure the information in the app is relevant to the family's or child's stage in life. We created a benchmarking process to estimate the child's skill or experience level in particular areas. This process helps determine which modules are most relevant when parents start the app. Many children and young adults are at widely varied levels in skill areas. Some may have amazing technology skills but need to work on their travel skills. Others may be doing great in academic areas but could use some focus on managing their daily schedules. Rather than using a one-level-fits-all approach, the app includes a set of skills to check off when the user first creates the app account. The app has an automated system that will take the completed checklist and determine the user's starting point for the first module in each topic area. It will then allow the user to progress from that point forward as he or she uses the app.
Now that we have good information to provide and can start the user at a point appropriate for the child's skill level, how do the modules work? Each module offers a brief description of a topic and explains why it's important. (Why learn to pick out your own clothes, use PowerPoint, or learn about bus routes?) The module then provides a list of activities the parent and child can do to learn or practice skills. Finally it links to more resources and information on the subject.
Once finished with a module, the user marks it as complete. Another module will be delivered to his or her app in the next day or so. Families can track their progress over time and look back at areas they've completed, or they can do a refresher on a topic at any point. When a new module is available, users will receive a push notification to their phone as a reminder to check in. Notifications can help keep them engaged.
The 4to24 app isn't a curriculum, and it doesn't replace school or services provided by teachers, instructors, counselors, or mentors. Instead, it offers information about which services and resources are out there, and it suggests what kinds of activities and milestones are recommended at a given age or skill level. It offers parents and youth some things they can do on their own or things they can talk about and plan to work on with their school, teachers, counselors, instructors, or other service providers.
With some user testing done with parents and youth along the way, we finished the first version of the app early in 2020. We then began a six-month field test with parents and youth who used the app in real time and let us know what they thought. We've received some great feedback, and we're working on final edits before the app goes public. So far the overall response has been quite positive.
Parents who participated in the field test commented that the information provided in the app was helpful and needed. One parent told us, "I have a better understanding of how to help my daughter become more independent as she ages. She can now order and pay for her own meals in a restaurant and is so happy about being able to be independent when she goes to a restaurant with her friends from her youth group." Another participant said, "Parents need this information badly—there are so many parents who just don't know all the hurdles for our kids and just hope the school is doing what it should be; sadly, they aren't either sometimes."
Parents also found the modules provided opportunities to have conversations with their children and reinforce ideas previously discussed. For instance, one parent commented, "I love that this app helped provide activities and talking points with my child." When asked about what was helpful, another parent said, "Self-determination and goal setting. It was good for him to see another resource encouraging this."
We expect the 4to24 app to be ready for public release early in 2021. Like all products created by the NRTC under federal funding by the National Institute on Disability, Independent Living, and Rehabilitation Research, it will be free of charge. The app will be available to parents of youth ages four to twenty-four and to youth ages sixteen to twenty-four. It will be available on iOS and Android native platforms for smartphones and other devices, and as a web app for use on computers. We hope the app will be a useful and timely resource for youth who are blind or have low vision and for their parents, who are doing that whole life-navigating thing through these interesting times.
For more information about the 4to24 app or to receive updates on this project, contact Karla Antonelli from the NRTC at [email protected]. Correspondence concerning this article should be addressed to Karla Antonelli, NRTC on Blindness and Low Vision, PO Box 6189, Mississippi State, MS 37962. Call 662-325-2001 or email [email protected].