Over 6 million children in the United States are diagnosed with at least one developmental disability. Their caregivers—parents, grandparents, and the other adults in their lives—have the challenging task of managing the numerous and varied needs of their children. Many of them find that trying to work within often fragmented and inundated systems exerts a heavy toll.
An EDC team with personal experience related to raising children with development disabilities is developing the mobile application Care(giver) Navigator. This innovative, user-centered app is designed to help caregivers track, coordinate, and advocate for services for their children across complex health, mental health, and education systems as well as tend to their own well-being.
The Care(giver) Navigator team is carrying out the following activities:
- Design and test the app for launch in fall 2020. The app will contain the following features:
- Healthcare Navigation: Includes a tool to track medical visits and customizable checklists to help caregivers prepare for upcoming medical visits
- Special Education Navigation: Includes information on special education rights for students and caregivers and state-specific tools and resources for an annual Individualized Education Plan (IEP)
- Tracker: A tool to help caregivers track children’s behavior, symptoms, episodes, or events and related triggers
- Support Locator: Connects caregivers with national- and local-level resources, including affinity and other support groups
- Gain input on the app from families of children with developmental disabilities
- Share the app with a broad audience through articles, blog posts, and presentations