According to the Centers for Disease Control and Prevention, approximately 15 percent of children aged 3 to 17 have one or more developmental disabilities. But for caregivers, accessing support services is seldom a simple task.
Specialized programs designed to support children with disabilities are often difficult to navigate. As children grow, their specific health and educational needs may also change, necessitating new doctors, treatments, and classroom supports. And then there is the need to keep track of medications, appointments, and intervention plans—as well as the numerous documents that accompany each of these services. It can be overwhelming.
EDC’s Shai Fuxman, Sarah Jerome, and Chelsey Goddard have each experienced these complexities firsthand as caregivers for loved ones with special health and educational needs. Now, they are using their knowledge to build a mobile phone app to help others in the same situation.
Called Care(giver) Navigator, the app will “equip caregivers with the information, tools, and resources they need to better advocate for, identify, and track services for their children,” says Fuxman, a health researcher at EDC. He compares Care(giver) Navigator to Waze, the popular traffic navigation app.
“Waze can’t control the weather or accidents; it can’t control the factors that affect your drive,” he says. “But it can help you to navigate those events in a way that optimizes your journey. This app is like that. It isn’t going to change the health care system or the education system, but it is intended to help you navigate these systems so that the journey is as successful and smooth as possible.”
One of the Care(giver) Navigator tools, for example, will allow parents to track the dosing and timing of prescription drugs. Another will link to common forms, policies, and websites that parents often need to access special education services. The app will also contain tools that prioritize caregivers’ mental health and wellness, including a group support locator and guided meditation clips.
Care(giver) Navigator was the winning innovation in EDC’s first-ever Pitch Competition and draws heavily on team members’ own experiences. Fuxman, for example, recalls feeling ill-informed by the process with which his daughter, who has epilepsy and developmental delays, was placed into a special program in kindergarten. He and his wife didn’t know what programs existed—or whether they even had a say in her placement. And when their daughter struggled to make progress through the first few months of the school year, they began to wonder if she was getting the supports she needed.
“When my daughter was transitioning into kindergarten, we didn’t even know what questions to ask about her placement,” he says. “There was no list of programs that the district offered. And once I started talking to other parents of children with special needs, I learned that this is a common issue.”
This experience inspired the team to include within the app a list of questions that parents should ask during their IEP (Individual Education Plan) meetings with educators.
Goddard, whose teenage son is on the autism spectrum, says that helping caregivers deal with the stress of caring and advocating for children with disabilities was a priority in developing the app.
“If you are not able to take care of yourself and get the emotional and mental health support that you need, you are only so helpful to your child,” she says. “You can’t ignore your own needs and still expect that your child is going to have the best outcomes.”
A beta version of Care(giver) Navigator will be ready by September 2019 and will focus on caregivers of children with developmental disabilities. Future iterations of the app will expand to other areas of special needs. And while there are already some apps that help parents track medications or chart a student’s progress toward IEP goals, Goddard believes Care(giver) Navigator is different, because it brings health, education, and caregiver well-being together in one place.
“There are a lot of challenges families can face in caring for a child with a developmental disability,” she says. “But the reality is that most days when we go home, these children are just our kids. We love them, and we want to make some space to remember that. So if this tool can take away some of the struggles that our families experience when dealing with complex and often fragmented systems of care, then I think we will have created something remarkable.”