In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
“You have reached your destination, Medicaid application complete and approved.”
Can you imagine if we had GPS systems to navigate through the maze that is health care? It could lead us all to the destination we need:
- Where do I call to get my child assessed for X?
- Where do I refer a child and their family for Y?
The possibilities would be endless. With the push of a button we could be guided from start, on back roads and through traffic, to finish.
The need to be able to navigate across health and other systems of care for children with disabilities is great. While there are apps emerging that help with pieces of coordination and communication, technology like GPS for the maze does not.
This month’s Pediatrics features “Family Navigation Programs for Children with Autism Spectrum Disorder: A Scoping Review”(10.1542/peds.2024-067947), which describes the vast landscape of human-made models to navigate the maze of systems and services. Maybe it is technology, for once, that has not caught up to humans.
What is a family navigation (FN) program?
In basic terms, an FN program is a way to help people get to where they need to go—to people, services, and supports—staffed by people trained to find and get rid of barriers, offer support and education to families, bring people and systems of care together, and connect kids and families to services.
The number of FN programs for families of children with autism spectrum disorder (ASD) has been on the rise, given the need to fill gaps in care and data coming out that show that the programs can reduce delays in screening, diagnosis, and access to services.
Why did the authors study this and what did they find?
Although there are many FN programs for autistic families, there is so much variation in navigation terms, services provided, navigator roles, and ways to measure outcomes. The authors searched thousands of articles and asked:
- What are the kinds of FN programs for autistic families?
- Do they improve the health of children with ASD?
The authors organize the results into 4 main categories that look at scope of the program, qualifications for navigators, the framework to build the program, how a program is delivered, and how effective the program is.
What can you do with this article?
- If you have a child with ASD, read it to know what is being done or what can be done to help get what your child needs.
- Even if you do not have a child with ASD, read it. You will likely relate to the variation in programs and services, no matter your child’s diagnosis. It may also give you ideas or help make sense of terms you have heard.
- If you are having trouble navigating to the services you need for your child who may be or has already been diagnosed with ASD, use this article to start a conversation with your child’s doctor. Use it to talk about how hard it is to understand the terms or roles in systems of care, or to tell a story that illustrates a barrier to services.
- If you want to try to start an FN program where you live, use this article as a way to start planning discussions with healthcare systems, leaders, community members, and advisory councils.
