Blog: Family Connections with Pediatrics
Many families are familiar with the complex and difficult process of getting durable medical equipment (DME) and adaptive technology (AT) like gait trainers, standing frames, and wheelchairs. The process usually starts with a prescription from a physician and an evaluation, and often includes multiple delays and denials along the way. This month in Pediatrics, “It Takes a Village: Building Community with Assistive Technology” by Dosa et al (10.1542/peds.2021-053623) tells a story about another way for families, health care teams, and communities to think about this process, with a focus on equity for people with disabilities. Through the eyes of a parent, a physician, and a young Paralympic athlete, the article offers families and doctors a new way to think about AT as a way for children and youth with disabilities to authentically be part of the community. Both health care teams and community members have a role to play in community inclusion.
The article describes the need for access to AT as a global equity issue that affects personal freedom for people with disabilities. The authors present a different way for the health care team to listen to children’s and families’ needs that can improve the way children and youth feel included in their communities. Children and families are often very involved in their communities, including sports and adaptive programs. The health care team can support inclusion by helping them access the different kinds of AT they use in these places.
What is in this article?
Jason, one of the co-authors of the article, has spina bifida and is very involved in adaptive sports, specifically racing, in his community. Jason’s medical team learned about the types of adaptive equipment and clothing Jason was using in his races, which helped them to meet his needs and support his dream of becoming a Paralympic athlete. Importantly, Jason and his family started early to get him involved in sports and get him access to the equipment he needed to be part of a team. His teammates helped him raise funds for the type of AT that would allow him to participate on the team more fully. The authors share ways to partner with nonprofit and for-profit organizations, volunteers, and others in the community to increase access to AT that can change the quality of a child’s life.
What can you do with this article?
- Talk to your child’s doctors about DME and AT your child may need or already uses in different community settings, like afterschool activities or sports. Take photos of special equipment your child uses or would like to use so you can share at in-person or telehealth appointments. This can help the team think about other ways to support your child’s AT needs.
- At school, an Individualized Education Program, or IEP meeting that includes doctors, teachers, therapists, and community allies or coaches can help with discussions about AT and DME that can help your child feel more included.
- Watch Paralympic sports with your child, so they can think big about the possibilities for participating in sports.
- Consider finding adaptive sports in your community or working with existing sports programs to help them become more inclusive and to think about how to include children with disabilities.
- Start thinking about DME and AT early, and consider different ways to get it, like loan programs, fundraisers, grants, and family support funding through local organizations.