Elizabeth Kinsella is a first-year resident in Pediatrics at Indiana University School of Medicine with interests in primary care, hospitalist medicine, weight management, and advocacy.
-Blog originally submitted 7/22/19; patient info in blog text and photo has been changed to ensure privacy
As part of my Community Pediatrics rotation, I was tasked with drawing a “care map” of a child with special health care needs. A care map is a type of bubble chart that is meant to encompass all aspects of a child’s life and all the caretakers the child encounters – whether in healthcare, school, home, or the community. As I sat down to sketch out my patient’s care map, I realized how much more there was for me to learn about him as a person. Yes, I knew his past medical and surgical history, medication list, allergies, family history, and even a few things about his school and family life. Still, there were important details about him that I did not know. For example, I didn’t know which insurance plan he was on, or when and why he stopped going to occupational and speech therapy. I didn’t know specifically what type of supports were available to him at school, or how early his mom had to leave work in order to meet him at the bus stop on time.
In the context of the fact that an estimated 60-80% of health outcomes are related to non-medical influences, often termed “social determinants of health,” I realize how much room for improvement we have in understanding the contextual factors that shape our patients’ every day lives, and, ultimately, their health. This task is even more essential in caring for families of children with special health care needs as I learned during my visit to About Special Kids (ASK)*. These families face the challenges of countless sub-specialty appointments and PT/OT/ST visits, accessing medical and assistive devices for their children, ensuring the school environment is optimized for their children’s learning needs, and so much more.
While ASK illustrated how daunting it can be for a family raising a child with special healthcare needs, they also also offered some solutions for families to make the day-to-day more manageable. The majority of ASK staff are themselves parents of children with special health care needs who have navigated the web of resources for their own children and now work to ensure their knowledge is shared with other families. They match parents up with childcare and resources for date nights so hard-working parents can have a night to unwind. They translate the confusing legal landscape so parents can be sure they’re accessing all of the supports to which they and their child are entitled. They are an inspiring model of generosity, camaraderie, and support.
One of the many reasons I was drawn to IU Pediatrics for training was the opportunity to care for children who are medically complex and have special healthcare needs. Now, only a month in to my training, I see that our ability to care for these children is essentially integrated with the efforts of community organizations, like About Special Kids. Through these partnerships, there is a caring community for our patients and families that extends far beyond the walls of Riley. These partners have already challenged me to be a more thoughtful pediatrician, and I am confident that I will provide better care to my patients because of them.
*ASK is a state-wide not-for-profit organization serving Indiana families who are raising children with special healthcare needs. Their mission is: “Helping children with special needs live better lives by educating, empowering and connecting their families.”
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Holly Paauwe is the rotation coordinator for the Community Pediatrics and Developmental Behavioral Pediatrics residency rotations at IU School of Medicaid. Holly is a family leader and advocate for children with special health care needs and their famili...