Facilitating Global Change
Historically, pediatric feeding disorder (PFD) has been significantly underserved and misunderstood. In collaboration with respected clinicians, researchers, caregivers, educators, healthcare professionals, and more, the PFD Alliance’s advocacy pillar facilitates global change to improve the lives of children with pediatric feeding disorder – including a stand-alone diagnosis, government awareness, and inclusive insurance coverage.
PEDIATRIC FEEDING DISORDER CONSENSUS PAPER
Lacking a universally accepted medical definition or stand-alone diagnostic code locally, nationally, or globally, families navigating PFD often struggle to find effective evaluation and treatment while fighting to receive coverage or financial reimbursement from their health insurance. Meanwhile, doctors and allied healthcare professionals are left to source specific education on their own while battling similar funding and coverage challenges with insurance companies.
In 2015, Feeding Matters began work to identify and define a universally accepted name and stand-alone diagnosis. In March 2016, 17 various disciplines and some of the world’s most renowned thought leaders in pediatric feeding struggles gathered to determine a name, definition, and diagnostic criteria. The result of this pivotal meeting was two years of collaborations and diligent work to write “Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework.” Published by the Journal of Pediatric Gastroenterology and Nutrition in January 2019, the paper declares pediatric feeding disorder the unifying name and stand-alone diagnosis for the field.
ADVOCACY AND EARLY INTERVENTION MODEL (AIM)
Currently there are gaps in the system of care for PFD due to a lack of specialized education for providers, delayed identification and care, limited research on evidence-based treatment, and inconsistent insurance coverage. In addition, a family‘s quality of life is often affected due to financial and marital hardships, as well as a disruption to their child’s education.
Piloted in Arizona, The Advocacy and Early Intervention Model (AIM) is a multi-year, multi-state project that strives to transform the local systems of care in communities across the US by establishing replicable guidelines for the identification and early intervention of PFD, as well as healthcare reimbursement for children with pediatric feeding disorder.
THE THEORY OF CHANGE
The Theory of Change is an adaptive framework utilized by Feeding Matters and the PFD Alliance to remain nimble with the ability to adjust and pivot as the landscape for pediatric feeding disorder continues to shift and transform. An ever-evolving map, the Theory of change identifies main objectives and potential pathways to promote social change for PFD. Once items are identified, they are researched and tested through a lean innovation process before they are integrated into Feeding Matters’ strategic plan.