Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement

• DOI: 10.1542/peds.2023-063809
• Publication Date: 2024-04-10T08:10:09Z
• Authors: Carol Weitzman; Cy Nadler; Nathan J. Blum; Marilyn Augustyn
• Keywords: Equity

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in outcomes, and high rates of foregone adverse experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles improve equity youth NDDs through an evidence-informed consensus-derived process. With the Developmental Behavioral Pediatric Research Network, SAFE cochairs convened consensus panel composed diverse professionals, caregivers, adults who contributed their varied expertise related delivery. A 2-day public forum (attended by members) where community advocates, and/or caregivers individuals presented research, clinical strategies, personal After this, conference held. Using nominal group technique, derived statement (CS) on care, NDD Health Care Bill Rights, Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access planning, (4) diversity, equity, inclusion, belonging, anti-ableism, (5) policy structural change. Relevant representative citations added when available support statements. final CS approved all members Network steering committee. At heart this is affirmation that people are entitled accessible, humane, effective.