Enhanced family-centered care coordination for children with special needs in the Basque Region

Pediatric care coordination is a patient and family-centered, assessment-driven, team-based activity designed to meet the needs of children with special healthcare needs (CSHCN) while enhancing the care-giving capabilities of families. CHSCN are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. Effective, coordinated care amongst all of the professionals implicated in the care of these children, provided during the first several years of their life, has been correlated improved outcomes for CSHCN and their families.At the center of care coordination are the families and children involved. Effective care coordination with families results in improved coordination and health outcomes, increased satisfaction by all involved, decreased barriers, and fewer unmet needs.Following the model of early intervention adapted in the Basque Region in 2011, with a focus on early intervention for children 0-6 years old, and care coordination between the health, social, and educational services, the model of integrated care for children with special needs, PAINNE (Proceso de Atención Integrada a Niños y Niñas con Necesidades Especiales) was created in 2012.The overall aim of this project is to implement an integrated model of care for CSHCN, ages 0-6 years, using a quality improvement method to enhance the overall care and satisfaction of the children and families affected. This model was initially implemented in Bilbao, and more recently in the entire province of Vizcaya. This model promotes quality care for children and their families in a way that is efficient and sustainable, with the goal of early detection and intervention in situations of risk, ultimately aiming to help these children reach their maximum potential and improve their overall quality of life.In the second phase of this project, with its expansion into Vizcaya, in accordance the quality improvement methodology, it was determined that this model should move to more actively include families. Three specific activities were incorporated into this model to enhance the family-centered approach:1. Sub-processes to address the integrative needs of specific groups of CHSCN are being organized. These sub-processes are centered on the necessities of the children and their families, focusing the areas of improvement and barriers to care that