Analysis of Care Coordination Needs for Families of Children with Special Health Care Needs

Abstract

To identify the diverse services required by families of children with special health care needs (CSHCN) and identify the specific care coordination (CC) efforts associated with the most common types of observed diagnoses. Requested services were categorized into specific sectors, and CC efforts were quantified by observed diagnoses and defined sectors. CC service data were extracted and analyzed from patient encounters over 4 years (2009-2013) in a department database. This included descriptive information about referrals and linkages to medical, dental, and behavioral health providers and to state, private, and community agencies. Diagnostic classifications and CC sectors were defined to enable categorization. A total of 2682 CSHCN records were reviewed. The majority (59%) required services/resources in 1 to 2 sectors, 24% required services/resources in 3 to 5 sectors, and 17% required services/resources in 6 or more sectors. Including informational service, the most frequently required sectors across the study population were education, financial, medical/dental, social connections, and advocacy. Children diagnosed with autism spectrum disorder had the highest needs across all sectors. Most CSHCN and their families use a substantial amount of CC time and effort to secure services from diverse sectors. High-quality and efficient CC requires an understanding of the specific needs of these CSHCN and their families and how to link them to a diverse array of services and resources.