OBJECTIVE: To examine the association between receiving adequate care coordination (CC) with family-provider relations and family/child outcomes. METHODS:We analyzed data from the 2005-2006 National Survey of Children With Special Health Care Needs. Eligible subjects were the 88% of families asked about experience with CC, service use, and communication. Respondents also reported on demographic characteristics, health status, family-provider relations, and family/child outcomes. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with outcomes. RESULTS:Among families with children with special health care needs asked about CC, 68.2% reported receiving some type of CC help. Of these, 59.2% reported receiving adequate CC help, and 40.8% reported inadequate CC. Families that reported adequate compared with inadequate CC had increased odds of receiving family-centered care, experiencing partnerships with professionals, and satisfaction with services. They had decreased odds of having problems with referrals for specialty care, missing Ͼ6 school days because of illness (previous year), and visiting the emergency department more than twice in the previous 12 months (P Ͻ .001). Those who reported adequate compared with inadequate CC had decreased odds of the following: more than $500/y of out-of-pocket expenses, family financial burden, spending more than 4 hours/week coordinating care, and stopping/reducing work hours. CONCLUSIONS:Parental report of adequate CC was associated with favorable family-provider relations and family/child outcomes. Additional efforts are needed to discern which aspects of CC are most beneficial and for which subgroups of children with special health care needs. Pediatrics 2009;124:S428-S434
Children with medical complexity (CMC) have multiple chronic conditions and require an array of medical- and community-based providers. Dedicated care coordination is increasingly seen as key to addressing the fragmented care that CMC often encounter. Often conceptually misunderstood, care coordination is a team-driven activity that organizes and drives service integration. In this article, we examine models of care coordination and clarify related terms such as care integration and case management. The location of care coordination resources for CMC may range from direct practice provision to external organizations such as hospitals and accountable care organizations. We discuss the need for infrastructure building, design and implementation leadership, use of care coordination tools and training modules, and appropriate resource allocation under new payment models.
Children and youth with complex medical issues, especially those with technology dependencies, experience frequent and often lengthy hospitalizations. Hospital discharges for these children can be a complicated process that requires a deliberate, multistep approach. In addition to successful discharges to home, it is essential that pediatric providers develop and implement an interdisciplinary and coordinated plan of care that addresses the child' s ongoing health care needs. The goal is to ensure that each child remains healthy, thrives, and obtains optimal medical home and developmental supports that promote ongoing care at home and minimize recurrent hospitalizations. This clinical report presents an approach to discharging the child with complex medical needs with technology dependencies from hospital to home and then continually addressing the needs of the child and family in the home environment.
The medical home and the Individuals With Disabilities Education Act Part C Early Intervention Program share many common purposes for infants and children ages 0 to 3 years, not the least of which is a family-centered focus. Professionals in pediatric medical home practices see substantial numbers of infants and toddlers with developmental delays and/or complex chronic conditions. Economic, health, and family-focused data each underscore the critical role of timely referral for relationship-based, individualized, accessible early intervention services and the need for collaborative partnerships in care. The medical home process and Individuals With Disabilities Education Act Part C policy both support nurturing relationships and family-centered care; both offer clear value in terms of economic and health outcomes. Best practice models for early intervention services incorporate learning in the natural environment and coaching models. Proactive medical homes provide strategies for effective developmental surveillance, family-centered resources, and tools to support high-risk groups, and comanagement of infants with special health care needs, including the monitoring of services provided and outcomes achieved.
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