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.

IMPORTANCE Hypothermia at 33.5°C for 72 hours for neonatal hypoxic ischemic encephalopathy reduces death or disability to 44% to 55%; longer cooling and deeper cooling are neuroprotective in animal models. OBJECTIVE To determine if longer duration cooling (120 hours), deeper cooling (32.0°C), or both are superior to cooling at 33.5°C for 72 hours in neonates who are full-term with moderate or severe hypoxic ischemic encephalopathy. DESIGN, SETTING, AND PARTICIPANTS Arandomized, 2 × 2 factorial design clinical trial performed in 18 US centers in the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network between October 2010 and November 2013. INTERVENTIONS Neonates were assigned to 4 hypothermia groups; 33.5°C for 72 hours, 32.0°C for 72 hours, 33.5°C for 120 hours, and 32.0°C for 120 hours. MAIN OUTCOMES AND MEASURES The primary outcome of death or disability at 18 to 22 months is ongoing. The independent data and safety monitoring committee paused the trial to evaluate safety (cardiac arrhythmia, persistent acidosis, major vessel thrombosis and bleeding, and death in the neonatal intensive care unit [NICU]) after the first 50 neonates were enrolled, then after every subsequent 25 neonates. The trial was closed for emerging safety profile and futility analysis after the eighth review with 364 neonates enrolled (of 726 planned). This report focuses on safety and NICU deaths by marginal comparisons of 72 hours’ vs 120 hours’ duration and 33.5°C depth vs 32.0°C depth (predefined secondary outcomes). RESULTS The NICU death rates were 7 of 95 neonates (7%) for the 33.5°C for 72 hours group, 13 of 90 neonates (14%) for the 32.0°C for 72 hours group, 15 of 96 neonates (16%) for the 33.5°C for 120 hours group, and 14 of 83 neonates (17%) for the 32.0°C for 120 hours group. The adjusted risk ratio (RR) for NICU deaths for the 120 hours group vs 72 hours group was 1.37 (95% CI, 0.92–2.04) and for the 32.0°C group vs 33.5°C group was 1.24 (95% CI, 0.69–2.25). Safety outcomes were similar between the 120 hours group vs 72 hours group and the 32.0°C group vs 33.5°C group, except major bleeding occurred among 1% in the 120 hours group vs 3% in the 72 hours group (RR, 0.25 [95% CI, 0.07–0.91]). Futility analysis determined that the probability of detecting a statistically significant benefit for longer cooling, deeper cooling, or both for NICU death was less than 2%. CONCLUSIONS AND RELEVANCE Among neonates who were full-term with moderate or severe hypoxic ischemic encephalopathy, longer cooling, deeper cooling, or both compared with hypothermia at 33.5°C for 72 hours did not reduce NICU death. These results have implications for patient care and design of future trials.

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.

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/ surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care. Pediatrics 2014;133:e1451-e1460

the COUNCIL ON CHILDREN WITH DISABILITIES and COUNCIL ON SCHOOL HEALTH abstract The pediatric health care provider has a critical role in supporting the health and well-being of children and adolescents in all settings, including early intervention (EI), preschool, and school environments. It is estimated that 15% of children in the United States have a disability. The Individuals with Disabilities Education Act entitles every affected child in the United States from infancy to young adulthood to a free appropriate public education through EI and special education services. These services bolster development and learning of children with various disabilities. This clinical report provides the pediatric health care provider with a summary of key components of the most recent version of this law. Guidance is also provided to ensure that every child in need receives the EI and special education services to which he or she is entitled.Pediatric health care providers play a key role as advocates, promoting the well-being of all children in the educational setting as well as in health care. Children with disabilities, currently estimated as 15% of US children, 1 have been entitled to a free appropriate public education (FAPE) since 1975 when the US Congress mandated public special educational services for those with special needs through the Education for All Handicapped Children Act, later renamed the Individuals with Disabilities Education Act (IDEA). 2 IDEA has undergone several reauthorizations and amendments by Congress since its initial adoption, most recently in 2004. This clinical report will review the historic and legal background of this entitlement and will explore the role of the pediatric health care provider in supporting special education services for children in need. It is complemented by other American Academy of Pediatrics (AAP) reports and policy statements addressing related issues in early intervention (EI) and school health. [3][4][5][6][7][8]