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.
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
Children with developmental disabilities often have unmet complex health care needs as well as significant physical and cognitive limitations. Children with more severe conditions and from low-income families are particularly at risk with high dental needs and poor access to care. In addition, children with developmental disabilities are living longer, requiring continued oral health care. This clinical report describes the effect that poor oral health has on children with developmental disabilities as well as the importance of partnerships between the pediatric medical and dental homes. Basic knowledge of the oral health risk factors affecting children with developmental disabilities is provided. Pediatricians may use the report to guide their incorporation of oral health assessments and education into their well-child examinations for children with developmental disabilities. This report has medical, legal, educational, and operational implications for practicing pediatricians.
The vast majority of children and youth with chronic and complex health conditions who also have intellectual and developmental disabilities are cared for in their homes. Social, legal, policy, and medical changes through the years have allowed for an increase in needed support within the community. However, there continues to be a relatively small group of children who live in various types of congregate care settings. This clinical report describes these settings and the care and services that are provided in them. The report also discusses reasons families choose out-of-home placement for their children, barriers to placement, and potential effects of this decision on family members. We examine the pediatrician’s role in caring for children with severe intellectual and developmental disabilities and complex medical problems in the context of responding to parental inquiries about out-of-home placement and understanding factors affecting these types of decisions. Common medical problems and care issues for children residing outside the family home are reviewed. Variations in state and federal regulations, challenges in understanding local systems, and access to services are also discussed.
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