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![]() ![]() ![]() This population of children is typically defined as having medical fragility, substantial functional limitations, increased need for health care services and increased health care costs. However, state health officials and other stakeholders who work with CYSHCN and their families expressed a need for an in-depth set of care coordination standards that could serve as a guide for the establishment of robust, high-quality care coordination programs for CYSHCN and their families.Ĭhildren and youth with special health care needs are commonly defined as children who “have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” Increased attention has focused on a subset of CYSHCN that have been termed children with medical complexity (CMC). Key elements of care coordination are included in these national standards. These standards describe the recommended core elements of a system of care for CYSHCN. In 2014 the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN)were developed and updated in 2017, by the Association of Maternal and Child Health Programs and the National Academy for State Health Policy (NASHP), with support from the Lucile Packard Foundation for Children’s Health (LPFCH). The care coordination needs of CYSHCN deserve special attention as they may differ from those of adults due to additional service sector involvement, provider specialties required, and changes to childrens’ health care conditions as they grow and mature. That trend has shifted in recent years as states place priority on integrated care for children and youth with special health care needs (CYSHCN). Historically, policymakers and health services researchers have focused on care coordination for adult populations rather than on care coordination for children. About the National Care Coordination Standards for CYSCHNĬare coordination is a core component of federal and state efforts to improve health outcomes, reduce caregiver and patient burden, and decrease health care costs for children and adults with chronic and complex conditions. Can’t wait for another great race day!” You can help Emma to support Neurofibromatosis Northeast by visiting her Race Roster fundraising page at: /events/2023/71069/the-2023-asics-falmouth-road-race/pledge/participant/18940543. I can’t wait to run the race this year! Thank you so much for your donation, from the bottom of my heart. Emma states, “These past two years have been some of the hardest years for me mentally, and have made me realize even more that I am fortunate enough to be able to live a normal everyday life, which not everyone who lives with NF can say. ![]() In October of 2021, she was diagnosed with a seizure disorder, which her doctors believe is correlated to NF. Goumnerova at Boston Children’s Hospital performed a craniotomy and removed about 50% of Emma’s brain tumor. One of the ways she can do this is by running Falmouth to be a voice for those with NF who cannot run themselves. Emma feels very fortunate to have mild symptoms, and she makes it a goal to bring awareness to NF. NF causes tumors to grow along nerves in the body, and affects everyone differently. She was diagnosed with Neurofibromatosis (NF) when she was 18 months old. ![]() Emma McDonald is so excited to be running the ASICS Falmouth Road Race with Neurofibromatosis Northeast again this year! This charity holds a special place in Emma’s heart. ![]()
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