Pediatrics. 2022 Jun 1;149(Suppl 7). doi: 10.1542/peds.2021-056150C.
Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.
患有特殊健康需求的儿童和青少年（CYSHCN）及其家庭在获得综合、以家庭为中心、以证据为基础、对文化有响应的医疗保健和其他服务方面仍然面临挑战。超过 1200 万，即近 86%的 1-17 岁 CYSHCN 无法获得运作良好的服务系统。此外，CYSHCN 及其家庭所经历的不平等现象，特别是在资源匮乏的社区，突显了必须解决健康决定因素和我国提供医疗保健方式的关键需求。为了推进该系统，并优先考虑 CYSHCN 的福祉和最佳健康，卫生资源和服务管理局的母婴健康局在多方利益相关者的参与下，为该领域制定了一套核心原则和可操作的策略。本文介绍了变革蓝图中的原则和策略：为 CYSHCN 及其家庭服务系统的指导原则（变革蓝图），该蓝图承认了 CYSHCN 的全面需求、不断变化的医疗保健系统以及许多 CYSHCN 所经历的差异。四个关键领域推动了变革蓝图：健康公平、家庭和儿童福祉和生活质量、服务获取以及服务融资。尽管这些关键领域是分开讨论的，但它们本质上是相互关联的，旨在在社区、州和联邦各级推动该领域向前发展。解决这些关键领域需要采取协调一致、全面和综合的方法，帮助我们实现 CYSHCN 从儿童期到成年期都能过上充实生活并在一个支持他们的家庭以及他们的社会、健康和情感需求的系统中茁壮成长的目标，确保他们的尊严、自主权、独立性和积极参与他们的社区。
