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首页> 外文期刊>American journal of public health >Assessing and Ensuring a Comprehensive System of Services for Children With Special Health Care Needs: A Public Health Approach
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Assessing and Ensuring a Comprehensive System of Services for Children With Special Health Care Needs: A Public Health Approach

机译：评估和确保有特殊保健需求的儿童的综合服务系统：一种公共卫生方法

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The US Department of Health and Human Services called for comprehensive systems of services for children with special health care needs in its Healthy People 2000 and 2010 health care objectives for the nation. We report on the proportion of children with special health care needs receiving care in high-quality systems of services measured by attainment of 6 essential system elements, or quality indicators, generated from a survey of 40 723 families of children with special health care needs in 2005 to 2006. Only 17.7% of children with special health care needs received services in a high-quality service system that met all 6 quality indicators in 2005–2006. Therefore, much more work lies ahead to meet the national Healthy People objective for these children. Programs addressing the unique needs of children, particularly those at increased risk for or with special health care needs, have long been a component of the public health system. The Federal Children's Bureau, established in 1912, was the first government program to serve children with severe chronic conditions—then referred to as crippled children. That program was eventually transferred to the Maternal and Child Health Bureau (MCHB) of the US Public Health Service in 1969. Today, Children with Special Health Care Needs (CSHCN) programs, supported through Title V of the Social Security Act, exist in every state, territory, and the District of Columbia. 1 Building on a foundation of initiatives by the US Surgeon General, 2 , 3 Congress used the 1989 Omnibus Budget Reconciliation Act to direct state and federal Title V public health agencies to provide and promote family-centered, community-based, coordinated care … and facilitate the development of community-based systems of services … for children with special health care needs and their families. 4 Subsequently, the federal government called for comprehensive systems of services for children with special health care needs in its Healthy People 2000 and Healthy People 2010 health care objectives for the nation. 5 , 6 At the federal level, the definition of children with special health care needs was significantly broadened beyond “crippled children” in 1998 to include those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required for children generally. 7 (p138) During 2005 to 2006, 13.9% (10.2 million) of US children younger than 18 years were estimated to have a special health care need. 8 This represents an increase in prevalence from the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN), which produced an estimate of 12.8%. Children with special health care needs are a heterogeneous population with a wide range of diagnoses and functional limitations. Their common denominator is an elevated need for services. Those service needs often must be met in multiple settings by a variety of professionals and service agencies. 8 Because children with special health care needs often require complex and long-term health services; consume a disproportionate share of health care dollars spent on children 9 ; are vulnerable to access, cost, quality, and coverage weaknesses in the health care system 10 – 12 ; experience disparities in accessing care 13 , 14 ; and constitute a sizeable minority of children, 8 it is important that public health agencies assess, monitor, and develop policies to protect and promote the well-being of this population of children and youths. Increasingly, Title V CSHCN programs have moved away from providing direct services to children with special health care needs toward a public health infrastructure-building approach to ensure a seamless system of services and access to care for children with special health care needs and their families. To provide direction and accountability, MCHB worked with state Title V agencies, families, and other stakeholders to develop and promulgate 6 key system building blocks, referred to as core outcomes or quality indicators, to describe what families should be able to expect from the service system: (1) family partnership in decision-making and satisfaction with care, (2) receipt of care through a medical home, (3) adequate health insurance, (4) early and continuous screening and surveillance, (5) services that are organized for ease of use, and (6) effective transition planning for adult health care. Together, these quality indicators represent the essential elements needed for high-quality systems of services. 15 , 16 Defining a high-quality system as one that meets all 6 quality indicators sets a high bar in that meeting all criteria requires that children receive care that is adequately financed, organized for easy use, an
机译：美国卫生与公共服务部在其《 2000年全美健康人群》和《 2010年全美健康目标》中呼吁为有特殊医疗需求的儿童提供全面的服务系统。我们报告了对高质量服务体系中有特殊保健需求的儿童的照顾比例，这些指标是通过对6 723个特殊保健需求儿童家庭的调查得出的6个基本系统要素或质量指标来衡量的。 2005年至2006年。只有17.7％的需要特殊医疗保健的儿童在高质量的服务系统中获得了服务，该系统满足了2005-2006年的所有六个质量指标。因此，要实现针对这些儿童的国家“健康人”目标，还有更多工作要做。长期以来，解决儿童独特需求的计划，特别是那些面临更大风险或有特殊医疗需求的儿童的需求，一直是公共卫生系统的组成部分。成立于1912年的联邦儿童局是第一个为患有严重慢性疾病的儿童提供服务的政府计划，当时这些儿童被称为残废儿童。该计划最终于1969年移交给美国公共卫生服务局的母婴健康局（MCHB）。如今，在《社会保障法》第V篇的支持下，有特殊医疗需要的儿童（CSHCN）计划已经存在。州，领地和哥伦比亚特区。 1 在美国外科医生的倡议基础上， 2，3 国会使用了1989年《综合预算和解法案》来指导州和联邦第五章的公共卫生机构，为有特殊医疗需求的儿童及其家庭提供和促进以家庭为中心，社区为基础的协调性医疗……并促进以社区为基础的服务系统的发展。 4 随后，联邦政府在其《全民健康2000》和《全民健康2010》的全国医疗目标中呼吁为有特殊医疗需求的儿童提供综合服务系统。 5，6 联邦的在一级上，具有特殊医疗保健需求的儿童的定义已大大扩展，超出了1998年的“残废儿童”，以包括那些患有慢性身体，发育，行为或情感状况的儿童或处于这种状况的儿童，并且还需要健康和 7 （p138）在2005年至2006年期间，美国18岁以下儿童中有13.9％（1,020万） 8 这比2001年全国有特殊保健需求的儿童调查（NS-CSHCN）的患病率有所增加，该估计数估计为12.8％。有特殊保健需求的儿童是异类人群，具有广泛的诊断和功能限制。它们的共同点是对服务的需求增加。这些服务需求通常必须由各种专业人员和服务机构在多种环境中满足。 8 因为有特殊医疗需求的儿童经常需要复杂而长期的医疗服务;花费在用于儿童 9 的医疗保健费用中的比例不成比例;在医疗保健系统中容易受到访问，成本，质量和覆盖范围弱点的影响 10 – 12 ;在获得护理方面存在差异 13，14 ; 8 重要的是，公共卫生机构必须评估，监测和制定政策，以保护和促进这一儿童和年轻人的福祉。第五章CSHCN计划越来越多地从为有特殊医疗需求的儿童提供直接服务，转向建立公共卫生基础设施的方法，以确保为有特殊医疗需求的儿童及其家庭提供无缝的服务系统和医疗服务。为了提供指导和问责制，MCHB与第五标题州的机构，家庭和其他利益相关者合作，制定并颁布了6个关键系统构建模块，称为核心成果或质量指标，以描述家庭应该从服务中期望什么系统：（1）决策和对护理的满意度中的家庭伙伴关系;（2）通过医疗之家获得护理;（3）足够的健康保险;（4）早期和持续的筛查和监视;（5）组织起来易于使用，以及（6）有效的成人保健过渡计划。这些质量指标共同代表了高质量服务系统所需的基本要素。 15，16 将高质量系统定义为满足所有6个质量指标的系统，为在满足所有条件方面树立了高标准。标准要求儿童接受足够资助，组织得易于使用，

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