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Children with chronic conditions, developmental disorders, and birth defects represent a sizeable minority of American children—as many as one in five. Often their families have financial or other issues limiting their access to appropriate care, thus limiting their adult prospects as well. Compounding the problem, many valuable resources concerning this population are difficult to access although they may be critical to the researchers, practitioners, and policymakers creating standards for quality care and services. In response, the Handbook of Children with Special Health Care Needs assembles research, applied, and policy perspectives reflecting the range of children’s problems requiring special services. Widely studied conditions (e.g., communication disorders, substance abuse) and those receiving lesser attention (e.g., tuberculosis) are covered, as are emerging ideas such as the “medical home” concept of continuity of care. Its interdisciplinary outlook makes the Handbook of Children with Special Health Care Needs a vital, forward-looking text for developmental psychologists, pediatricians, early childhood and special education researchers and practitioners, disability researchers, policymakers, and advocates, and providers for children with special health care needs.
Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children's usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children's social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data. Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.
Children with disabilities and complex medical and educational needs present a special challenge for policy makers and practitioners. These children exhibit tremendous heterogeneity in their conditions and needs, requiring a varied array of services to meet those needs. Uneven public and professional awareness of their conditions and a research base marked by significant gaps have led to programs, practices, and policies that are inconsistent in quality and coverage. Parents often have to navigate and coordinate, largely on their own, a variety of social, medical, and educational support services, adding to the already daunting financial, logistical, and emotional challenges of raising children with special needs. The unmet needs of children with disabilities and complex medical and educational needs can cause great suffering for these children and for those who love and care for them. To examine how systems can be configured to meet the needs of children and families as they struggle with disabilities and complex health and educational needs, the National Academies of Sciences, Engineering, and Medicine held a workshop in December 2015. The goal of the workshop was to highlight the main barriers and promising solutions for improving care and outcome of children with complex medical and educational needs. Workshop participants examined prevention, care, service coordination, and other topics relevant to children with disabilities and complex health and educational needs, along with their families and caregivers. More broadly, the workshop seeks actionable understanding on key research questions for enhancing the evidence base; promoting and sustaining the quality, accessibility, and use of relevant programs and services; and informing relevant policy development and implementation. By engaging in dialogue to connect the prevention, treatment, and implementation sciences with settings where children are seen and cared for, the forum seeks to improve the lives of children by improving the systems that affect those children and their families. This publications summarizes the presentations and discussions from the workshop.
"The complexity of government programs sometimes makes it difficult for children with disabilities to get the benefits they need. This can impede their health and development. This book suggests ways to improve the system. Its main focus on the three largest programs: special education, Supplemental Security Income, and Medicaid"--Provided by publisher.