Ensuring Quality And Accessible Care For Children With Disabilities And Complex Health And Educational Needs

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.

"We hope that the lives of all children will be filled with possibility, with open horizons and rainbows into the future. Children with serious illnesses, their families, and those who care for them, confront the realization that "not everything is possible," that despite dramatic scientific and medical advances, the lifespan of some children will be shortened. This threat of premature loss heightens the sense of time for children and families alike, and challenges clinicians to create new pathways of hope for them"--

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.

Co-enrollment programming in deaf education refers to classrooms in which a critical mass of deaf and hard-of-hearing (DHH) students is included in a classroom containing mainly hearing students and which is taught by both a mainstream teacher and a teacher of the deaf. It thus offers full access to both DHH and hearing students in the classroom through "co-teaching" and avoids academic segregation of DHH students, as well as their integration into classes with hearing students without appropriate support services or modification of instructional methods and materials. Co-enrollment thus seeks to give DHH learners the best of both (mainstream and separate) educational worlds. Described as a "bright light on the educational horizon," co-enrollment programming provides unique educational opportunities and educational access for DHH learners comparable to that of their hearing peers. Co-enrollment programming shows great promise. However, research concerning co-enrollment programming for DHH learners is still in its infancy. This volume sheds light on this potentially groundbreaking method of education, providing descriptions of 14 co-enrollment programs from around the world, explaining their origins, functioning, and available outcomes. Set in the larger context of what we know and what we don't know about educating DHH learners, the volume offers readers a vision of a brighter future in deaf education for DHH children, their parents, and their communities.

Publisher's Note: Products purchased from 3rd Party sellers are not guaranteed by the Publisher for quality, authenticity, or access to any online entitlements included with the product. This substantially updated edition is clear and concise, packed with precisely written summaries of developmental and behavioral issues for all pediatric clinicians and other healthcare professionals. In a succinct, heavily bulleted style, the authors offer practical guidance on addressing important questions many parents ask about their children’s development and behavior. Ideal for the busy clinician to quickly and efficiently access helpful clinical information on the fly.

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.

"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.

America's Children is a comprehensive, easy-to-read analysis of the relationship between health insurance and access to care. The book addresses three broad questions: How is children's health care currently financed? Does insurance equal access to care? How should the nation address the health needs of this vulnerable population? America's Children explores the changing role of Medicaid under managed care; state-initiated and private sector children's insurance programs; specific effects of insurance status on the care children receive; and the impact of chronic medical conditions and special health care needs. It also examines the status of "safety net" health providers, including community health centers, children's hospitals, school-based health centers, and others and reviews the changing patterns of coverage and tax policy options to increase coverage of private-sector, employer-based health insurance. In response to growing public concerns about uninsured children, last year Congress voted to provide $24 billion over five years for new state insurance initiatives. This volume will serve as a primer for concerned federal policymakers and regulators, state agency officials, health plan decisionmakers, health care providers, children's health advocates, and researchers.