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.

A revised version of the report submitted to the National Commission on Childhood Disability, which was established to review the assistance given to children with disabilities under the Supplemental Security Income (SSI). The commission was releasing its findings and recommendations as the book went to print. Overviews the programs generally and the principles behind them, then details specific programs such as SSI, Medicaid, special education, block grants, Head Start, and mental health and family support programs. Includes over 40 pages of data. No index. Annotation copyright by Book News, Inc., Portland, OR

The Americans with Disabilities Act (ADA) and other national policies are designed to ensure the greatest possible inclusion of people with disabilities in all aspects of American life. But as a matter of national policy we still place the lion's share of responsibility for raising children with disabilities on their families. While this strategy largely works, sociologist Dennis Hogan maintains, the reality is that family financial security, the parents' relationship, and the needs of other children in the home all can be stretched to the limit. In Family Consequences of Children's Disabilities Hogan delves inside the experiences of these families and examines the financial and emotional costs of raising a child with a disability. The book examines the challenges families of children with disabilities encounter and how these challenges impact family life. The first comprehensive account of the families of children with disabilities, Family Consequences of Children's Disabilities employs data culled from seven national surveys and interviews with twenty-four mothers of children with disabilities, asking them questions about their family life, social supports, and how other children in the home were faring. Not surprisingly, Hogan finds that couples who are together when their child is born have a higher likelihood of divorcing than other parents do. The potential for financial insecurity contributes to this anxiety, especially as many parents must strike a careful balance between employment and caregiving. Mothers are less likely to have paid employment, and the financial burden on single parents can be devastating. One-third of children with disabilities live in single-parent households, and nearly 30 percent of families raising a child with a disability live in poverty. Because of the high levels of stress these families incur, support networks are crucial. Grandparents are often a source of support. Siblings can also assist with personal care and, consequently, tend to develop more helpful attitudes, be more inclusive of others, and be more tolerant. But these siblings are at risk for their own health problems: they are three times more likely to experience poor health than children in homes where there is no child with a disability. Yet this book also shows that raising a child with a disability includes unexpected rewards—the families tend to be closer, and they engage in more shared activities such as games, television, and meals. Family Consequences of Children's Disabilities offers access to a world many never see or prefer to ignore. The book provides vital information on effective treatment, rehabilitation, and enablement to medical professionals, educators, social workers, and lawmakers. This compelling book demonstrates that every mirror has two faces: raising a child with a disability can be difficult, but it can also offer expanded understanding. A Volume in the American Sociological Association's Rose Series in Sociology

This book addresses the development of our understanding of the abuse and neglect in the lives of children with disabilities. Disabilities in childhood uniquely dispose children for their abuse and neglect. Additionally, abuse and neglect dispose children for disabilities. The care and education of children with disabilities requires unique knowledge and skills and so does the consideration of their abuse and neglect. This book is based on data generated from an analysis of cases involving the abuse and neglect of children with disabilities as well as on an analysis of the data based literature in this area. Readers are provided with analysis and reflection exercises throughout the text so that they may analyze and reflect on their own awareness of the abuse and neglect of children with disabilities. Each chapter also contains a set of implications for research and practice. The final chapter focuses directly on prevention. Caregivers and professionals across disciplines will develop a new understanding of their roles in universal, secondary, and tertiary level prevention that is targeted, focused, data-based, and designed to prevent the abuse and neglect of children with disabilities in the first place.

Our knowledge of the cognitive and social-emotional functioning of developmentally disabled infants and preschoolers derives, in large part, from our assessment of such children. This book has been developed to familiarize readers with the characteristics of developmentally disabled children, and to introduce to readers aspects of measurement that are of relevance to the assessment of atypical infants and preschoolers. The book has been developed with clinicians and prospective clinicians in mind. These are individuals who are committed to the care and education of developmentally disabled infants and preschoolers and the families of those children. The book has thus been written to provide support for the use of assessment data in planning early interven tion programs. Of special note in the development of this edited book is that it is divided into four major parts with interrelated chapters in each part. The authors of chapters in Parts II and III had access to the chapters in Part I before writing their chapters. The summary chap ters found in Part IV were similarly written by authors having access to all chapters in Parts I-III. This approach to the development of an edited book was chosen as a way of ensuring an integration of major concepts throughout the book. This process is also a reflection of our belief that assessment is an interdisciplinary process, involving the syn thesis of a number of diverse interests.

The International Day of Persons with Disabilities (IDPD) serves to globally promote an understanding of disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. The theme of the most recent United Nations Day was “transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world”. It is in this spirit that Frontiers in Public Health is launching a new article collection inspired by this UN day, with a specific focus on children with disabilities and how innovative public health solutions to support them can contribute to making the world a more equitable and prosperous world for all.

Focusing on contemporary childhood disability issues, and relevant to the lived experiences of disabled children and young people and their families, this book addresses themes such as transition, identity, education, inclusion, and service provision. It also includes insightful contributions on participatory research and practice with disabled children and young people, including an emphasis on capability, voice, and communicative spaces for those with life limiting and more severe levels of impairment. The contributions to this book are grounded in a commitment to the rights of disabled children and young people, as explicitly recognised under the United Nations Conventions on the Rights of the Child (1989) and Rights of Persons with Disabilities (2006). However, the authors also draw our attention to the detrimental impact of economic austerity and conflict on the extent to which these rights are being realised, encouraging further consideration of issues relating to social justice, inter-dependence, and participation. Addressing the diversity of disabled children’s lives across service domains and international contexts, this book provides an evidence base to support the realisation of the rights of disabled children and young people. This book was originally published as a special issue of Child Care in Practice.

Supporting Families of Children with Developmental Disabilities: Evidence-based and Emerging Practices provides a comprehensive review of the empirical evidence on interventions for families of individuals - ranging from post-preschool age to adulthood - with developmental disabilities. The book presents both narrative and meta-analytic syntheses of a large body of research to evaluate which interventions meet contemporary standards as evidence based practices. The body of studies reviewed in the book has not previously been gathered into one volume, nor evaluated as a whole for the quality and extent of the evidence. The research is presented in the context of contemporary social policy and practices aimed at maximizing the development of children with disabilities while increasing the quality of life of their families. The criteria and procedures followed for identifying, reviewing, evaluating, and categorizing the studies are articulated in line with other major professional standards. Individual chapters focus on several different schools of practice, including: group psycho-educational interventions, behavioral parent training, multiple component interventions, supportive interventions for families of children with autism, home- and school-based practices, self-help groups, and advocacy programs. Supporting Families of Children with Developmental Disabilities is an important tool for moving the disability field forward for future research, practice, and social policy.