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.
Table of Contents
|1 Introduction and Overview of the Workshop||1-4|
|2 Perspectives from Individuals and Family Members||5-16|
|3 Disability Names and Numbers||17-22|
|4 Children with Serious Medical Conditions and the Behavioral Health Implications||23-36|
|5 Early Identification and Interventions for Developmental Disabilities Emerging in Childhood||37-48|
|6 Early Identification and Interventions for Youth and Adolescents with Serious Behavioral Health Conditions||49-60|
|7 Media and Public Perceptions and Misperceptions of Children with Disabilities||61-70|
|8 Breakout Groups and the Reflections of Moderators||71-78|
|Appendix A: Workshop Statement of Task||85-86|
|Appendix B: Workshop Agenda||87-90|
|Appendix C: Biosketches of Workshop Speakers and Moderators||91-100|
The National Academies Press and the Transportation Research Board have partnered with Copyright Clearance Center to offer a variety of options for reusing our content. You may request permission to:
For most Academic and Educational uses no royalties will be charged although you are required to obtain a license and comply with the license terms and conditions.
For information on how to request permission to translate our work and for any other rights related query please click here.
For questions about using the Copyright.com service, please contact:
Copyright Clearance Center
22 Rosewood Drive
Danvers, MA 01923
Tel (toll free): 855/239-3415 (select option 1)
Loading stats for Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs: Proceedings of a Workshop...