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.

Table of Contents


Front Matter
1 Introduction and Overview of the Workshop
2 Perspectives from Individuals and Family Members
3 Disability Names and Numbers
4 Children with Serious Medical Conditions and the Behavioral Health Implications
5 Early Identification and Interventions for Developmental Disabilities Emerging in Childhood
6 Early Identification and Interventions for Youth and Adolescents with Serious Behavioral Health Conditions
7 Media and Public Perceptions and Misperceptions of Children with Disabilities
8 Breakout Groups and the Reflections of Moderators
References
Appendix A: Workshop Statement of Task
Appendix B: Workshop Agenda
Appendix C: Biosketches of Workshop Speakers and Moderators