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Introduction and Overview of the Workshop
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 Forum on Promoting Children’s Cognitive, Affective, and Behavioral Health held a workshop in Washington, D.C., December 9-10, 2015, titled “Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs.” 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. Presentations and discussions among the 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 forum
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 summary of the workshop should not be seen as the conclusions of the workshop participants as a whole. Rather, it recounts the points made by workshop presenters and participants as a way of exploring the many issues surrounding children with disabilities and complex health and educational needs and their families and caregivers. Many individuals and groups are involved with these issues, including patient groups, health care professionals, government officials, policy makers, and community members. By working together, these individuals and groups can enhance the health and well-being not only of children with disabilities and complex conditions, but also of all children.
ORGANIZATION AND MAJOR THEMES OF THE WORKSHOP
The workshop consisted of a keynote address and four panel presentations, followed by a final session in which the moderators of the preceding sessions and reporters from three breakout sessions revisited some of the major themes that arose during the workshop.
The workshop began with a panel of three individuals and family members affected by disabilities and complex health and educational needs, who described their greatest challenges and how they have worked to overcome those challenges (Chapter 2). The need for a variety of coordinated services was mentioned by several of the panel members, including services that need to be available in educational settings but often are not. Another common theme was the challenges posed by transitions in care, whether because a family moves, a child becomes an adolescent or an adolescent becomes an adult, or a complex condition changes over time.
Chapter 3 summarizes the keynote address by Maureen Durkin, a codirector of the Center for Pediatric Traumatic Stress at the Children’s Hospital of Philadelphia and A.I. duPont Hospital for Children in Delaware. She noted that the prevalence of childhood disabilities has risen dramatically in recent decades in the United States, in part because more children are surviving childhood illnesses and disabilities that they would not have survived in the past. Also, the prevalence of mental disabilities has been rising faster than that of physical disabilities, and disparities in
prevention and treatment have caused the prevalence of disabilities to vary among population groups.
Chapter 4 considers the implications of serious medical conditions for behavioral health. For example, the psychological and physiological responses of children and their families to pain, injury, medical procedures, and invasive or frightening treatment experiences can manifest as traumatic stress that can seriously impair a child’s or family’s functioning. Both community supports and family resilience can reduce the behavioral health consequences of serious medical conditions, but achieving these objectives requires coordination among systems that do not always work well together.
Chapter 5 presents the observations of a panel that looked at developmental disabilities arising in childhood, with a particular focus on autism. Every child and family is different, observed the speakers on this panel, which means that interventions need to be personalized or tailored for individuals and sites. Moreover, policies that have increased access to services have not necessarily increased the quality of those services, panel members said.
Chapter 6 looks at older youth who have serious behavioral health conditions, including depression, bipolar disorder, and schizophrenia. Early intervention has the potential to reduce disability for these conditions, speakers on this panel observed, reducing hospitalizations and increasing the rates of participation in work and school. In addition, coordinated approaches that span mental health issues, substance abuse, and educational deficits can address the combination of issues that these young people and their families face.
Chapter 7 considers a topic that the forum had not explored in a workshop before—the role of the media in shaping public perceptions and misperceptions of children with disabilities. The media can help individuals, families, and communities communicate their needs, the speakers on this panel said. Stories on children with disabilities can educate, illuminate, and inform. The media also can help convey the message that disabilities are not inherent in an individual but arise through the interaction of that individual with his or her physical and social environment.
Finally, Chapter 8 features the reflections of the panel moderators on the workshop. Care coordination, community engagement, early interventions, and prevention were all highlighted by several speakers, as were the benefits that would be expected to follow from a White House conference on children and the establishment of a federal children’s office in the near-term future. Box 8-1, in this chapter, provides a summary of suggestions for future actions made by speakers throughout the workshop.
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