Distance Education for Chronically Ill Children
Wilson-Hyde, Cynthia, Distance Learning
INTRODUCTION AND BACKGROUND
For most American children of school age, the fall season traditionally brings the excitement of the start of a new school year: new classes, new teachers, and experiences with friends old and new. For some children, however, these experiences are nothing more than hopeful wishes that they may someday experience first-hand. These children are prohibited from attending traditional school due to chronic illness. "Most epidemiologic studies indicate that 10 to 15% of the childhood population of the United States has a chronic illness. Approximately 10% of chronically ill children, or 1 to 2% of the total childhood population, have severe chronic illnesses" (Perrin, Ireys, Shayne, & Moynihan, 1984, p. 11).
With a total school age population in the United States of over 73.7 million, and over 40 million children in primary and elementary grades, the number of chronically ill young children is a large population (over 800,000 children) that thus far has not attracted much attention or support from the educational or political communities. Common childhood illnesses are accepted as a normal part of child development, and most run their course in a few days without any lasting harm to the child. In contrast, a chronic illness is one that is defined as "one that lasts for a substantial period of time or that has debilitating sequelae for a long period of time" (Perrin et al., 1984, p. 11). In addition, the Council for Children and Adolescents with Chronic Conditions has added the following conditions to the definition of a chronic health condition. A chronic health condition is one that is biologically based, lasts for an extended period of time, brings about a significant change in the life of the child, and requires more than the usual amount of medical care (Council for Children and Adolescents with Chronic Conditions, 2008).
Chronic illnesses may include such familiar illnesses as asthma, diabetes, kidney disease, sickle cell anemia, Crohn's disease, and cystic fibrosis. It appears that some chronic illnesses among children are on the rise. The prevalence of disabling asthma, as reported in the National Health Interview Survey, has increased 232% since 1969. In addition to the rise in some chronic diseases in children, more children are surviving severe medical events or congenital conditions that would have been fatal even a decade ago due to the advances in medical care. In many cases, an acute incident may evolve into a chronic medical condition that allows a child to survive, but severely limits the capability to participate in normal schooling and play. The combination of more instances of childhood illness coupled with more survivors of life-threatening conditions has led to an even greater population of children with chronic conditions that limit their attendance at school. Many chronically ill students suffer no impairment to their ability to learn, but are limited only in their ability to regularly attend classes at the school site; this sub-population of children with illnesses will be the focus of this paper.
Although the number of children with chronic illness is a significant number, very little attention has been given to this national health and educational issue. In a report published in 1984 dealing with issues specific to the educational needs of chronically ill children, researchers noted that "our nation, ordinarily attentive to problems of children and families, has lagged in its response to the urgent needs of children with chronic illnesses" (Perrin, Ireys, Shayne, & Moynihan, 1984). Public education in America has not historically addressed the needs of students unable to attend school due to medical conditions, but federal policy changes since the 1960s have made some progress in defining the responsibility of school systems to the student population of chronically ill children. In a 1983 speech at the National Symposium on Public Policies Affecting Chronically 111 Children and Their Families, thenRepresentative Al Gore remarked that
The facts are clear, and the facts have been pinned down by the Vanderbilt group. …