Case Studies of Chronically Ill Children: Implications for Education Professionals

Case Studies Of Chronically Ill Children: Implications For Education Professionals

The purpose of this chapter is to provide a brief historical overview of how children with chronic illnesses and their families have been served by educators, to track the development and application of legislation that pertains to chronically ill children, and to apply these ideas to four case studies of children with chronic illness. The treatment of children with chronic illnesses often mirrors that of children with other severe disabilities such as intellectual disabilities or autism. Early efforts at supporting these children generally took place in institutional settings where safety and medical treatment were the primary concerns. Additionally, families began to express interest in having their children educated in more inclusive settings. School districts, however, resisted these efforts to include students with disabilities and refused to accept them into public schools.

As parents began to advocate and as legislation such as IDEA and later NCLB were enacted, children with chronic illness have been included more in the regular education setting. This chapter will describe the push and pull between those who believe that full inclusion is the best setting for students with chronic illness and those who believe that more restrictive settings are preferable. As the four case studies included here show, children with chronic illness and their families need to learn to adapt to serious medical conditions while attempting to live as normal a life as possible. Through no small measure of drive and resiliency, the children and their families show that it is possible to manage chronic illness, maintain a sense of humor, and pursue educational, social, and career goals. Readers of these case studies will be asked to apply information from the opening remarks in the chapter and their own experience through a series of questions.

Medical advances have increased the number of children who have survived and are now living with chronic medical conditions (Irwin & Elam, 2011; Singer 2012). Diseases and conditions that as recently as a decade ago were considered fatal or completely debilitating are now increasingly treated as chronic conditions. Among these are several types of cancer, HIV/AIDS, respiratory illnesses, and severe epilepsy.