OVERVIEW

The focus of this chapter must be the family. Any cred­ible work in this field is based on the premise that the family's adjustment underlies that of the child/adoles- cent. This is consistent with the developmental under­standing of the “typical” child, and the added issue of disability only magnifies this relationship between child and parent or caregiver.

The scope of this chapter will encompass those children with disabilities and their families within a medical rehabilitation context. This work will cover those with congenital and acquired disabilities, with some relative focus on those with acquired disability due to injury or illness. Many children now survive what in times past would have been lethal assaults by illness or injury and now mature into adulthood. So now the issue is quality of life for the 1 to 2 million children who have a severe chronic physical condition in the United States (2).

Quality of life means several things in this con­text. Good quality of life depends on the family's ability to maintain its own integrity by developing an idiosyncratic “normal” from which to preserve its primary job of guiding the child with a disability (or any child) to independence. In real terms, this means performance of tasks unique to children with disabili­ties. These tasks include, but are not limited to, mas­tery of the medical system, needed accommodations from the educational setting, navigation of the “rough waters” of social acceptance, and integrating the real­ity of the disability into the family structure. Specific to this is empowering the family by providing the nec­essary educational materials as well as mentoring to facilitate adept handling of the two behemoths of the medical and educational/vocational bureaucracies. It is essential that the family remain the center of all training and education of the child with a disabil­ity. The family is the expert on its own functioning, and without deliberately tapping that expertise, inap­propriate goals and agendas are developed. Without doing this, in trying to “help,” the family is left feeling isolated as they travel their journey of childhood dis­ability and injury.