Need for the life course model for spina bifida

Abstract

Because children with chronic conditions, such as spina bifida, have grown up into adults in increasing numbers, they and their families have increasingly questioned whether they have reached their full potential and maximized their participation in adult activities. Lack of knowledgeable adult medical providers and longitudinal data about natural history places more responsibility on individuals and their family for self-care of the impairment. This article describes the need for the life course model, which merges several concepts and principles related to children with disabilities and provides a framework for services and research to achieve the desired adult outcomes.