Environmental adjustments for the person with Rett syndrome. Adapting the house and the family structure

Abstract

In the last 50 years, many conceptual, physical, and environmental changes have been made in the lives of individuals with intellectual disability (ID), especially improvements in the quality of life and self determination area. Because the different environments in which people live, learn, work, and play influence many aspects of their lives, it is imperative to include such elements as self determination, choice and autonomy when changes in the environment are planned. The X-linked Rett syndrome (RS), which affects 1 in 10,000 girls, presents a special challenge in this area. Because individuals with RS have the capacity to show apparent preferences and choice making in their lives, it is called for that the person with RS and her family should participate in any change in their physical environment. This article presents a non traditional concept, stating that environmental changes could be suggested to the family with RS with the intent of not merely changing the physical environment but rather the familial structure by enhancing a balance state among all members of the family. The present article reviews the current state in environmental adaptation for individuals with ID as well as individuals diagnosed with RS. The article reviews the clinical characteristics of RS that should be included with physical environmental changes and concludes with a case study describing the decision making process.