Special Education Supports and Services for Rett Syndrome: Parent Perceptions and Satisfaction

Intellect Dev Disabil. 2020 Feb;58(1):49-64. doi: 10.1352/1934-9556-58.1.49.

Abstract

There are no published studies describing educational experiences for girls with Rett syndrome. Given the extensive educational needs associated with Rett syndrome, it is important to understand how families perceive their daughters' educational experiences to inform education service provision. The purpose of this study was to survey parents of school-aged children with Rett syndrome to describe the educational services that they receive and understand parents' perceptions of and satisfaction with the special educational and related services. The majority of parents were satisfied with their daughters' educational services. Communication was the most frequently endorsed priority skill area, and many parents expressed frustration with limited access to augmentative and alternative communication (AAC) devices and staff training in their use. These results suggest there is a need for high-quality speech therapy and an emphasis on AAC support.

Keywords: Rett syndrome; augmentative and alternative communication; parent satisfaction; related services; special education.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Child
  • Child, Preschool
  • Education of Intellectually Disabled*
  • Female
  • Humans
  • Parents*
  • Personal Satisfaction*
  • Rett Syndrome / psychology*