Special Education Supports and Services for Rett Syndrome: Parent Perceptions and Satisfaction.
Parents of girls with Rett syndrome like their schools but still lack AAC devices and trained staff.
01Research in Context
What this study did
Larriba-Quest et al. (2020) sent a survey to parents of girls with Rett syndrome.
They asked how happy parents are with school services and what is missing.
What they found
Most parents said services are okay, but not great.
Biggest gaps: getting AAC devices and staff who know how to use them.
How this fits with other research
Rattaz et al. (2014) asked French parents of autistic students the same questions.
Both groups like the kindness of staff, but both flag poor communication and no diagnosis-specific tools.
Schaaf et al. (2015) surveyed teachers of kids with other rare genetic syndromes.
Those teachers also said they had little syndrome training, matching the Rett parents’ complaint.
Mandak et al. (2018) later showed parents of minimally verbal autistic kids feel the same AAC pinch, proving the gap spans diagnoses.
Why it matters
If you write IEPs for students with complex needs, check the AAC section first.
Parents in every survey say it’s the top unmet need.
Schedule a quick device trial and add staff training goals—two moves that raise satisfaction fast.
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02At a glance
03Original 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.
Intellectual and developmental disabilities, 2020 · doi:10.1352/1934-9556-58.1.49