Girls with Rett Need Better Speech Therapy and Communication Support in Schools, Survey Says

High-quality speech therapy and more access to augmentative and alternative communication (AAC) tools are needed in schools for girls with Rett syndrome, according to a U.S. survey.

The survey’s findings, “Special Education Supports and Services for Rett Syndrome: Parent Perceptions and Satisfaction,” were published in the journal Intellectual and Developmental Disabilities.

Due to cognitive, speech, behavioral and motor problems, Rett patients have extensive educational needs. They often rely on approaches such as speech therapy, physical therapy, and occupational therapy.

High-quality educational services depend on the correct selection of assistive technology for mobility and AAC tools for non-speaking students — such as eye gaze devices and learning apps — to help communicate.

The additional health issues associated with Rett syndrome, including seizures (often resistant to first-line therapy), impaired breathing and increased susceptibility to falling, also are important factors to be considered by schools to guarantee these students’ safety.

“Rett syndrome is a rare disorder; thus, many special educators and related school support staff (e.g., school psychologists, occupational and physical therapists, etc.) are unlikely to have had direct experience with students with Rett syndrome,” the researchers wrote.

As such, it is important to understand what families of children with Rett think of existing educational support and what can be improved. However, no studies have focused on school and educational experiences of girls with Rett syndrome and their families.

Researchers in the U.S. set out to assess parental perceptions and satisfaction on school-based special education and related services provided to their daughters with Rett syndrome.

Parents of girls with Rett, ages 3 to 18 and receiving school-based special education services, were identified through multiple strategies, including phone contact, newsletters of regional and national parent advocacy groups, and social media.

Participants responded to a web-based, 80-item questionnaire with both multiple choice and open-ended response options.

The survey addressed parents’ descriptions on intervention services prior to kindergarten, current educational placements, direct and related school-based services, communication strategies and AAC devices used, and assisted technology used for positioning and mobility.

It also included parents’ perceptions on educational services, including the individualized education program (IEP) process, priority skills, safety at school, and satisfaction with educational service.

The final analysis included the answers of 29 caregivers whose daughters had an average age of 9.9 years.

Results showed that the daughters of most parents had received some type of early intervention service (97%) and also school-based occupational therapy (97%), speech/language therapy (97%), physical therapy (93%), and adapted physical education (86%). The most common educational placement for these girls was self-contained classrooms (48%).

Eye gaze was reported as the most common communication strategy used by these girls (68%), and also more than half used at least one form of aided or unaided communication (61%). Most parents reported that their child used a wheelchair for mobility (69%).

While the majority of parents were at least somewhat satisfied across all aspects of school services, they reported concerns on the time spent with general education peers, quantity and quality of speech/language and occupational therapies, and extended school year services.

Notably, communication was the most frequently reported priority skill area, and many parents expressed frustration with limited access to AAC devices, while also expressing concerns over insufficient training of staff regarding their uses.

“These results suggest there is a need for high-quality speech therapy and an emphasis on AAC support,” the researchers wrote.

The team noted that future studies could evaluate IEPs’ goals in school-age girls with Rett to better understand which areas need greater improvement.

“Doing so may lead to a more informed approach to prioritizing special education services and specific targets for school-based special education and rehabilitation goals for school-aged girls with Rett syndrome,” the researchers stated.