Rett Syndrome Communication Guidelines: A Handbook for Therapists, Educators and Families

Townend, G. S., Bartolotta, T. E., et al. (2020).

Cinncinnati, OH: Rettsyndrome.org, 1-101.

This guideline provides recommendations to help caregivers, communication professionals, and other individuals support the communication development of individuals with Rett syndrome.

Rett Expertise Centre Netherlands-GKC (The Netherlands)

<div>For individuals with Rett syndrome, a communication professional should:</div> <div> <ul> <li>train communication partners,</li> <li>provide easy-to-read instructions and handouts, and</li> <li>work with family and communication partners to design pages and select vocabulary for any augmentative and alternative communication systems and/or devices.</li> </ul> </div>

<div>For individuals with Rett syndrome, communication and management should begin early and be lifelong following typical stages of child development.</div>

<div>The following recommendations were made regarding the use of AAC in individuals with Rett syndrome:</div> <div> <ul> <li>Individuals with Rett syndrome should be referred for augmentative and alternative communication (AAC) assessment when they are initially diagnosed.</li> <li>AAC assessment can follow the Six-Step Process, the Participation Model, Feature Matching model, and/or the Model of Communicative Competence.</li> <li>AAC assessment should consider components such as modalities (e.g., unaided, aided communication), high- and low-tech AAC options, symbol systems, layouts, vocabulary complexity, access alternatives, positioning, ability to access eye-gaze technology, and the individual's overall abilities (e.g., motor skills, visual attention, motivation, memory).</li> <li>A trial period for a minimum of 8 weeks should be conducted to assess if the AAC system and/or device is appropriate for the individual and the individual's primary/key communication partners across environments.</li> <li>Device suitability for an individual should include consideration of the device's portability, durability, response time, sensitivity of responses, community of users, funding, and/or access to device repair and support.</li> </ul> </div>

<div>Individuals with Rett syndrome should be supported by a collaborative, evidence-based, multidisciplinary team consisting of, at minimum, the speech-language pathologist, family/caregivers, and the individual with Rett syndrome. Healthcare professionals such as augmentative and alternative communication (AAC) specialists, occupational therapy, physical therapy, and other specialist staff should be incorporated as significant communication partners and should maintain their knowledge of or seek training on Rett syndrome and AAC. Team members should discuss role expectations, define their responsibilities, and designate one member who is knowledgeable about Rett syndrome to act as a "key person" to monitor communication goals.</div>

<div>For individuals with Rett syndrome, initial assessment should include a detailed medical and physical history including hearing and vision status, breathing and respiratory difficulties, seizure history, and fine and gross motor skills. Subsequent assessments should include current medical and physical status, should consider skills and needs of the individual with Rett syndrome and their communication partner(s), and consider opportunities and barriers across settings. Assessments should be ongoing and dynamic and may require adaptation to standardized assessments (e.g., modifying test materials to support augmentative and alternative communication strategies or eye gaze), as appropriate. Assessments should gather information on communication-related abilities (e.g., nonverbal skills, cognitive awareness, strategies and systems, oral motor skills) as well as the broader context of the individual (e.g., social networks, knowledge and training of communication partners, opportunities and barriers to communication in the individual's environment). Assessment procedures such as interviews, questionnaires, observations, modified standardized assessment, and other informal assessments should be conducted in a variety of natural communication environments with a range of communication partners.</div>