Rare neurological diseases in children: current paradigm of communicational interventions and inclusion

Abstract

The goal of the presented work is to identify the optimum strategy for the enhancement of communication in patients with rare neurological disorders based on different models. With rapidly developing alternative communication technologies it becomes essential to identify an access method for a child and chose the alternative system of communication. Communication difficulties are common in children with rare neurological disorders. These disorders are manifested with motor, cognitive and sensory deficit. Speech and language therapy applied in these categories of patients is presented in various research publications. When forming a message, human communicators typically use a combination of modes: cognitive, psychological, or psycholinguistic sense to facilitate the way children construct internal representations that can be encoded and presented in different forms. Comprehensive assessment and recommendation of appropriate augmentative and alternative communication (AAC) systems are critical factors in the success of interventions for individuals with rare neurological disorders who have complex communication needs. The assessment of communication difficulties associated with rare diseases is an essential factor for the development of AAC technologies for these pediatric patients. The methods applied in the presented research are: analysis of different studies and, systematization and generalization of the research evidence. Enhancement of communication in patients with rare neurological disorders should be based on the integration of cognitive, psychological, or psycholinguistic models. For children with rare neurological disorders that eventually lead to speech, cognitive and psychological disturbances, AAC methods are the strategies of choice to facilitate communication. These tools with different access methods are used to support inclusion of children with rare neurological conditions into education system.