Development of a national monitoring protocol (developmental guide) for children with visual impairment 0-36 months

Objective: The aim of this project is to provide a national developmental monitoring protocol for infants and young children (0–36 months) with severe visual impairment (VI) that is underpinned by a scientific developmental framework. The profile will be used to inform and assist parents to help their baby progress and to recognise and, where possible, overcome areas of vulnerability in conjunction with their specialist teacher for the visually impaired and other professionals. Design: The work of our group and others has shown that infants with severe visual impairment are a particularly vulnerable group within the population of children with disability. They require a developmental profile that is specific to their developmental patterns and needs. The protocol is designed to provide practical guidance for parents and their keyworker on activities to promote the development of all skills. The development of the protocol draws on our specialist team's clinical experience, recent research and other developmental scales for young children with visual impairment (e.g. Oregon) and is informed by focus groups and piloting with parents and qualified teachers of children with visual impairment. Results: We describe the justification of the developmental framework, the outcome of focus groups with parents and specialist teachers and plans for implementation including the strategy for a local and regional health and education service framework for early intervention. Conclusions: This paper describes the first stage of development of this national monitoring protocol and guidance for parents of young children with visual impairment which will have important implications for services both nationally and internationally