Cerebral/Cortical Vision Impairment (CVI), the leading cause of blindness among children in the United States, affects approximately 180,000 children nationwide. Educators, early intervention specialists, and pediatricians have not been exposed to the needs of those with CVI and are not learning strategies to support their success, despite its incidence. To address this lack of awareness and support, Perkins School for the Blind established the CVI Center in 2021, focusing on assessment, collaboration, advocacy, and training. Previous RDPFS funding helped to expand teacher training programs to ensure that students with CVI have access to appropriate educational interventions. This recent grant builds on this progress to help launch the Perkins CVI Protocol, a comprehensive, inclusive, and holistic assessment. CVI is caused by damage to the visual pathways and processing to the brain. With early assessment and timely intervention, some children with the condition can strengthen their neural pathways and be taught how to use compensatory strategies to improve their functional vision to understand the world around them. Since it is strongly connected to premature birth, and as more premature infants are surviving, the incidence of CVI is increasing. It is often undiagnosed or misdiagnosed, with many individuals labeled untreatable and unteachable. No comprehensive assessment for CVI currently exists. The Protocol is a free tool for parents, caregivers, and educators to work collaboratively to assess children who are suspected of having CVI. It is available on an interactive digital platform and as an electronic, non-digital workbook. The funding supports refining the CVI digital platform, following feedback from its preliminary release in March 2024; publishing electronic and print versions of the CVI Protocol workbook; implementing a training course; and the national launch and distribution of the Protocol. Outreach will be conducted to educators and medical providers via interactive webinars, in-person presentations and trainings, published articles, mailings, and exhibit booths at eye and vision-impairment-related medical conferences.
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