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Cerebral visual impairment related vision problems in primary school children: a cross sectional survey

We are incredibly excited to report that The CVI Project Research paper on cerebral visual impairment related vision problems in primary school children is now published. We are indebted to their work.
We hope this research will lead to positive outcomes for children and young people with CVIs, not only with regards to swifter identification and diagnosis, but to a wider understanding of the needs of those children already diagnosed, as awareness and understanding of the potential presentation and impact CVIs, increases throughout clinicians and educational professionals.
At present, many young people are struggling to access education (or indeed their families have felt that they have no choice but to remove them from education in school to 'education otherwise' www.educationotherwise.org, not only with regard to accessible learning materials but the wider, equally important additional curriculum essential for the independence and well being of all children with a vision impairment. This encompasses the additional skills necessary for a happy future life, so that they are able to engage, learn, develop skills for independence and social engagement, and for all to thrive, wherever they are on the CVI spectrum.

The vast majority of professionals involved in assessment of children are as yet are unaware of CVIs existence let alone its potential impact. Thus many children are struggling in school. No one involved in their education and care may be aware that brain based vision related problems may be the cause of, or contribute to their difficulties be it learning or behaviours, low self esteem and anxiety or for many all of these things. Our experience and knowledge of many young people with previously undiagnosed (and even many with diagnosed CVIs) tells us that they are at great risk of having their cognitive abilities underestimated. Even where they may have cognitive challenges, these may be overestimated as assessment materials are generally unmodified to meet the child's needs. This is then further compounded by inaccessible education materials and lack of wider understanding of the impact of each individuals particular CVIs.

The CVI Project Team's work will potentially transform the lives of so many young people and their families.
We and the families we support are grateful for the incredible work of Cathy Williams and The CVI Project Team and their following kind words.

''The CVI Society parents and professionals have been a tremendous help and source of inspiration for the CVI project and we are now able to share the results which have just been published in the journal Developmental Medicine and Child Neurology. In the paper, we suggest that detailed vision checking, similar to what we carried out in the study, for all children who need extra support at school would be helpful and could improve outcomes for children in future. We are now carrying out further research to see how this might be achieved. So a big thank you to everyone in the CVI Society who has helped and advised us!''

You can read the paper here:

https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.14819

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