As the largest UK charity supporting people affected by nystagmus, the Nystagmus Network is well placed to drive change in the field of nystagmus and education support.
Conversations with Nystagmus Network members have led us to identify a need for more information for parents and carers supporting children and young people with nystagmus in educational settings. Our centralised resource hub will have a dramatic impact on the community we support by providing easy access to practical information.
The hub signposts the support, information and services available for the child or the young person and their parents or carers, from early years to further and higher education. It incorporates information and guidance on best practice support, resources available and an outline of the statutory requirements.
Due to the complexity of SEND Law, Frances Lilley, our volunteer education advocate provides a personal one to one service to Nystagmus Network members to discuss a child’s individual education support needs. She can provide legally-based advice to secure meaningful support across all stages of education.