The Nystagmus Network’s volunteer Education Advocate, Frances Lilley has been supporting families with education for many years on behalf of the charity. She became a trustee in May 2016. She has a teenage daughter with congenital idiopathic nystagmus.
Trained by IPSEA, Frances gives parents and carers one to one legally-based advice and support on how to negotiate the education system in England, so that children and young people with nystagmus can access support across all stages of education. Her caseload now numbers over 75 families.
At Open Day 2019, Frances will be presenting on SEND and the rights in law of the vision impaired child to support in the early years and at school. Alongside our second IPSEA trained education advocate, Claire Brinn, Frances will also be running workshops for parents and carers and answering your individual questions.
Our education advocacy service is available free of charge to members of the Nystagmus Network.