Many families affected by the various forms of Neuronal Ceroid Lipofuscinoses (NCL), commonly referred to as Batten disease, will be faced with numerous important decisions about education for their child. The Batten Disease Family Association (BDFA) aims to help them get the best possible provision, as well as advising and supporting those professionals working with them.
We are able to provide unique support through our BDFA Education Advisor (a qualified teacher of the visually impaired who has worked with many children and young people diagnosed with the various forms of NCL).
This leaflet offers information about support available for individuals who have Special Educational Needs (SEN) due to a diagnosis of NCL, as well as providing general advice for families who wish to ensure their child receives the best educational experience possible. We recommend families share this document with all the professionals from education, health, social and other services working with them.
Together for Short Lives’ interactive guide aims to help families of children and young people in England with life-limiting conditions join-up their assessments, plans and services across education, health and social care. Free to download and use, it helps families to understand their rights and make the most of the new special educational needs and disability (SEND) system, which is being implemented by government, the NHS, local councils, education providers and others. It has been funded by the Department for Education and written by Anna Gill OBE, a parent carer of a young person with a life-limiting condition, on behalf of the Council for Disabled Children (CDC).