Many families affected by Batten diseases will be faced with numerous important decisions about education for their child. The BDFA aims to help them get the best possible provision, as well as advising and supporting professionals working with them.
We work across the UK and each has its own named multi-professional meetings for children with Batten disease who are likely to have special education needs.
In each of the 4 countries of the UK, a child with Special Educational Needs or Additional Support Needs or Additional Learning needs will be assessed to ensure this is necessary, once the child has a statement of need it will be important to ensure they have access to the most suitable form of education for their needs and have an annual EHCP review, either in mainstream education with additional support coordinated by the schools SEND-Coordinator or in a school for children with special education needs.
BDFA support and advocacy team can:
- Attend statutory EHCP* meetings as requested by Parents/professionals remotely across the UK
- Attend any local authority meetings or Multi-disciplinary Team meetings as necessary remotely
*Statutory EHCP meetings may have a different title in Scotland, Wales and Northern Ireland.
Together for Short Lives have produced a detailed interactive guide which aims to help families of children and young people in England with life-limiting conditions to 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). We recommend families share this document with all the professionals from education, health, social and other services working with them, and although specific to education, health and care partnerships in England, is an equally useful resource for Batten families across the UK.
Sense 's website covers the support system in England for children and young people with special educational needs and disabilities (SEND).
Each topic page is a clear, easy-to-use guide that answers key questions on what SEND is, what the Local Offer is, how the support system works in early years settings and schools, and in education and training for those over 16.
Education, health and care plans and challenging decisions, appeals and tribunals are covered, too.
There’s also an overview of the different systems in place in Wales, Northern Ireland and Scotland.