The BDFA works with mainstream and specialist schools across the UK.
The Family Support and Advocacy Team is able to participate remotely in annual reviews and can support schools and parents with Education Health and Care Planning. Where there are complex issues to consider in enabling successful integration into the school for the child, we are able to submit reports for the plans and support schools and parents with what to think about for the future and the information which needs to go into the plans.
The Team provides annual online training sessions to professionals; Teachers, Teaching Assistants, Therapists and social care staff. These sessions are 1hr 15mins each and cover 3 area's:
- What causes Batten disease, how it affects the child, the holistic team approach to supporting the child.
- Communication Changes, Visual Impairment, aids and adaptations.
- Childhood Dementia, Stress and Distress, how the child behaves differently due to disease progression and how we support positive outcomes when supporting the child's loss of abilities.
We also work with individual educational professionals.
The Family Support and Advocacy Team works with schools to provide tailored 1 hour training opportunities which can fit well within school timetables. We encourage any staff who have a query or need advice that is Batten disease specific to contact Family Support.
For more education support parents can speak to the following organisations:
Sense - are a national charity who work with Multi-sensory impaired children. They provide lots of support for families including support with educational meetings and they also can give legal guidance if you are having problems with the Education Health and Care Plans. They also do home visits and school visits to see how best they can support you as a family.
IPSEA (Independent Provider of Special Education Advice) - All children and young people with special educational needs and disabilities (SEND) have a legal right to an education that meets their individual needs. But many tens of thousands of children and young people with SEND are not getting the support they are legally entitled to.
IPSEA is the leading charity in the field of SEND law in England, and they provide free and independent legal advice and support to families of children and young people with SEND. They also provide training on the SEND legal framework, and influence policy at both a local and national level.