Accessing education at any level from nursery to further education is a complex minefield to navigate when you live with a rare condition. There is finding the right placement, statutory statements and care plans, funding streams, personal assistance, risk assessments, adaptations, specialist equipment, staff training, peer engagement, social worker engagement and `reviews`... and that's all before the student sets foot through the door.
Some schools get it right almost all of the time, some just about get by and others can fail disastrously leaving parents overwrought and children trapped with limited opportunity and feeling isolated.
Then there are those who fall through the net due to being in that undiganosed limbo, and in some cases are entirely unable to access appropriate education.
What are the biggest challenges facing parents and young adults today in the journey through specialised or mainstream education?
We would love to hear your RARE Education story x
Rare Revolution Editor