FOP and School

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FOP doesn’t affect the person’s intelligence or cognitive abilities.  However, living with an ultra-rare condition such as FOP does bring challenges most people can never imagine, and considerations do need to be taken into account to ensure the best school experience possible.  Young people with FOP leave high school with a number of qualifications, and many people with FOP go on to have rewarding and fulfilling careers.

As a teacher it can be understandably frightening and overwhelming to be informed there will be a child with FOP in your class.  In order to support teachers and educational practitioners, we published the book ‘Supporting a Child with FOP: a practical guide to their learning experience’ The book was written by two experienced teachers, to offer clear information and advice.  There is also space in the back of the book to personalise it to meet the specific needs of the child, and to record any adaptations or information that is personal to that child.   It can then serve as an ongoing guide and passed through the school as the child moves through the years.

FOP Friends is happy to speak with any educational setting to answer questions or provide further advice or guidelines to ensure the child with FOP reaches their potential and is able to access the same high-quality educational experiences as their peers.

Emergency Medical Information

Click the image to download an editable copy of the Emergency Medical Information poster, as shown in Appendix 4.

Same but different: a look at life with FOP

The IFOPA has produced a short video, which is ideal to share with classes, that explains a little bit about FOP.  It is also useful to share with all classes to highlight the importance of accepting everyone and celebrating differences.

Applying for an Education, Health, and Care Plan (EHCP)

Special Needs Jungle, is a parent-led website that provides resources and informed opinions about children and young people who have additional needs.  Their website offers a wealth of specialist advice covering most aspects of the special needs process.

They have produced, in conjunction with the Department for Education, a series of flowcharts to help parents and carers navigate the complex process of gaining an EHCP for their child with FOP.  Click on the image to download the charts.

Coming soon….