Talking Transitions

MPCustard

When moving between schools or from one year group to another, it’s important that the changeover – or transition - is as smooth as possible and that the right support is still in place. 

Max, 23, is a disabled young person from Bedfordshire. Today, he tells us about his experiences with the transitions process, and how he is helping to shape things in his local area. 

It all started when I was six. At this age, I had an adrenal crisis which was misdiagnosed as encephalitis. This started the rollercoaster ride that is now 17 years long. 

I began getting support with putting my thoughts onto paper at Year 10 (age 14). This was when I was finally correctly diagnosed with Adrenoleukodystrophy (ALD) after two years of suffering with constant headaches. It was after this terminal diagnosis that I was given support through the Exceptional Needs Funding that, at times, was only granted just days before I returned to school. 

Throughout my time at school there were systems created to help me with my work, and when going into college, they were very helpful with being able to give support - carrying on from what was already in place. However, the problems with the transitions process were only noticed when in higher education, when an outside body needed to review and afterwards fight for my right to support. 

This was a long and drawn out process. It felt as if I was between a rock and a hard place, but I was fortunate that college funded the areas where the outside funding lacked. This was divided between support outside of class to aid proofreading and help in classes with note-taking and such. 

Now, I’m at a truly loose end on what to do next after being in education and occasional part-time work - where my difficulties allow me to. However, one of the opportunities that I was given was working with Central Bedfordshire Council and a team of fellow young people with disabilities. Together we improved - along with many other specialist teams - the way that the transitions information is given to students and parents in my local area. We also looked into a big group of regulations called ‘the local offer’. 

Don't worry, we had never heard of it either! Many parts had nothing to do with the end user, you. After wading through pages of council jargon, we boiled a vast pile of papers down to the key points that mattered. 

This task also highlighted how complex the system was and explained why I was lost within it. Important information wasn’t ever being handed to me at crucial stages within the transitions process. 

During my time in transitions, I’ve found that it is key to let everyone communicate freely. Inform anyone who you meet that they have your permission to talk to anyone they need to. This will stop a lot of time going to waste when looking for Person A to talk to Person B and C, who is required to get help in place. 

Even better, attempt to get everyone who is involved together in one room and get everything done at once. This can be a pain and take time to organise, but everyone gets their work done very effectively and no one can say they did not get this letter or that, as they were all there taking notes at the same time. Having someone independent taking note of everything mentioned is also a good idea. 

One last thing to ask yourself is: does everyone know what they need to know to help you best? 

How supported were you when you were in school? Did you receive the same support throughout, and was the transition of support smooth and easy? Let us know in the comments below.