How a one-page profile can support someone with severe learning disabilities and autism in life; from changing schools to choosing the right hairdresser. Joe’s experience is testament to how powerful sharing information and communicating ‘what is important’ can be.
Written by Joe’s mum, Debbie
Joe has severe learning disabilities and autism. He needs a lot of support to communicate, to be included and to stay safe. When Joe was eight years old I went on a Families Leading Planning course and put together an Essential Lifestyle Plan for Joe. This transformed his life, most notably by leading to him having some time in a local mainstream school and eventually leaving his non inclusive, specialist school altogether.
Because of the complexity of Joe’s needs, the ELP was fourteen pages long. Although this detail was crucial for Joe’s main carers, it was overwhelming for people who had less frequent or intense supporting roles in Joe’s life. Joe’s Dad suggested that we needed a ‘quick start guide’ similar to the quick start installation instructions that came with electrical gadgets! At first I thought it would not be possible to condense key information to one page, but we did manage it. On Joe’s one-page profile it signposts people to his plan for more detail. It includes Joe’s main likes and dislikes, and the vital support needed to keep him happy and safe. We also adapted the one-page profile into a brief powerpoint with pictures to introduce new school staff to Joe. This worked very well.
The one-page profile has been an excellent introductory tool. We have been able to pass it to people in shoe shops, at holiday parks, and to reception staff where Joe has had to wait and where his behaviour might seem odd. We have used it to vet potential hairdressers using a system where, if they seem phased by the one-page profile then they are not suitable, but if they seem positive then they clearly were. We have found it a very inclusive tool as the language and style is not medicalised or full of specialist jargon. This makes people who do not live or work in the disability world feel confident that they can know how to interact with a young man like Joe. It takes away the fear and demonstrates our common humanity – we all have our likes and dislikes after all.
Ideally, the one-page profile would be on the front of Joe’s medical records, in his class register, and up on the wall of his school. This would enable all staff – particularly supply staff – to know his needs at a glance. It would also keep a sense of who Joe really is as a person at the centre of carers’ minds.
I’d like to live in a world where one-page profiles are so common, that it is standard practice to email them to any destination, person or service that may come into contact with a person with additional needs. It has opened up doors for Joe and for us and I strongly believe it could for other people too.