Gathering information for Joe’s plan

30 October 2015 | By Tom Waters

This month, our guest blogger is Joe’s Mum Debbie, who gives an account of how information was gathered for Joe’s Education, Health and Care Plan. Joe is 18 years old and does not use words to communicate effectively. Here, Joe’s mum Debbie describes the unique challenges faced in gathering information for Joe’s plan and deciding on the best course of action for him.

Joe’s EHC plan was a transfer from a Statement that was originally written when he was three years old. Although bits of this had been updated since then, most of the information and reports were therefore fifteen years out of date. This was a real problem, as the officers tasked with writing Joe’s plan didn’t know him and had only this paperwork to go on. Annual review reports were very minimal. The local authority would have commissioned an educational psychology report had I pushed it, but this would have been of limited value too, as Joe would not have interacted or co-operated with an unknown person for assessment.

The good side of this almost total lack of useful professional information was that I felt I had a blank sheet to provide evidence about what Joe liked and didn’t like: what was important to him as a person as well as a pupil, and the hopes and fears that guided our aspirations for his future. The fact that I knew Joe’s history and could provide that essential information was critical. No other person or agency had all of this information, and it actually was and is central to making a ‘best guess’ for what Joe would want to do now and next, where he might thrive and what circumstances might cause him distress.

Joe has been described as having  ”challenging behaviour” in the past, and this history was documented in earlier Statement reviews. It was very difficult at first to even have speculative conversations with the local authority and community providers about more local and inclusive options for Joe. Before I had written anything for Joe’s plan, a private meeting at the LA had apparently recommended specialist provision away from his local area, and all of the local colleges had refused him based on a ‘desktop assessment’ – meaning an assessment from the LA’s paperwork, containing mostly fifteen-year-old data. This outdated information therefore had to be challenged. Fortunately, Joe’s then class teacher was willing and able to write a report stating that Joe did not present with such behaviour in school any more, and he offered to speak to any local providers and allow them to visit to see Joe and ask the school questions. This was literally life-changing for Joe.

Addressing aspirations and “best guessing” Joe’s views and wishes in the absence of word or symbol based communication meant relying on the knowledge and observations of those who knew Joe best, and cared most about his best interests: primarily his family. Joe will not even express a preference between an object we know he likes and one that he doesn’t, so careful and prolonged observation is needed to know what Joe enjoys. Similarly, he can be very quiet and expressionless in many situations, so it takes seeing Joe in many situations on repeated occasions to know when he is relaxed and when he is stressed. Even staff in Joe’s special school sixth-form, for instance, had no idea how vibrant and bouncy Joe could be in less structured environments until he joined the Outward Bound walking group one day. None of the professionals involved in writing Joe’s plan had any knowledge of Joe in a more inclusive environment, so I had to be his witness and therefore his voice.

Telling Joe’s story was the most important thing to do to keep Joe at the centre of his aspirations. Like any 19-year-old choosing a college course and where to live and who to be with, Joe would surely base his decisions around his strengths – where he feels safe and accepted, and whose company he has enjoyed in the past. This is a very different model compared to making such choices based on his disabilities. Telling Joe’s story in one meeting changed the whole direction of his plan.

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