Read the Challenging Behaviour Foundation's mission statement, our vision for the future, and the values which underpin our work.
When Daniel was diagnosed with the rare genetic condition Cri du Chat syndrome shortly after he was born, we had no idea what to expect. When Daniel started to bang his head on hard objects when he was a year old practical information and support was not readily available, and we struggled as a family to get good advice about how to support Daniel.
By the age of nine, Daniel’s behaviours were such that we were all struggling to contain them – at home, school and respite – and it was decided that he needed to go to a 52 week specialist residential school. Unfortunately this school was over 270 miles from our home.
At the school, they had what to us was a “new” approach – they systematically looked at the function of Daniel’s behaviours – what purpose the behaviours served for him. And at the same time they worked on developing new skills and improving his communication (Daniel communicates non verbally and uses signs and symbols). At this point we thought “why didn’t we know this and do this when he was much younger?”
Vivien enlisted support and advice from a range of individuals about setting up the Challenging Behaviour Foundation, and it was registered on 14th February 1997 as a charity. It was started with no resources, other than determination to ensure that individuals with needs like Daniel’s and their families should be able to access the right information and support, in the right place and at the right time.
From its earliest days the CBF has always believed in the principles of working in partnership, pooling expertise and sharing information and good practice. Various professionals were approached, and persuaded to write information leaflets on topics in which they had expertise (an ongoing technique still employed today!). These leaflets, provided free of charge to parents, provide factual information, explanations and practical guidance. They were originally copied on a single sheet donated copier, in a small office area converted from part of Vivien’s garage!
The CBF has made significant progress since its humble beginnings, but we are aiming high and there is much still to do. Our ultimate aim is that there is no need for a CBF – everyone gets good support at an early stage and we put what we know works into practice to enable everyone to have a good quality of life. We know this can only be achieved by working together, by empowering families with information and support, and by strategic influencing, and we hope you will help us to make a difference.
The message I would like to give to other families is that you should not be made to feel guilty because you are told your son or daughter is the most difficult to manage, or most expensive to fund. It is entirely possible to support individuals with complex needs to have a good quality of life in the community if the right support and services are designed around them. You are not alone, and the Challenging Behaviour Foundation is here to support you. Vivien Cooper
Video about how the CBF started