“Stop, Look and Listen to me”: Engaging children and young people with severe learning disabilities

This report summarises the work we (the Challenging Behaviour Foundation and the Tizard Centre) did to find new ways of “asking” five young people with severe learning disabilities (whose behaviours are described as challenging) what they enjoy and who or what supports them to do those things.We were able to find out information about what the young people enjoy (and what they don’t) in a range of ways and our mixed methods approach allowed us to gather rich information from each young person in answer to our questions.We found that family carers, advocates and staff who knew the young people well were key to seeking their views and perspectives successfully. Their role included: preparing our researchers with information about communication methods, observable indicators of enjoyment and behaviours that indicate the activity should be stopped. They also had a key role in supplementing the information we gathered from and with the young people themselves with more abstract information about the support available to young people to access enjoyable activities.We would like to see all commissioners and providers of support for children and young people with severe learning disabilities taking active steps to seek their views and preferences directly on a regular basis. We would also like to see all consultation processes relevant to disabled children and young people adapted to include a strand which is accessible to young people with a severe learning disability.We hope this small scale, unfunded piece of work will be a first step towards developing new and better ways to seek the views, wishes and perspectives of people with a severe learning disability (of all ages) and that such engagement becomes par for the course, rather than an unusual and innovative project.