Children and young people with learning disabilities are often left out of decisions and processes that impact their lives, from every day decisions about what to eat or wear, through choices about their education or care, to life changing decisions such as whether to move away from home.

Families report shockingly dismissive attitudes towards consulting their children. One family explained how an advocate, appointed to represent their daughter’s views about her care, came out of a meeting saying “well I can’t find out what she thinks about it because she can’t speak.”

Others find that professionals and staff may be well meaning but haven’t been equipped with the skills or training they need, for example the ability to use new technologies or to seek views through methods such as Talking Mats.

All children and young people are able to tell us what they think and feel in many ways and have a right to be heard. A new report, “Valuing the Views of Children with a Learning Disability” developed by the Challenging Behaviour Foundation and Mencap gives examples of how organisations and have actively sought and responded to the views of children with severe or profound and multiple learning disabilities in ways that other people can replicate. It tackles misconceptions, signposts further useful information and is aimed at anyone involved in supporting children or young people with learning disabilities including schools, CAMHS and short breaks. It will be of interest to those consulting young people in order to shape future services (including commissioners in SEND and Transforming Care Partnerships.)

This resource will be followed in the New Year by a report of the “Stop, Look and Listen to Me” project, based on a method developed by Dr Nick Gore at the Tizard Centre, which consulted children and young people with severe learning disabilities and behaviours described as challenging.

Behaviour itself is a form of communication and development of effective alternative communication methods can help to reduce challenging behaviours. As one Dad put it “If our son had been taught to communicate “stop” or “finished” when he was young, he would not have needed to throw his plate across the room at the end of every meal. Because our son generally understands everyday practical received speech, enabling him to communicate his wishes and needs has never been regarded as important. Some members of staff team question the need for them to learn Makaton saying, “He understands what we say when we speak to him”. The thought that he might learn to use signs to enable him to communicate with others does not seem to occur to them. The importance of communication and the use of a total communication environment cannot be overestimated.”

Download “Valuing the Views” here