The question is, if you are a person with severe and profound learning disabilities, what do rights mean to you?

In the course of this study the rights of people with severe and profound learning disabilities are examined as stated in legislation, social policy, and organisational practice. The past thirty years has seen many positive developments in terms of planning and delivery of services. Participation and inclusion are central themes for service providers. Parents act as advocates for their severely disabled sons and daughters which is why interviews with them was sought. In the lives of their children, rights have different meanings.   Rights are about quality of life if you have multiple needs. Communicating these needs, wants and wishes is difficult. Parents have in-depth knowledge, information and insights about their children and how they engage with the world provide a rich source of data which is often left untapped by service providers.

The particular service user group discussed, people with severe and profound disabilities, communicate with a different language. It is a language of gestures, noises, eye points, deep breaths, sighs, tongue thrusts, smiles, frowns and movements. The challenge is ours to learn this language, interpret it and respond to it.