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This purpose of this paper is to examine the role of engagement and empowerment in “Transforming Care”, for people with a learning disability. The aim is to shift the balance of power so that people are able to live ordinary lives in the community, in the home they choose, close to people they love. It shares ideas to support people to take control over their own lives and to influence the system, so that it works with people, rather than “doing to” people.

The paper examines barriers and enablers to people having their rights as citizens. So that people have as much choice and control as they are comfortable with to live an ordinary life (bearing in mind any legal restrictions). The paper includes people’s involvement in system/service redesign. It critiques traditional views of looking at language, participation and power. The authors have used the language throughout which people have told us they prefer as a descriptor.

The authors present a framework for looking at the power of, and around, people with a learning disability who have mental health issues or have displayed behaviour that can challenge services.

This paper offers advice on how to address power imbalances at individual level and at organisational/system level. It looks at the language we use, the information we share and how we work with experts by experience to ensure we can transform care and support and enable people to live ordinary lives as citizens.