‘Nothing about us without us’. Including Lived Experiences of People with Intellectual Disabilities in Policy and Service Design

The rights of people with disabilities to be included in the design of policy and services are asserted in international treaties such as the United Nations Convention on the Rights of Persons with Disability and increasingly reflected in disability policies across the world. Approaches to facilitating the inclusion of lived experiences and the perspectives of people with disabilities include consultative, advisory or governance bodies, as well as co-design of projects, advocacy work of Disabled Person’s Organisations and self-advocacy groups. The success of these various approaches depends on their power to influence policy and services, the way they operate and the methods they use to support the participation of people with disabilities. This chapter reviews evidence about different approaches to tapping into the expertise people with disabilities have from their lived experiences of disability, and considers the types of practices most effective for working together with people with disabilities and some of the unresolved issues that support workers, managers and policy makers must grapple with to further the rights of people so that there is ‘nothing about us without us’.