A conceptual framework for self-advocacy by people with intellectual disabilities

Abstract

Background: People with intellectual disabilities are generally not consulted in the development of public policies, which impact their lives, and little is known about how to best empower people with intellectual disabilities to enable them to participate in public policy processes.

Objectives: Our article reports on developing a conceptual framework to support self-advocacy by people with intellectual disabilities in social and health-related policy development in South Africa.

Method: Our qualitative study was conducted using empowerment theory and integrated the concept of Ubuntu as a guide and was underpinned by a phenomenological approach. Data were collected through a scoping review, semi-structured interviews and focus groups. The scoping review was conducted using the Joanna Briggs Institute (JBI) scoping review protocol. Semi-structured interviews and focus groups were analysed using framework analysis. Data sources were triangulated to develop the conceptual framework, using a process adapted from three approaches used to develop similar conceptual frameworks.

Results: Data triangulation identified three core elements for self-advocacy: (1) personal development; (2) creating a supportive environment to facilitate the empowerment of people with intellectual disability; and (3) improved policy participation opportunities.

Conclusion: Participation of people with intellectual disabilities in public policy decisions, which can improve their quality of life, can be supported by developing their capacity for participation and increasing policymakers’ understanding as well as facilitation of what is needed to support their participation.

Contribution: Our study offers a framework for a comprehensive approach to supporting people with intellectual disabilities in participating in and influencing public policy processes that impact their lives.