Development of a conceptual framework to inform self-advocacy for social and health-related policy priorities of adults with intellectual disability

Background: People with intellectual disability are generally not consulted in the development of public policies which impact on their lives. This study focuses on the development of a conceptual framework to support self-advocacy by people with intellectual disability for the inclusion of their priorities in social and health-related policy in South Africa. The study was informed by empowerment theory, with the integration of the concept of Ubuntu. Method: The study design was qualitative and was underpinned by the hermeneutic phenomenological approach. This approach allowed the researcher to understand lived experiences of the research participants in order to gain deeper insights regarding core elements of a conceptual framework for self-advocacy through interpreting their views on how they understand those experiences. Data were collected through a scoping review, semi structured interviews and focus groups. Twenty-five participants were sampled for this study; 10 participants were policy makers and service managers, five were self-advocates with intellectual disability, five supporters of people with intellectual disability and five parents/carers of people with intellectual disability. Sampling in this study was purposeful, policy makers, service providers, supporters and parents were purposefully sampled to participate in the study. Snowballing was used to identify participants with intellectual disability involved in advocacy groups in local Non-Profit Organisations. Data were analysed thematically, using ATLAS.ti. software. The framework approached guided the data analysis process. All data sources were triangulated to develop the conceptual framework for self-advocacy by people with intellectual disability. The development approaches used for three similar frameworks were considered in deriving a process to develop this study's conceptual framework. The first framework that focused on strengthening the participation of people with psychosocial disability and their caregiver's involvement in the National Institute for Mental Health England. The second framework was a self-advocacy framework by Test and colleagues, and the third was Cook's multi-cultural and social justice counselling competencies framework. Results: Data triangulation identified three core elements for self-advocacy, a) personal development, the main contention of this element being that in order for people with intellectual disability to self-advocate, self-development is essential to their participation in self-advocacy in policy processes; b) creating a supportive environment through the empowerment of people with intellectual disability – in order for people with intellectual disability to fully participate in self-advocacy they require empowerment through two main sub-elements: self-advocacy skills development and supported self-advocacy; and c) improved policy participation opportunities, this element focusing on the importance of concerted effort to ensure that there are policy participation opportunities which will permit inclusive participation of people with intellectual disability. Conclusion: A wholistic approach is needed to increase policy makers understanding of how best to empower people with intellectual disability to provide input to public policy decisions which can improve their quality of lif