In the course of the work that Genio has conducted, it has become clear that there is a need for the establishment of a National Intellectual Disability Advocacy Initiative that would strengthen the voice of those with intellectual disabilities. Such an initiative could include independent citizens who may be involved in helping to represent the interests of those whose capacity precludes them from speaking on their own behalf. Genio commissioned a scoping study to identify the best approach to developing such an initiative. The key tasks of the scoping study were to describe the key features of a National Intellectual Disability Advocacy Initiative and outline an appropriate approach to developing such an initiative based on a clear identification of strengths that could be built upon in an Irish context and learning from other countries.

The following key points emerged from the study;

• In exploring the wider context of self-advocacy, it is seen how claiming one’s voice has been shown, in other arenas, not just to have a profound effect on the individual but on services and the wider system.
• A number of policy and legislative changes, both recent and anticipated, have the potential to reframe current disability policy towards a system of supports that enable active citizenship and independence – including a system of individualised funding to underpin the provision of supports and to provide greater control and choice to the person and their family.
• The establishment of such an initiative will need to be catalysed by a combination of activists and funders while setting specific targets for the achievement of the endorsement, engagement and active participation of people with an intellectual disability.
• The leadership of the initiative should transition within this timeframe to a board comprising up to ten people with intellectual disabilities, supported by independent “allies” whose sole role is to support them in achieving their goals.
• Once formed it could be prudent, in its early years, for the advocacy initiative to seek a hosting arrangement with an established organisation to provide administrative and other organisational supports while it is focusing on establishing its mission, membership and profile.