Doing disability research: equal lives for equal people

by Phillip Curry, Carol Hamilton, Hasheem Mannan, and Patricia O’Brien, National Institute for Intellectual Disability, Trinity College, Dublin.

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While many milestones towards supporting an ordinary life for intellectually disabled people have been met and passed, full endorsement of the right to participate as equal members of society for members of this group still requires an alteration in ways of thinking about how they are to be included in the everyday life of their local communities. The National Institute for Intellectual Disability, Trinity College, has been awarded funding from the European Commission’s Marie Curie Transfer of Knowledge Programme for the development and implementation of a four-part research project. This project includes . A national survey of people with intellectual disability . A national survey of family members

  • The creation of a national archive to house the life-stories of people with intellectual disability and family members
  • The evaluation of a set of resource tools for use by intellectually disabled people to learn about research.

All strands of the project reflect the overall aim of the NIID, which is to facilitate the full inclusion of people with intellectual disability through education, research and advocacy.

The Transfer of Knowledge Programme (TOK) will provide information in relation to two broad questions: what is life currently like for adults with intellectually disability and family members in Ireland, and what would members of these two groups like to see happening in their lives in the future? A number of people working in the research and service sectors in Ireland have already explored aspects of these questions. In relation to people with intellectual disability, it has been suggested that members of this group appreciate the support they receive to engage in social and community activities and that they find these activities personally satisfying (Griffiths 2002). However, many continue to have unfulfilled desires for more economic, social and physical independence (Gormley 2003). Some research has also been undertaken in relation to family members. These findings have provided information about families’ views of the quality of residential support (Walsh et al. 2001), carers’ access to services (McConkey 2003), use of respite care by Irish families (MacDonald, Fitzsimons and Walsh 2006), and levels of time, energy and resources expended by families to secure mainstream educational placements for their children (Shevlin, Walsh and McNeela 2005). The NIID project aims to build on these findings. In addition, an innovative feature of this project is that a series of experienced researchers from other affiliated EU states will join the NIID team in transferring their knowledge, skill and competences to all aspects of the programme.

Three of the TOK projects are currently being developed under the guidance of an advisory group of people with intellectual disability, family members, support service agencies, public agencies involved in policy, advocacy, and research and researchers working in the intellectual disability field. The guidance of this group will be central to the successful outcome of the research process, as these projects present a number of challenges. The requirements of people with intellectual disability do not always fit into survey instruments for gathering and processing information, thus how to include people with severe disabilities within a representative national survey sample presents an ongoing challenge (Phelan 2005). Yet the independent voice of all people with intellectual disability is needed to inform future development of policy documents and support structures. Families have previously provided survey responses based solely on services and support issues. This survey will include these aspects; however, it is anticipated that the information gathered will also include the broader family/community interface in which services, supports, needs and wants are placed.

As part of the NIID’s commitment to inclusive processes, the first stage of two of the projects will involve a qualitative dimension, bringing together targeted regional focus groups for people with intellectual disability and family members, respectively, to talk about their everyday experiences and future aspirations. This stage also follows international trends in emancipatory research which acknowledges that any research undertaken with groups who experience areas of social need should be fully consultative and inclusive of the voices of those concerned. Emergent themes from these discussions will contribute to the second stage, consisting of surveying a nationally representative sample of the two groups involved. Further details of the process will be made available as the consultative process is fully implemented. The life-story project sits alongside these two surveys, where initially in-depth interviews with older people with intellectual disability will be undertaken. This process will expand later on to include people of all ages and, ultimately, the life-stories of family members.

It is envisaged that the findings of Doing Disability Research will provide detailed insight into the present and future requirements of members of these two groups. It is hoped that this insight will enable policy makers and service providers to continue to develop creative strategies to bridge the gap between current service provision, so to make the future aspirations of people with intellectual disability and their family members a reality.

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