Donald Beasley Institute

Accessible summary People with learning disability who are living independently can find it hard to live well on their limited income. We interviewed 20 adults with learning disability who were living independently. They told us that living independently meant that they had choices. They also told us that it was difficult to afford things like going to dentists and doctors or going on holiday. Some liked to manage their own money while others liked having other people help them manage their money. Governments need to make sure people with learning disability are getting the support they need. AbstractBackgroundWithin Aotearoa New Zealand (ANZ), disability policy is directed at increasing choices for disabled people. However, funding to individuals remains insufficient to address wider social inequities that exist. While people with learning disability enjoy the freedom of living independently, they can be at risk of poor health outcomes and limited opportunities to fully engage within their community.MethodThis qualitative research explored the experience of living independently with 20 adults with learning disability within ANZ. Taking a constructivist perspective, interview transcripts were analysed to develop an understanding of their experience. Multiple readings resulted in comparison and contrast of data. The researchers discussed developing themes before settling on final themes.ResultsWith regard to money management, two themes were identified. The first illustrates the challenges of managing a budget, while the second highlights what people's limited budgets meant in terms of how they were able to live.ConclusionThis research reinforced previous studies whereby people with learning disability place a high value on having choices. However, it also demonstrated that social inequities within ANZ are not being addressed, as without other financial support, people on a benefit struggled to afford medical and dental care, or holidays and other leisure activities.

For people with a learning disability, Inclusive Research is promoted as the right way to redress the hermeneutical injustice of their voices and theorising being excluded from the processes of knowledge production. This article describes the experiences and reflections of non-disabled researchers co-researching with people whose subjectivities were thought to lie beyond qualitative research. Through four stories, jointly told, we detail how those most at risk of exclusion from the academy first challenged and then took the research encounter beyond the linear, assimilative certainties of research ‘on’ or ‘with’ people with a learning disability towards the outer, cutting edges of qualitative research and an epistemology that might more authentically be said to be ‘by’ them.

Background Participatory action research (PAR) offers potential for people with an intellectual disability to have an active voice in service provision. However, ensuring their meaningful engagement is not without challenges. Guided by PAR, a recent project to develop a quality of life tool provided learning opportunities for the lead researchers. This paper addresses 3 issues raised by Ramcharan, Grant, and Flynn (2004) in relation to participation of people with intellectual disability in research.Method Informed by reflective practice, this paper draws on a combination of field notes and written reports to critically examine the 3 issues related to effective participation.Results Although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was variation in participants' contribution. With both data collection and analysis, prior experience and confidence influenced the participation of co-researchers. The financial and the practical support of the contracting organisation were crucial to enabling people to take part.Conclusions For researchers interested in PAR, planning well whilst maintaining flexibility would appear to be key to achieving maximum participation.