Disabled people's user-led organisations: past, present and a secure future?

This thesis investigates disabled people’s user-led organisations (DPULOs) in the UK using the themes of: historical roots; structures and characteristics; key challenges; and future opportunities. The economic downturn in 2008 resulted in cuts to DPULOs creating a market for social care services and competition between DPULOs and other sectors. An imbalance of power relationships with financial stakeholders has created an environment where DPULOs have found it increasingly difficult to develop services and remain viable. The aim of the study was to identify the factors that might support the future security of DPULOs. The study draws on the transformative paradigm (Mertens, 2007) and is firmly located within the disability community and led by a disabled researcher. The research was a two-stage sequential design with data collected through semi-structured interviews with 12 chief executive officers (CEOs) of DPULOs, the findings of which informed a wider survey across DPULOs in the UK. The research shows that power has shifted over time, but during economic austerity, ‘value for money’ is given more importance than experiential knowledge, leaving DPULOs vulnerable. Some values remain consistent including independent living (IL) and the social model of disability although equality is now seen as more important. While the unique and core aspect of DPULOs is experiential knowledge, knowledge in ‘business’ development is lacking in many DPULOs, who need to upskill their workforce or attract people with these skills onto their boards. The current definitional inadequacy of a DPULO is highlighted as focusing on internal characteristics at the expense of external power relations between DPULOs and their funders. The study data suggests that for DPULOs to thrive, the Office for Disability Issues (ODI) needs to move beyond mechanistic criteria for what constitutes a DPULO and acknowledge the wider changes both within and external to DPULOs as well as changes within the disability community as a whole.