Personalisation and disabled people: The rhetoric and the reality. A discussion paper regarding aspects of the transformation agenda

Abstract

This critical discussion draws on the authors’ personal and professional experiences of personalisation. It argues that personalisation is a persuasive concept, constructed by political rhetoric, but requiring careful evaluation of its meaning and purpose. It has been progressively developed over the last few years as a guiding principle in the provision of social care services to people in the UK. For disabled people this has meant significant changes in the way services are delivered and the opportunity to receive support through means of direct payments or personal budgets, enabling them to have greater choice and control over the services they receive. In principle this should allow services to be tailored to individual needs by supporting disabled people to employ personal assistants and design their own packages of care. Whilst this has been a positive development in people’s lives, the idea of personalisation has been subject to many critiques. These will be discussed, and it will be argued that real improvements in people’s lives are not just dependent on receiving individualised funding. Wider structural issues, as well as prevailing attitudes and understandings of disability in society and by professionals, are critical to consider, if the physical and social barriers which obstruct people’s access to valued social roles and lives in the community are to be removed. For services and practitioners to become more enabling, there needs to be more awareness of and sensitivity towards values and messages inherent in the social model of disability and, on a more practical level, towards the sheer complexities of managing budgets and personal assistants. Through the experience of one disabled person, important factors impacting on the reality of personalisation will be considered, with the intention of deepening our understanding of the experience of personalisation beyond the popular rhetoric.