Personalisation policy in the lives of people with learning disabilities: a call to focus on how people build their lives relationally

Andrew Power,Abigail Croydon,Hannah Macpherson,Melanie Nind,Andy Coverdale,Alex Kaley,Edward Hall

doi:10.1177/02610183211004534

Abstract

Social care provision across high-income countries has been transformed over the last ten years by personalisation – a policy agenda to give people with eligible support needs more choice and control over their support. Yet the ideological underpinnings of this transformation remain highly mutable, particularly in the context of reduced welfare provision that has unfolded in many nations advancing personalisation. How the policy has manifested itself has led to an expectation for people to self-build a life as individual consumers within a care market. This article draws on a study exploring how people with learning disabilities in England and Scotland are responding to the everyday realities of personalisation as it is enacted where they live and show the relationality inherent in their practices. We propose that the personalisation agenda as it currently stands (as an individualising movement involving an increasing responsibilisation of individuals and their families) ignores the inherently relational nature of care and support. We propose that social care policy needs to recognise the relational ways in which people build their lives and to advocate a redistribution of responsibility to reduce inequalities in the allocation of care.

Highlights

In many countries in the Global North, ‘personalisation’ has become the core principle in the provision of social care and support (Carey et al, 2019; Hamilton et al, 2017)
We propose that the personalisation agenda as it currently stands ignores the inherently relational nature of care and support
Despite growing policy adoption, the concept and associated rhetoric has been critiqued as hollow, ambiguous and open to other forms of inscription (Ferguson, 2007; Pykett, 2009; Spicker 2012). These critiques have highlighted how personalisation has always been an ideology rooted in self-determination, but that this has become inflected with a neoliberal agenda

Summary

Introduction

In many countries in the Global North, ‘personalisation’ has become the core principle in the provision of social care and support (Carey et al, 2019; Hamilton et al, 2017). In contrast to this dominant narrative, we sought to explore how this ‘self’ could be understood relationally to characterise how people are building meaningful daily lives in their communities (thereafter using the short-hand ‘building a life’), through their own support networks, activities, and forms of learning, in relation to each other, and with family, friends, advocates, and support organisations.

Results

Conclusion