Personalisation and social justice: a lost commitment? an analysis from a capability perspective.
Benoot, Toon Daan Bob (2018). 'Personalisation and Social Justice: a lost commitment? An analysis from a Capability Perspective.' Paper presented at the annual conference of the HDCA, Buenos Aires, Argentina 2018.
An evolution towards personalisation of care can be noted in modern welfare states since the 1990’s (Brooks, Mitchell & Glendinning, 2017; Fotaki, 2011; Kremer, 2006; Wilberforce, Glendinning, Challis, et al., 2011). This implies a shift from 'traditional care’ in care services to more individualised care in deinstitutionalised settings. The major recent policy shift in care systems is the introduction of self-directed support and personal budget schemes (Needham, 2011; Manthorpe et al., 2015).
This shift is driven by three key major catalysts. 1) The first major driving force is the ratification of the UNCPRD in Western Welfare States (Convention of the Rights of People with Disabilities, 2006). States which endorse the UNCRPD demonstrate the recognition of the rights of people with disabilities and take steps “to facilitate their full integration and participation in society" (ECCL, 2016, p. 18). This means that states must take effective and appropriate measures to contribute to social justice in general and to enable people with disabilities to exercise their rights. The provision of personalised care by means of personal budgets thus can serve as an example of how governments and society as a whole try to find new ways to foster human development and social inclusion for all. 2) A second factor in the formation of the personalisation-policy-agenda are the campaigns of the disability movements (Morris, 2006) focussing on active citizenship (see Oskarsdottir, 2007). These campaigns are based on the politics of disability rights and argue for an increased choice and control as essential elements for self-determination (Duffy, 2003; Shakespeare, 2006). This puts the creation and elaboration of choice and control and the centralisation of the notion of 'autonomy' at the centre of the care and support agenda (Baxter & Glendinning, 2011; Boyle, 2004; Lymbery, 2012; Needham, 2013; Kendall & Cameron, 2014). 3) Although these personal budget schemes create apparent opportunities to give more input into decisions about health and social care services (Baxter & Glendinning, 2011), a developed market for care provision is an essential element to make real use of these opportunities (Brooks, Mitchell & Glendinning, 2017). Thus, the third foundation of these policies is the creation of a 'care market' in which people can select the appropriate care that should meet individual quality requirements (van den Berg & Hassink, 2008; Arntz & Thomsen, 2011).
These three pillars of personal budget policies are characterized by a strained relationship. According to the existing body of research, personal budget care practices are characterised by an ascending pursuit of efficiency with emerging pressure on the accountability relationships of frontline workers and -possible- direct payments recipients (Ellis, 2007; Caldwell, 2007; Doty, et al. 2010; Brooks, et al. 2015). In addition, the need for adequate support for those who receive a personal budget to benefit from these systems has been a constant theme in research (Spandler, 2004; Arksey & Baxter, 2012). This leads to a context in which accountability for the allocation of resources takes precedence over the meaning of their use. In this vein, Bondi (2005) states that these policy-reforms provide an illusion of consumer-citizens who fulfil their desires through market opportunities. And although these policy reforms are rooted in the UNCRPD, with the potential to consider disability as an aspect of social diversity and therefore rights can be applied to realise true equality (Harpur, 2012), several researchers have uncovered that this shift towards a more individually controlled service provision leads to further isolation of traditional service users (Spandler, 2004; Baxter & Glendinning, 2011). This could result in a widening gap in the possibilities for meaningful care between people who are considered to be capable of managing a personal budget and those who are denied entry to the system because they are perceived as a risk for the efficiency of the system.
This contribution draws on a qualitative analysis of 31 semi-structured interviews with frontline workers in personal budget schemes in England, The Netherlands and Germany. In this article, we further explore the grips that support frontline workers to be able to provide care that people have reason to value.
A Capabilities Approach offers a valuable framework to analyse and shed a light on the just character in practice (Sen, 2009; Nussbaum, 2009; 2011). The approach is about not only giving entitlements on rights, but advocates for changing the environment into a supportive setting in order to help people realize their rights. The capabilities approach provides a framework in which social, cultural, political and economic constraints that affect or limit wellbeing can be identified. Within this regard, policies on personal budgets can be analysed beyond their instrumental objective, since this view allows us to understand and recognize the full range of factors that impact this personalization of care for those affected by these policies.
The central question of this contribution concerns the ways in which frontline workers can be conversion factors in the search for care that people have reason to value, within a policy with various principles and objectives that are difficult to reconcile. We will shed a light on the elements that are of decisive importance for the ways in which professionals work towards a fixed and pre-formulated functioning or support the possibility to create capabilities. This research shows that frontline workers’ informational basis of judgment of justice (Sen, 1990) is strongly influenced by the predominance of efficiency, control reflexes due to uncertainty and excessive accountability of expenditure towards public opinion. The frontline-workers in our research see merit in the implementation of a ‘two-tier system’ as a coping-mechanism with the freedoms and uncertainties related to the translation of the policy into practice. Hereby, personal budgets are seen as a possible realisation of a desired functioning for a group of people, namely being an independent consumer. Rather than a capability-promoting practice to enable all people to lead a life that they consider valuable.