Benoot, Toon Daan Bob (2017). 'Personalisation and Social Justice: an analysis from a Capability Perspective' Paper presented at the annual conference of the HDCA, Cape Town 2017.
Since the 1990’s, in modern welfare states, an evolution towards personalisation of care can be noted (e.g. Baxter, 2012). Although Needham (2011) defines personalisation as a rather ambiguous and elastic concept, it is undeniable that the core of the personalisation storyline is about giving people choice and control over their care and support (Lymbery, 2012). One important way in the realisation of the U-turn in care systems is the introduction of systems of self-directed support and personal budget schemes (Manthorpe et al., 2015).
Many systems of individual funding schemes are explicitly modeled on the UN convention on the rights of persons with disabilities, whereby Article 19 of the Convention stipulates that all persons with disabilities, regardless of the type or severity of the disability or the level of support necessary, have the right to live in the community, with choices equal to those of others (Convention on the Rights of People with Disabilities, 2006). States which endorse the UNCRPD thus demonstrate the recognition of the right of people with disabilities and take steps for their "full exercise of this right, and to facilitate their full integration and participation in society" (ECCL, 2016, p. 18). This means that Member States must take effective and appropriate measures to enable people with disabilities to exercise their rights. The Government of Flanders (the Dutch speaking part of Belgium) decided to start in 2017 with the implementation of a system of individual budgets in care to people with disabilities. This is part of a long- term vision titled as ‘Perspective 2020- [ a new support policy for disabled people]’. The Introduction of personal budgets in the landscape of care for disabled people in Flanders caused a huge system shift with a severe impact on many actors, including the government, care providers, the care user and the (newly created) market. The essence of this new policy can be summarized as a shift from a supply-driven to a demand-driven care (Perspective 2020. New Support Policy for Persons with Disabilities, 2010). The policy document introduces a welfare restructuring that is explicitly adhering to principles of citizenship, rights, inclusion and the pursuit of autonomy. Furthermore, the document refers to the United Nations’ Convention on the Rights of People with Disabilities and has been conceptualised by the Belgian ratification of the UNCRPD in 2009.
In Flanders, a model of citizenship provides the ground for the pursuit of equal rights, in which 'quality of life' and inclusive social policies are central and which emphasizes the potentials, individual skills and personal autonomy and social solidarity (Vandeurzen, 2010). The pillar for healthcare innovation in Flanders is a concept of autonomy that emerges from a commitment to full social participation of disabled citizens. Initiatives with contributions to the strengthening of the personal autonomy and agency must be further created, says Flemish Minister of Welfare, Health and Family Vandeurzen (2010). An example of such initiatives are the ‘assistance organizations’ which have the mandate to support disabled people in their use of an individual budget and offer help in the decision making process regarding the organization of their own care and support .
Such a system is developed within the rationale that the creation and elaboration of a market will contribute to the quality of care. Choice and control are, on the one hand, an objective of such policy and, on the other hand, a tool for the creation of a care market. In this vein, systems of personal budgets may contribute to the individualist idea of control and choice over a person’s own care and support as a standard and a norm. Hereby, independence is presented as a desired functioning and social workers and care services should act as conversion factors which guarantee that the personal budget can contribute to this norm. This expectation may disregard the possibility to choose the control and freedom of choice and ignore the capability to control and choose their own care. Albeit these systems are rooted in the UNCRPD, this scheme stresses the strain between a rights-based approach and principles of a market and fails to acknowledge possible alternative states of the notions autonomy and independency.
In this presentation, we present our doctoral study in which we try to explore and bring in discussion in which ways social workers and care services –as conversion factors- realize Capabilities for people with intellectual disabilities within a normative political framework of demand-driven and inclusive care. This doctoral study thus aims at exploring the black box on how social workers in care services support disabled people in realizing Capabilities in the context of personal budget schemes and hereby uncover what kind of pedagogics and practices arise in this discourse. This involves Capabilities in general, and in particular the Capability ‘control and choice over own care/ self-determination and agency’ (this Capability -as a set of possible functionings- will be further specified in this study and is not based on a previous differentiated set of capabilities). Given the distinct vulnerability of intellectual disabled people in a conditional and complex system of personal budgets, this research project focusses on the realization of Capabilities for this group with few of degrees of freedom. The emphasis on Capabilities offers the opportunity to think beyond specific functionings, goals and standards, such as the standard of autonomous citizens in the case of individual budget schemes. Within the framework of Capabilities, the emphasis lies on the ability of people to live a life they have reason to value and that this life includes the substantial choices they have. This is of essential importance hence:
1. this is a recognition of inter partes;
2. this is a recognition of the fundamental inequality and vulnerability in having and making choices.
In this light, the Capabilities Approach provides a nuanced framework for analyzing and realizing the rights of disabled people.