پل زدن بین شکاف اشتغال و مراقبت های اجتماعی برای افراد مبتلا به ناتوانی های یادگیری : هماهنگی محلی و فاصله بین شمول اجتماعی

This paper identifies the growing gap between the spheres of paid employment and social care for people with learning disabilities. Social inclusion and independence remain closely associated with paid employment; social exclusion and dependency with receipt of care. The paper argues that, as employability and supported employment programmes increasingly select only the most able, and social care is ever more restricted to those in most need, an expanding number of people with learning disabilities are occupying a third or in-between sphere where the opportunities for work or care are limited. The paper draws on research undertaken for Scottish Government and interviews with policy makers and practitioners at national and local scales. The paper presents a critique of the array of employment programmes, arguing that their narrow and outcome-focused approach excludes most people with learning disabilities from opportunities for employment. ‘Local Area Co-ordinators’ present in many areas in Scotland provide personal support and ‘brokerage’ to facilitate access to, in some cases, employment and, perhaps more importantly, to other ‘work’ experiences (including voluntary work) and community capacity building. The ‘progressive localist’ network building work of Local Area Co-ordinators can potentially bridge the gap between the spheres of employment and social care, and in doing so contest the deterministic relation between social inclusion and paid employment.

In recent years, Western neo-liberal governments have sought to end the supposed financial and social dependency of disabled people on the welfare state, through constraints on benefit entitlement and initiatives to further access to paid employment (Lindsay and Houston, 2011 and Roulstone and Prideaux, 2012). Paid work has become the key marker of gaining independence and securing ‘social inclusion’ (Hall, 2004); yet the labour market remains a precarious and exclusionary space for many disabled people, and many remain in need of substantial care and support (Roulstone and Barnes, 2005). People with learning disabilities (PwLD) are in a particularly complex and challenging position with regard to employment and social care. Poor educational qualifications, low expectations of families and carers, and an aversion amongst many employers to mental impairment, have meant very few are in paid work, and for those that are the jobs are commonly of low status (Hall, 2004). Despite this, UK and Scottish learning disability policy cites paid employment as central to a ‘normal’ life (Department of Health, 2001, Department of Health, 2011, Scottish Executive, 2000 and Scottish Executive, 2003). Segregated spaces of employment, including sheltered workshops, are closing; improving individuals ‘employability’ for full-time paid work within mainstream employment contexts is now favoured. At the same time, eligibility criteria to access a range of care-related funding are being tightened (Roulstone and Prideaux, 2012). This paper reflects on the increasingly dual spheres of paid employment and social care for PwLD, through an examination of employability and supported employment programmes in Scotland. The paper argues that these programmes construct opportunities for only a small number of people, those (perceived to be) capable of entering full-time (defined as over 16 h) paid work in mainstream ‘open’ employment; in a separate sphere those deemed to be in greatest need receive social care support. However, the paper further argues that there is a growing largely unrecognised third sphere of PwLD, unable to benefit from employment initiatives yet judged able enough not to be eligible for social care, and presently encouraged to seek support from resources within local communities. The still dominant rhetoric of social exclusion/inclusion is characterised by the nature of an individual’s or social group’s engagement with the competitive economy, specifically paid employment, bluntly cleaving society into those ‘inside’ who are working and those ‘outside’ who are not (Levitas, 1998). Cameron and Palan (2005) characterise this binary as two ‘distinct socio-economic spaces, characterised by different socio-economic velocities’ (15), with the excluded unable to match the work and consumption ‘pace’ of the included. Those in the socio-economic ‘slow lane’, not in employment and often ‘far from’ the labour market, are, in this binary imagining, considered to be in need of social care and protection (Department for Work and Pensions, 2011). The paper argues that this constructed division between the worlds of employment and social care – neatly captured by the New Labour Government phrase ‘Work for those that can, security for those that cannot’ (Hyde et al., 1999) – is particularly stark for PwLD. For the minority, paid employment, perhaps through supported employment, is possible; for the majority, many who have aspirations to work, there are few options, with most remaining dependent on a shrinking social care sector. The paper argues that this dominant construction of two spheres presents: Firstly, a very narrow (and for many impossible) imagining of ‘work’ as full-time paid employment, assuming a work readiness and ‘sturdiness’ amongst those PwLD going into work, and an inability to be involved and make a work-based contribution amongst those seen as ‘legitimately’ not expected to work (Roulstone and Prideaux, 2012). Secondly, an orthodox understanding of ‘care’ as dependency and security for people who are unable to be properly present in and make a contribution to society (Conradson, 2003). The paper further argues that it is in the expanding third sphere, of those neither in paid employment nor ‘deserving’ of social care, that there are both financial and practical challenges for PwLD and their families, and opportunities for imagining a space of activity and hope in-between the binary division of employment and care. Within local areas, in social networks of PwLD, their families and supporters, organisations and agencies, and the wider public, other ways of being engaged with, and included within, society can possibly be generated. For example, opportunities to experience and gain from ‘work’ more broadly conceived, including unpaid and voluntary employment (Gibson-Graham, 2006). The paper examines how ‘Local Area Co-ordination’ – a network of community-based independent advisers in Scotland – can possibly provide the support, guidance and ‘brokerage’ for those many PwLD in this third sphere, through local scale network and social capital building. This Scottish initiative reflects a long-standing desire for a ‘whole system’ approach to social care provision for disabled people, drawing on the resources and services within the wider local community to respond to the ambitions for choice and opportunities amongst many more disabled people in a context of reduced funding (Department of Health, 2010). The paper argues that, whilst such an approach can be critiqued for ‘externalising’ the risks and responsibilities of social care to individuals and families (Roulstone and Prideaux, 2012, p. 112), a more positive ‘progressively localist’ interpretation can perhaps be developed, focused on the place-specific interrelationships and networks present within local communities (Featherstone et al., 2012). Local Area Co-ordinators, the paper argues, through building social relations, trust and knowledge with PwLD, can re-vision ‘work’ as multiple forms of contributions within local communities, and so begin to challenge the deterministic relationship between gaining paid employment and securing social inclusion (Levitas, 1998), in turn building a broader sense of gaining attachment and ‘belonging’ to others and to local spaces (Mee and Wright, 2009). In addition, the facilitating and brokering actions of Local Area Co-ordinators can shift the emphasis of care from dependence and protection towards assistance and support to enable PwLD and others to form the relationships and be in the spaces they wish to be (which for some may mean employment). Geographers of care have argued for ‘care’ to be considered as a relational process, based on interdependent networked relationships between individuals, professional carers, families and organisations (Power, 2008 and Hall, 2011). The paper draws on in-depth interviews with key social care policy makers and practitioners at national and local scales in Scotland, part of data gathered for a research project commissioned by the Scottish Government Health and Social Care Directorate and the Scottish Consortium for Learning Disability.2 The research formed part of a wider programme of research and policy development within Scottish Government to support the introduction of personalised or ‘self-directed’ care support for disabled and older people (Ridley et al., 2005 and Homer and Gilder, 2008). The research took place as the ‘National Strategy for Self-Directed Support’ (Scottish Government, 2010a) was being published and the accompanying ‘Social Care (Self-Directed Support) Bill’ (Scottish Government, 2011a) was being developed; as such, the research was very much part of this rapidly changing policy landscape, and was reflective of and used to inform these documents and legislation. In many ways the research was fortunately timed, as we were able to witness ‘policy in the making’; in other ways, it presented difficulties for interpretation, as the respondents were interviewed in an ever-changing policy context. National scale interviews – with Scottish Government Health and Social Care (2) and Employability, Skills and Lifelong Learning Directorates; Skills Development Scotland; Job Centre Plus Office for Scotland; In Control Scotland; Shaw Trust (a third sector employability agency); and Convention of Scottish Local Authorities (COSLA) – focused on their knowledge of self-directed support, the development and potential of the policy and practice of such support, the position of PwLD within employment (and employment programmes), and the role of self-directed support in facilitating access to employment. Local scale interviews – with local authority social workers (2) and employability staff (4); JobCentre Plus Employability Advisers (2); supported employment organisation staff (3); an NHS occupational therapist (1); a care support centre adviser (1); local further education college (1); and Local Area Co-ordinators (5) – took place in three local authority areas (named here as ‘East’, ‘West’ and ‘Central’ Scotland), with the majority of data gathered in the ‘East Scotland’ authority; these interviews focused on similar themes to the national scale interviews. All interviews were fully transcribed and thematically coded, using ‘in vivo’ and ‘a priori’ codes. It is important to state that the paper is concerned with the development of policy and practice, and to acknowledge the absence of the voices of PwLD in this changing environment of employment and care. This clearly gives the paper a particular tone, and places on it distinct limitations in terms of drawing conclusions. The paper is in three main sections. First, we examine how the dominant welfare-based constructions of ‘employment’ and ‘care’ sort PwLD into those who are ‘able’ to work and those in need of care. Second, the limited opportunities for PwLD in employability and supported employment programmes in Scotland are evidenced, drawing on interviews with policy makers. Third, the possibilities offered by Local Area Co-ordination in both supporting the increasing number of people outside employment and not entitled to social care, and creating opportunities to be active and to contribute within local communities are examined. The Conclusion argues that the increasing number of PwLD in neither employment nor care demands a dismantling of the social exclusion/inclusion binary, and the shaping of new localist forms of belonging for PwLD. The paper contributes to a small but growing critical geographical literature on learning disability, set within the established sub-discipline of disability geography (Chouinard et al., 2010). Responding to a call by Hall and Kearns (2001) to ‘make space’ for the relatively invisible social geographies of PwLD, geographers have studied their ‘entangled’ experiences of social and spatial exclusion and inclusion (Hall, 2004 and Hall, 2005); their place within and relations with mainstream communities (Wiesel, 2009) and employment (Butcher and Wilton, 2008); and their networks of interdependent social and caring relations (Power, 2008 and Power, 2010). As such, whilst a relatively small population, the experiences of PwLD, and in this paper, the policy making that shapes their lives and opportunities, tells a bigger story: of the powerful marginalisation of people of mental difference in contemporary society, the imagined roles of social care and employment in achieving a ‘normal’ life, and other pathways to being part of and making a contribution to local communities and wider society (Hall, 2010).

This paper has identified a significant gap between the conceptualisation, spaces and practices of paid employment and social care for PwLD. The paper has further argued that this gap is widening as contracts for employment programmes focus on job outcomes and eligibility criteria for receipt of social care are tightened to focus on those in greatest need. An expanding population of PwLD now fills the space in-between, neither judged as able to gain employment nor deemed in need of social care support. This emerging sphere is one of everyday difficulties for many, yet also offers opportunities for reimagining the positions and contributions of PwLD within local communities and society more broadly. The dominant conceptualisation of two distinct spaces or trajectories (Cameron and Palan, 2005), with those in employment ‘inside’ or included and those not in work ‘outside’ or excluded (Levitas, 1998), does not provide an adequate interpretation of the emergent in-between space of activity. The axis of social inclusion and exclusion that frames UK and Scottish Government policy turns around the binary of ‘work for those who can, security for those that cannot’ (Hyde et al., 1999); evidence from policy makers presented in the paper suggests that paid employment (or a place on an employability or supported employment programme) is understood as the only proper (financial and moral) route out of dependent and excluded positions for PwLD (and many others). The simple and politically enticing binary of social exclusion/inclusion begins to fracture as an increasing number of people are unable to achieve either status: of ‘work’ or the ‘security’ of care. The expanding population of PwLD and others in the in-between space of family and community networks demands a reconceptualisation of what it is to be ‘included’. The paper suggests that the local scale ‘brokerage’ role of Local Area Co-ordinators may be able to map out a path for many PwLD to become part of and feel valued within their communities. Crucially, LACs use the potential of the liminality of the in-between space – where people are not clearly identified as either inside or outside – to imagine pragmatic and hopeful ways for people to be active and contribute. Indeed, by seeking out people who are not currently known to, and assessed by, local authority social care, but are known of within the local area, LACs are also destabilising the dominant classifications of learning disability – of ‘mild’, ‘moderate’ and ‘severe’ – so central to eligibility criteria for social care and welfare benefits, and dominant in deciding who is (in)capable of employment. Through co-production with individuals and families underpinned by local knowledge, LACs negotiate possible activities, spaces and relationships beyond the constraining binary of social exclusion/inclusion. PwLD have long been within locally-configured interdependent networks of families, friends, carers and supporters (Power, 2008), and have gained senses of valuing from local sites including day centres, creative arts centres, and churches (Hall, 2010). LACs can connect these networks and sites together, enhance their status and encourage their connection into local communities, and through their links with local organisations and employers (and their knowledge of financial and bureaucratic regimes), generate new possibilities for activity and contribution. Whilst some may seek and gain paid employment, the in-between space allows the possibility, within admittedly challenging social and economic contexts, for other roles – including church fellowship, sports activities, environmental work, and volunteering – to be considered of value and social importance. It is arguably the doing of these roles – involvement, embodied contact, activity – not simply being present in a community that enables PwLD to escape the confines of ‘needs assessments’ and positions of social exclusion/inclusion, and in doing so move towards positions of ‘belonging’ in local areas (Mee and Wright, 2009). Geographers have turned to the notion of ‘belonging’ as a way of conceptualising an individual’s attachment and involvement outside of the constraining binary of exclusion/inclusion. Crucially, belonging emphasises not the status gained, such as employment, but the process of ‘yearning’ and ‘doing’ to ‘become’ towards this position (even if it is never achieved) through making connections and being with others in local spaces (Probyn, 1996). LACs have the potential to do something extremely significant to enable a movement towards belonging for many PwLD: creating an expanded understanding of both ‘work’ – as activities involving physical, mental and social participation beyond the competitive economy (Gibson-Graham, 2006) – and ‘care’ – as a relational and co-produced ‘shared accomplishment’ to support an individual to be actively present and contribute (Conradson, 2003). The paper has argued that the creative work of LACs within this liminal space can possibly be cited as an example of a more progressive interpretation of the current ‘austerity localism’ agenda of UK and Scottish Governments (Featherstone et al., 2012). Through the building of local social networks and belongings amongst PwLD, their families, and local organisations and publics, in a set of mainstream and safe spaces, places can become sites of new relations between unequal groups (Massey, 2005). However, is inequality between areas an inherent part of a new localism? As noted above, LACs, and the crucial support they provide to an increasing number of people, are not present in every area in Scotland, and in some there have been attempts to close the service as funding falls (Scottish Consortium for Learning Disability, 2010b). Many PwLD and their families now rely on the somewhat fragile provision of LACs, amidst severe funding reductions (Vincent, 2010). In addition, further divisions may emerge within the learning disability population, as the most able gain more from the activities and connections facilitated by LACs; for those with greater needs nothing LACs can do will compensate for their loss of funding support. Indeed, LAC may offer a case of a veiled ‘regressive localism’ as LACs attempt to stitch together a patchwork of activity and connections to alleviate the effects of funding cuts and lack of employment opportunities for an ever increasing population within the third sphere. The policy makers at national level interviewed for the research maintain the ‘dual sphere’ discourse of employment and social care, even as employment opportunities and local care funding become ever more constrained. It is the interviews with LACs that reveal both the everyday difficulties of the lives of PwLD and their families, and the possibilities for belonging and inclusion. However, as acknowledged in the Introduction, the voices that have remained in the shadows throughout have been those of PwLD (Hall, 2004). As the number of people in the ‘third sphere’ continues to grow, further research must capture the experiences, desires and fears of those at ‘work’ and in ‘care’ in this space in-between.