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Disability & Society

ISSN: 0968-7599 (Print) 1360-0508 (Online) Journal homepage: http://www.tandfonline.com/loi/cdso20

Disabled people, choices and collective organisation: examining the potential of cooperatives in future social support Alan Roulstone & Se Kwang Hwang To cite this article: Alan Roulstone & Se Kwang Hwang (2015) Disabled people, choices and collective organisation: examining the potential of cooperatives in future social support, Disability & Society, 30:6, 849-864, DOI: 10.1080/09687599.2015.1057317 To link to this article: http://dx.doi.org/10.1080/09687599.2015.1057317

Published online: 15 Jul 2015.

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Date: 17 February 2016, At: 00:35

Disability & Society, 2015 Vol. 30, No. 6, 849–864, http://dx.doi.org/10.1080/09687599.2015.1057317

Disabled people, choices and collective organisation: examining the potential of cooperatives in future social support Alan Roulstonea* and Se Kwang Hwangb a Sociology and Social Policy, University of Leeds, Leeds, UK; bSocial Work and Communities, University of Northumbria at Newcastle, Newcastle, UK

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(Received 16 May 2014; final version received 28 May 2015) Major shifts in funding, demography, personal expectations and the rise of a global disabled people’s movement require new and creative solutions to the choices and rights agenda into the twenty-first century. Direct payments and the individual employment of personal assistants is one clear and recognised path to independent living. However, there have been some reservations about the nature, process and impact of the broader personalisation agenda more generally within which direct payments and personal budgets are located. Some commentators point to the loss of the collective impulse in personalised approaches – ideas that were central to the development of the independent living movement and its founding principles. Some countries have seen the rise of collective responses to direct payment developments. This is explicable in terms of a suspicion of individualist underpinnings of personalisation coupled with a collective vision of social life. This article is based on an exploratory study of collective approaches in the field of direct payments where choice and social solidarity are being combined. Drawing on developments in Sweden, England and Wales, the article aims to inform possible future debates about direct payments and cooperative approaches and argues that greater user-control is not inimical to enhanced collective action. Keywords: disabled people; social support; self-directed; collective life; cooperatives

Points of interest • Cooperatives involve people working together to support each other as a group. • Cooperatives bring together money, skills and help from people that want to work together. • Some disability organisations already feel like cooperatives. • This study looks at what disabled peoples’ organisations using cooperative ideas look like. • We looked at how cooperatives might have a bigger role in disabled people’s lives. Introduction and aims: cooperatives, direct payments and independent living In the United Kingdom, major policy shifts towards direct payments and personal budgets have in turn prompted an interest in alternative organisational forms in *Corresponding author. Email: [email protected] © 2015 Taylor & Francis

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delivering future social support and independent living (Fisher, Rayner, and Baines 2011; Glasby and Taylor 2006). Even mainstream governmental features of modernised social care refer to principles of partnership and personalisation, with service users and carers now in principle a key aspect of the co-production and review of the services they receive:

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Co-production has been the focus of much recent attention, within both public policy and practice. It relates to the generation of social capital – the reciprocal relationships that build trust, peer support and social activism within communities. Co-production is also being used as a way of talking about participation and community involvement in social care services in the context of personalisation. (SCIE 2012, preface)

These developments are crucial in moving social support beyond a paternalist ‘we know best’ framework which was premised on passive recipients of social ‘care’. In time, however, the official construction of independence has increasingly equated it with reduced dependence and self-reliance, reflecting a consolidation of the neoliberal vision for minimalist facilitative welfare state. For example, the recent Independence, Choice and Risk (Department of Health 2007) makes it clear that the main focus is on the ‘self-management of risk’. Despite the welcome policy objective of a user-led organisation in each locality and the announcement of a Disabled People’s User-Led Organisation innovation fund of £3 million (ODI 2011), the cash invested in English adult social care will reduce by a further 1.9% in 2014/15: a sum equivalent to £266 million (ADASS 2014). Modernised notions of social support ‘from above’, then, still revolve around the notion of a service-user taking individual control and responsibility for the core dynamics of personalised services and partnership with personal assistants (PAs). The fiercest critiques of personalisation point to a neo-liberal individualism and unsustainable contradiction between the sovereign consumer and anti-public-sector stance underpinning personalised and self-directed approaches (Ferguson 2007; West 2013). Self-directed support also means disabled people have to navigate support and employment systems in a way that is daunting for some because user control can be seen as a synonym for the self-management of risk with limited support structures (Spandler 2004). Similarly, Conaty (2014, 6) criticises more recent policy interest in co-production, noting that it could become just a passing ‘fad’ without the membership and ownership structures needed to embed and empower citizens. Indeed, the collective element of the disabled people’s movement has been less well supported in concrete policy terms, most notably with the failure by the UK government to honour the commitment of a user-led organisation in each locality (ODI 2011; SCIE 2009). Such a collective approach was of course at the heart of the development of Centres for Inclusive or Integrated Living (CILs) in the United Kingdom and the USA which emphasised user-led and peer support approaches that assume collective forms in a philosophical and a day-to-day sense (Barnes and Mercer 2006; Campbell and Oliver 1996; Charlton 1998; Dejong 1983). Collective struggles in the context of CILs have taken the forms of shared knowledge, resources, commissioning, advocacy and peer support. Different historical, ideological and cultural factors, it is clear, have helped shape the roll out and interpretation of independent living in each country context, even within the United Kingdom (Priestley et al. 2010). In the United Kingdom, cooperatives are not legally defined and the terms ‘cooperative’ and ‘mutuals’ are frequently used interchangeably (Cooperatives UK 2004). However, key to these new organisational developments is a concern with

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not-for-profit and collective organisations where resources and skills are often pooled and best epitomised in the form of cooperative social enterprises. Such debates invest cooperatives with a potentially important role, especially in marginalised communities where community resource and identity may have been by-passed by neo-liberal economic and policy developments. These resources can also be drawn on in a way that counters market and mainstream charitable drivers which are not based on shared ownership and control and may perpetuate paternalism (Rayner 2009). According to Atherton et al. (2012), cooperatives are businesses owned and run by and for their members, whether they are customers, employees or residents. As well as giving members an equal say and share of surpluses, cooperatives act together through cooperation and are built on an explicit community ethos. According to the International Cooperative Alliance Statement of Cooperative Identity, a cooperative is: An autonomous association of persons united voluntarily to meet their common economic, social, and cultural needs and aspirations through a jointly owned and democratically controlled enterprise. (International Cooperative Alliance 2012, 3)

There is therefore scope to support formal recognition of cooperative legal forms to underpin user control and empowerment. Evidence suggests that cooperatives (e.g. worker cooperatives, credit unions), through member ownership and control, may contribute directly to the eradication of poverty through the economic and social progress of their members and employees and indirectly through supporting social cohesion (Bailey 2012; Birchall and Simmons 2009). In this sense, cooperatives can dissolve the artificial policy structures that separate work, welfare and poverty and view social and economic capital in a much more holistic way. Although debates around independent living and cooperatives are getting a small foothold in the UK jurisdictions, many of the earliest links between independent living and cooperatives were made in North America and Scandinavia. For example, cooperatives in various regions of Canada serve their members by providing not-for-profit consumer-directed support services which create social and economic benefits for disabled people as producers and consumers of support (Bidonde and Leviten-Reid 2011; Lemon and Lemon 2004). Evidence suggests that disabled people’s involvement in cooperatives has positive benefits such as integration into the community, having more opportunities for employment and education through skills development, improving health status and increasing self-confidence and perceived quality of life (Jans 2007; Sutherland and Beachy 2004). Rassmussen and Krogh (2000), for example, point to the value of cooperative forms which embody the four elements of empowering organisations: access to information, inclusion and participation, accountability, and local organisation. In the Nordic countries, for example, cooperatives are a well-established organisational form that is common in a whole array of sectors of which social support is simply one. However, the disabled people’s movement in Sweden, Norway and Finland has been material in forging policy support and local and national government commitment to supporting cooperatives. In the context of England, cooperatives remain unusual, although they share with Nordic countries the fact that they are often a response to frustration with local services, commissioning and lack of user voice. In the UK context, for example, Wales has promoted debates on collective social support which sit within broader ideological discussions of devolved administrations as alternatives to neo-liberal individualism (Disability Wales 2015; Welsh Government 2012). In contrast to the post-materialist emphasis of new social

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movements, cooperatives and the cooperative movement were initially premised on economic concerns. Here, however, economic, social and community issues were closely interwoven while, in contrast to labour struggles, production and consumption were both central planks of a progressive society in a cooperative movement (Webb 1899). This goes some way to countering critics of old social movements as bound up with masculinist economic hegemony (Boston 1980), while affording new social movement’s economic, community and solidaristic goals. For example, the pooling of purchasing power was a core principle of the Rochdale Cooperative Pioneers which was the first successful modern type of cooperative in 1844; they quickly realised that such pooled resource can help to stimulate markets, create service diversity and foster social inclusion (Fairbairn 1994). More recently, cooperatives in the social support sector have worked to better shape market response, while larger cooperatives encouraged new providers into a locality. The Open Public Services: White Paper (Cabinet office 2011), one of the few ‘from above’ cooperative policy developments in this arena, pointed out that cooperatives or mutuals can play an important role in the future delivery of public services. In the Localism Act 2011, the Department for Communities and Local Government has led on mechanisms for delivering local authority services through cooperatives (UK Government 2011). Fisher, Rayner, and Baines (2011), based on a study of two social care cooperatives in England, found evidence that cooperatives developed service innovations in personalised support grounded in local knowledge and the needs of service users. They reported that cooperatives provided benefits over and above delivering a social care service: social capital and building strong networks, empowerment and involvement adopted by the cooperative values, supporting employee and member recruitment and training. However, Fisher, Rayner, and Baines (2011) also found that the market for personalised services was underdeveloped and cooperatives were not well understood by gatekeepers to social care and health services. Longstanding commissioning processes (e.g. preferred provider lists, block contracts) were a significant barrier for new cooperatives entering the market despite the rhetoric of personalisation. Cooperatives and social support What forms, then, do current cooperative ventures take in the arena of social support? Co-operatives UK (2004, cited in Glasby and Taylor 2006) proposed three cooperative models of direct payments. Firstly, a service user cooperative: in this arrangement, the cooperative may contract with self-employed PAs or itself directly employ support staff. Service users would join the cooperative as they might join a community organisation or club and have the right to select their own support worker from those on offer by the cooperative, recruit a PA and introduce a worker of their choice to the cooperative. A second model is that of a multi-stakeholder cooperative with a membership of service users, staff and community organisations: service users and their assistants would be members. A third model is one where services are provided to direct payments recipients on a contracted basis from an employee-owned cooperative home support provider. Service users would agree to the support provided by the cooperative and would negotiate the practical arrangements themselves. The support worker and the service user would be free to negotiate changes to these arrangements within the agreed framework.

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In each model, direct payment recipients have control over the day-to-day delivery of their support but a cooperative with paid staff takes on the organisational and legal responsibilities of recruitment, regulation, employment, training and contracting. Glasby and Taylor (2006) argue that these models may be suitable for service users that find the ‘hiring and firing’ approach to direct payments difficult, and that the models could reduce the administrative complexity of managing staff and provide PAs with peer support, more secure employment and greater opportunities for career development. Recently, an alternative mutual model or cluster model of direct payments was piloted through five case studies on self-managed support aimed at establishing a multi-stakeholder cooperative based on people living in sheltered accommodation (Co-operatives UK and Department of Health 2010). The cluster model allows close relationships to be developed between users and PAs and means that when their own regular PA is unavailable service users have access to back-up from other PAs in the cluster locally whom they know and can trust. Another workable cooperative model in direct payments is to pool budgets to buy services collectively (Glasby, Glenndinning, and Littlechild 2006; Spandler 2004). Pooling direct payments takes choices and rights a step further with disabled people working together to agree joint activities and make decisions alongside others. This format makes possible the explicit coupling of personal choice and collective lives that marks out wider human social organisations which disabled people may not have equal access to (Sprott 1970). Sass and Beresford (2012) point out that pooling funds helps service users to develop and share a vision, skills, joint interests and identify additional community resources. Pooling is thus far more than simply a financial model. Having provided the context of the potential role of cooperatives in supporting choices and collective identity, the focus will now shift to an exploration of current examples of disability cooperatives in which disabled people have a membership and join in governance as elected board members. Method This article emanated from a literature/practice review and case-study interview research project carried out between April and December 2012, of cooperative forms and aspirations in England, Sweden and Wales. The study set out to map cooperative and proto-cooperative activities based on independent living principles and to map the degree of activity of cooperatives matching this definition. The study involved a comprehensive literature and practice review and typology of cooperatives supporting direct payments to establish the extent of cooperative activity in direct payment work. A number of data sources were searched, including inter alia CINAHL, Kings Fund database, Social Science Citation Index, Sociological Abstracts, Caredata, and Leeds University Disability Studies Archive. In addition, Internet-based searches of the grey literature were conducted using SIGLE. Once case studies were identified, interviews were completed with organisational leads (n = 4) and delivery personnel in each country context (n = 5) that conformed to cooperative models of direct payment support, or in one case an organisation which aimed explicitly to shift from a CIL to a cooperative provider. Interviews lasted one hour, and were based on an interview schedule derived from literature review insights and from discussions with CIL and cooperative stakeholders internationally (not providing direct payments in cooperative formats, thus avoiding any double use of participants) (n = 5). The study established that while relatively

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common in Scandinavia, in the United Kingdom there were only two multistakeholder cooperatives and no user-controlled cooperatives. Given the small number of cooperatives delivering direct payments, sampling was based on opportunity-based principles. The findings that follow are based on a case study of three country approaches to direct payment cooperatives and aim to provide a typology designed to begin to formulate further research and thinking about cooperative principles in direct payments and independent living. The case studies and wider literature review were each mindful of the literature on degrees of depth participation in the delivery of direct payments scheme. In addition to the above, the review of provision was also mindful of the importance and role of good commissioning, accessible information and responsiveness to impairment diversity in supporting cooperative working with disabled people’s organisations. As there are so few examples currently operating, the study is concerned to offer other disabled people’s organisations and their academic allies a typology of cooperative forms that might underpin choices and rights into the twenty-first century. The following aims to present disability cooperatives in terms of differing degrees of established cooperative forms – from a well-established cooperative infrastructure in Stockholm Sweden, to more recently established cooperatives in the English context, to an aspirant organisation currently a CIL, but wanting to become a cooperative in Wales. The study also aims to map the cooperatives studied on to the established typology of cooperatives – for example, service user, multi-stakeholder cooperatives – and to situate these in the broader policy context. The role and potential for cooperative approaches and direct payments STIL (Sweden): an established service user model of cooperatives in independent living Sweden has long supported cooperative organisations in a variety of provider sectors including agriculture, construction, horticulture and social services (Lorendahl 1996; Lund 2012; Pestoff 2009). Cooperatives in this context have been based on statutory, third-sector and user-led platforms which reflect the complexity of funding streams for social support. Over time, however, local public authorities have handed over funding and control in many parts of Sweden. STIL, the Stockholm Cooperative for Independent Living, a service user-run personal assistance cooperative, has its roots in the wider global Disabled People’s Movement, as its founder and director points out: In 1984 I gathered a group of disabled persons who needed personal assistance services to found STIL, the Stockholm Co-operative for Independent Living in order to establish our very own services. The group was inspired by the principles of Independent Living: self-determination and the idea that ‘“we are the experts!”’ In 1987 we managed to overcome massive resistance from some political parties, the labour unions, traditional service providers and the established disability organizations and started operations of our co-operative, first as a pilot project, and since 1989 on a permanent basis. Although Sweden is a wealthy country, disabled people felt very isolated in their daily lives, however they used their available resource. (Director)

The origins of STIL lay in a small group of disabled people feeling unhappy with the quality of their social ‘care’ support and a rejection of paternalism that had underpinned this support. Despite the high investment and decommodified positioning of Swedish social policy (Esping-Anderson 1990, 1999), Swedish society

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viewed disability as synonymous with care and protection. However, unlike other northern European welfare states, Swedish civil society is more fully underpinned by notions of citizen membership and the value of popular movements (Stryjan and Wijkström 1996). In this context and with the raised awareness of the international Disabled People’s Movement, STIL was created and managed by disabled people to provide personal assistance to its members. The cooperative introduced concepts of assistance that were largely new to Swedish disability politics and the Swedish welfare state at the time. These new concepts were self-determination, selfrepresentation through organisations run and controlled by persons with disabilities, de-medicalisation, de-professionalisation, deinstitutionalisation and challenging discrimination: At STIL, disabled cooperative members pool their state insurance funds for PA services in the form of direct payments. We felt that together we could bring about change by having greater purchasing power, to enhance the quality of support disabled people received as we had greater control over our personal assistants as many of us had felt that we had existed for our carers before this point and we wanted to be in the driving seat as we felt not only that we knew about our own needs, but that we were the consumer-all other markets seemed to be responsive to that, but as we received state funded support the assumption was that we would be happy with what was offered. But we formed together to directly counter that view and our cooperative organisation embodies our determination to take control and to challenge the idea that state payments equal dependency. (Director)

At STIL, the cooperative hires PAs, who are supervised by the individual members who use their services. PA services are provided wherever they are needed, including the workplace. Existing members train new cooperative members in how to manage their PA services, and ongoing peer support helps members solve any problems to become even better managers of their own PA services. In organisational terms, STIL is based on a cooperative ownership model where disabled people invest their resource and part own the cooperative; they have a vested interest as cooperative co-owners in making it responsive and successful. Disabled people opt to belong to STIL, have to be elected on to its board and agree to a core training scheme which conveys STIL’s operating principles. Board membership and control are managed by elections and democratic principles. The allowing of both service and political roles for independent living organisations in Sweden helps keep the independent living movement as a force in motion. The director points out how the cooperative works: The co-operative charges a certain price per hour of services. The local government or the national social insurance pays each member a monthly amount that covers the cost of the numbers of hours that he or she needs. The funds are paid to the individual’s subaccount in STIL. Thus, each member has a budget that s/he has to administer. The funds may be used for personal assistance only and have to be accounted for. The budget covers assistants’ wages including compensation for unsocial hours, social insurance (avoiding the grey economy), STIL’s administrative costs as well as the user’s expenses for accompanying assistants. (Director)

Access thresholds for entering the cooperative are simply that disabled people are entitled to a minimum level (normally >20 hours support per week) of direct payment cash transfer from the Swedish authorities. Since 2000 there has been growing competition from the for-profit sector and this remains a challenge for STIL. At the time of writing there are 19,000 disabled people using direct payments in Sweden

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and they employ 80,000 PAs. Currently about 60% of STIL members self-direct their PA, whilst the remainder use family or brokered direct payment options. The size of STIL affords economies of scale and scope to compete with potential large for-profit competitors. As the project director notes, the development of STIL was not without challenges:

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Well, the funding authorities were very nervous about the transfer of individual’s money to an organisation like STIL. They showed some reluctance to allow this at first. You know the idea that resources go towards collective as well as individual endeavours was a challenge as was a growing organisation of instead of for disabled people. It made waves at a number of levels, but over time we convinced the authorities that we could control our own lives and that the financial side would not be abused. (Director)

Having looked at a country context where an elective affinity was evident between the international Disabled People’s Movement, membership organisations influencing policy enactment and wider comprehension of cooperatives, we now turn to a very different context, that of England. England: the unlikely growth of cooperatives for independent living As noted above, the fostering of cooperatives and wider social enterprises has been a minority concern in English social support. National efforts at cooperative and community-owned policy have seen small-scale activity in the fields of housing and energy sectors (Kemp 1995; Walker 2008). The decision to support user-led organisations in each English locality has not only had limited impact, but these important developments are not aimed at placing ownership in the economic sense in the hands of local organisations. The long-stay institutions in the wider United Kingdom and the nature of charitable constructions of disability as a vulnerable dependency provide unpropitious contexts for collective formations. However, over time local authorities have identified not-for-profit organisations as a counter to mainstream economic dynamics and engrained social exclusion. The shift towards personalisation, co-production and direct payments has in theory been underpinned by notions of ‘choices and rights’ familiar to the Disabled People’s Movement. The discussion above makes clear that choice-making can be seen to equate to individualism in some formulations of direct payment use. However, this study found evidence that a more progressive interpretation of choice-making was embraced by some organisations, alongside frustration at the limited pace of self-determination and collective identities. In this context a small number of organisations have developed to link cooperatives and direct payment use. RUILS is an independent, service-user co-funded cooperative in the south of England that is run and directed by service users and supported by wider family and community networks. RUILS responded to the development of direct payments and became a peer support group for users of direct payments. Over 50% of RUIL’s management committee are disabled service users. ‘Stepping on Out’ is a spin-off company established by RUILS which uses pooled direct payments to part-fund a card and stationery-making company (social enterprise). The company is user led and owned, but is underwritten by local authority support. In so doing the company made possible more creative living options, as the organisation lead notes:

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We found that despite the rhetoric of personalisation, service options were really limited and we didn’t see any particularly novel forms of commissioning or new markets opening up. Many of the people with learning difficulties, even those getting the larger packages of support felt very isolated in the daily lives. Money was often used for care or recreation alone. When you share your skills, interests, resources or your direct payments money then you are engaged in pooling your assets. By putting some of your resources together with other people you can not only enjoy spending time with others who enjoy similar activities to you, but can make better use of your money. For example, paying one personal assistant to support and organise a group activity can be more cost effective. RUILS developed the scheme after a period of real consultation with service users with learning disabilities who wanted to be able to use their direct payments beyond a ‘social care model’. (Service Director)

The decision to set up a card and stationery company was supported and part funded by the local authority whilst being co-funded by service user direct payments. Of note, the company did not start out to be a cooperative, but to reflect the zeitgeist of ‘real pay for real work’ (Lawlor and Perkins 2009). The movement to a cooperative reflected the felt need to pay service users for their efforts and to move away from the perception of work as a form of distraction activity or sheltering from the mainstream (Spear 2002). A key part of the ‘Stepping on Out’ project was to educate social workers to better grasp collective approaches to using or supporting direct payments. The local authority response was mixed at first. Senior social work staff seemed to get the idea of both pooling direct payments and cooperatives, while some frontline social workers were very threatened by the idea – its novelty and the transfer of power. Another vision of cooperative social support is offered by ‘Caring Support’, a multi-stakeholder (cluster model) cooperative also based in England. As with the cooperatives above, the organisation was established following very negative experiences with traditional care services, as one co-founder notes: The local authority and private providers failed to provide the kind of high quality personal care and support that we and others needed. We felt that prior to establishing Caring Support, services were haphazard, we often didn’t get what we thought we should and the philosophy was you get what we want to give … direct payment holders did not feel there was anything to buy aside from personal care, a bit of respite support … we wanted to make the new payment arrangements work better-and we felt that having to manage your budget personally was not the same thing as personal independence … Direct payments and cooperatives together offered a degree of selfdirected control as they got older, but were finding it harder to cope with employer responsibilities, complex paperwork and had serious concerns about training and pay of personal care assistants so began to search for a more creative solution. (Co-director and service user)

Drawing on her experience as a direct payments user, the co-director saw the opportunity for a ‘new kind of service provider that could be owned and controlled by service users and their carers’. This equates neatly with the convergence of direct payments, cash transfers and cooperative solutions to challenges that require both the freedom to choose but also the right to belong and to be supported in a mutually supportive context. Caring Support’s cooperative foundations means it is owned and controlled by the service users, their primary unpaid carers, families, friends and the personal care assistants themselves. The service itself works on a cluster (multistakeholder) model based on small groups of service users (no more than 15), geographically matched. A care manager at Caring Support details the advantages of a cluster model:

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Small is beautiful, this is an antidote to having a different carer every day and from many miles away … you know we’ve been battling to get both greater control over our social care funding but still struggling with old care agency dynamics and the sense of support workers not seeming very engaged or supportive – this is partly to do with low pay relatively, but also a lack of connection with us as human beings with hopes and dreams … the cooperative hopefully gives a sense of shared endeavour. (Co-director and service user)

Caring Support elects members from each member category to sit on the Board of Trustees, who in turn manage and run the Society on behalf of its members. As with all the cooperatives in the United Kingdom, the funding context is very difficult and there were concerns that pushing funding towards a cooperative might externalise the blame if funding could not cover aspirations and running costs for the service. The reliance on local authority core funding and pooled budgets required a very new way of conceptualising enterprises – one where statutory funding remains in place, but a successful open market cooperative may eventually grow out from this funding base. Again, social work managers seemed broadly more supportive of the risks involved and the challenges of service users and support workers squaring their needs, while more junior staff registered concerns about the shared risk element of the cluster model, which proved to be unfounded Wales: aspirations towards a cooperative-based model of independent living The wider questioning of the future shape of social support in the United Kingdom is also furthered by increasingly devolved policy and delivery models in social support (Welsh Government 2007). In Wales, a major review of social services is embodied in the Social Services and Well-being (Wales) Act. The Act came into force in May 2014 and was in part a response to fears that personalisation and direct payments in England were underpinned by individualist policy goals; a critique reflecting the more statist and quasi-syndicalist settlement in Wales (Disability Wales 2009; Sullivan 2005). Debates informing the Act made this clear: We are committed to promoting high quality, responsive, citizen centred social care services. The proposed Social Services (Wales) Bill will provide us with the legislation required to take forward the change programme outlined in the Welsh Government’s white paper, ‘Sustainable Social Services for Wales: A Framework for Action’. It will also provide, for the first time, a coherent legislative framework for social services in Wales. (Welsh Government, 2012, foreword n.p.)

In Wales, citizen-directed support has emphasises the need for a mutually supportive relationship between the individual, local community, local service commissioners and providers. There has been more general reservation about the widespread rollout of individualised direct payments and personal budgets across Wales with greater evidence of collective, community histories needing to underpin social support (Welsh Government 2011). The 2014 Act and Guidance make explicit commitment to supporting cooperatives and social enterprises as a key to the future of social support in Wales. One Welsh social model organisation, Disability Wales, has been pulling together key tenets of the independent living agenda alongside the greater historical and cultural traditions of communities and collective lives. Adopting the notion of Citizen Directed Support, it notes:

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The Wales Alliance for Citizen Directed Support (WACDS), of which Disability Wales is a Council member, is developing a model that is more suited to the Welsh context. This is based on three core principles: choice and control, change and community. The model supports local innovation and provision of a range of options for service users, including Direct Payments and traditional service delivery for those who want it. The model also emphasises the importance of co-operative approaches to service provision, building social capital and community development using mechanisms such as Time Banking. (Disability Wales 2011)

New approaches for social support provision have therefore been explored to avoid the isolation noted by some critics of personalisation and to develop and innovate a local provider market through collective (or co-production) models of direct payments that can be a practical alternative to more individualised versions (Fisher, Baines, and Rayner 2012). Collective and cooperative approaches are seen to hold the potential to support direct payment use, whilst providing the context for group support and mutuality. This identification of cooperative approaches in substantiating direct payments – their potential for collective purchasing, support and fulfilled lives – is made in a key response to the Welsh Assembly Government’s review of adult support: I would specifically propose that Welsh Government should make it a requirement that in each Local Authority there would be at least one co-operative-based direct payments provider. Such co-operatives would be membership based, and open to both users and workers, in order to pool risks and rewards on a collective basis. This option should be actively promoted, and individuals’ attention positively drawn to its existence. (Drakeford 2012)

Dewis CIL is one of the authorities that have been active in trying to connect independent living with the cooperative principle in Wales. Although Dewis is not a cooperative in the strict sense and is not user owned, it is controlled by a majority of disabled people as is customary in user-led organisations and aspires to cooperative status (NCIL 2008). While respecting and valuing the classic interpretation of direct payment use, including the use of direct payments by service users to employ a number of PAs, like a number of disabled people’s organisations it acknowledges the value of mutual support, advocacy and peer mentoring in aiding disabled people taking up direct payments or changing their use. Direct payments are not seen as an end in themselves, but as the best means to achieving independence and community belonging (Welsh Government 2014). The mutual support of other disabled people is seen as equally important in making independence possible. Dewis prides itself on its independent support service. Local authorities have often delivered these supports-but we see this as holding on to the old dynamics of servicedriven ideas-even if that was not intentional, the result was the same. The continued involvement of LAs has continued to restrict the autonomy and sense of genuine independence that is possible with a service user-led approach. Such a user-led approach provides a sharing of experiences and ideas that although not a Co-operative in the sense you are talking about, is co-operative in the fullest sense of disabled people wanting to share their life experiences of direct payment options. It allows disabled people and DPOs to benchmark or ‘kitemark’ just what they mean by independence … we simply do not accept that direct payments equals independent living, while collective provision to date has been dependency creating, between individualism and collectivism and between dependency and independence sit cooperatives where shared ownership and control make for new interpretations of a good life-choices and mutuality. (Centre Director)

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As a user-led, not-for-profit organisation, Dewis positioned itself as a collective approach to fostering independent living, one which is definable in opposition to ‘for profit’ and shareholder-led approaches to disability services. Interview responses suggest that both local and national government opposition had to be contended with, both the view that direct payments were meant to follow an individual without being individualist, but also the more paternalist view that direct payments and collective entities were out of reach for some ‘severely disabled’ people. However, Dewis is clear that the not-for-profit ethos and cooperative principle are fundamental in affording the maximisation of scarce resource into the lives of disabled people: We are a not-for-profit organisation, we are notable not just for what we deliver in service terms, but that we have a moral purpose, moral underpinnings. We are a response to the combination of top down local authority traditions, and to block grants which had a ‘one size fits all’ mind-set – we fear private encroachment. The private sector is slick and will often be able to compete on price, but the emphasis is rarely on quality or sustainability. Indeed some charitable providers (names withheld) increasingly speak the language of independence and of user-controlled services. These have a hollow ring to me, for organisations that have been built on market share rather than a disability-led approach. What is interesting is if disabled service users are centrally involved in an organisation-its running and aims you get the right ethos. (Centre Manager)

At the time of writing, the first disabled people’s cooperative was opened in Wales with the support of the Welsh government. Discussion A growing number of disabled people are participating in society, increasing their independence and making decisions about their lives through participation in cooperatives. The power to participate directly in the decision-making, design and delivery of a service is perceived as essential to a cooperative philosophy (Restakis 2008, 11). In this study, there is evidence of very successful use of direct payments with cooperative organisations and principles. In particular, cooperatives provide the potential for greater control and collective dynamics, because it is cooperative principles and structures which bring together direct payment processes to offer alternative visions for social care support. This study also shows that cooperatives can offer genuine alternatives to privatisation or direct state services. In these models, direct payments holders are able to exert greater choice and purchaser power as a collective for the purposes of obtaining administrative and other support, and for shaping the pattern of local services. The cooperative models, in particular, hold enormous potential to empower disabled people and foster social inclusion and solidarity in the community. Disabled people’s organisations can also play a role in improving the well-being of disabled people through the promotion and capacitybuilding of cooperatives. However, the challenges of applying cooperative approaches to the provision of services to disabled people are in many ways reflective of the challenges in using cooperative models to provide services. The current infrastructures of disabled people’s organisations are often not well comprehended or supported by commissioners and social care managers. Disabled people are similarly unlikely to have experience of cooperatives. As a result, the development of cooperatives continues to be hampered by a lack of knowledge and understanding of the cooperative models and insufficient awareness about how cooperatives can respond to needs of specific

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groups of service users. We also need to consider how social care cooperatives might communicate with each other and with the wider cooperative movement and to what extent we can assist this process. The limited of awareness and government support for new delivery models in social support leaves developers of cooperatives scrambling to access limited sources of financing. Moreover, cooperatives are often small-scale organisations that may struggle to survive in a competitive market because of its generic difficulty of keeping the balance between profits and community interests. Cooperatives should have to navigate chronic shortages of ready and appropriately structured capital for investment and growth (Borzaga and Spear 2004). Finally, policy and legislation continues to limit the formation and growth of cooperatives, particularly in the area of the provision and delivery of social services. This study found that there remain barriers to the roll out of cooperative direct payment models that deserve attention in national and local policy directives. Cooperatives should not be regarded as an alternative to properly funded public services, but rather as complementary and additional to service users. Conclusions The above case studies and wider insights from the literature make clear that there is a powerful affinity between cooperative principles, direct payments and disabled people’s organisations. Shared ownership, user control, a concern to ameliorate provider and market-led ‘solutions’ and a belief that people are experts in their own life characterise both cooperatives and disabled people’s organisations. The case studies make clear that a range of cooperative models have been seen to work, whether service user led, cluster model or based on pooled budgets. The importance of the ideological and cultural context is also noted and helps explain the growth and forms that cooperatives are taking. The established success of cooperatives in Sweden, assuming sufficient funding and support, suggests that the United Kingdom in its widest sense could valuably engage with cooperative principles more fully. The case studies and wider literature make clear that opposition and poor funding can limit the success of cooperatives. Most opposition was what might be seen as continued paternalism or a risk-averse mind-set amongst social workers and some managers. The above article aims to prompt debate, rather than provide the final word on cooperatives and independent living. A number of questions and challenges present themselves. Firstly, how can national and local authorities better support and comprehend collective solutions to social support? Should we sustain a view that cooperatives with business aspirations should also be able to continue to assume core funding – after all, many businesses would fail without this underpinning arrangement, for example energy, agriculture and finance? Should we be squeamish about the hybrid assumptions that lie behind personal entitlement (to direct payments) and collective use (cooperative businesses)? What criteria would we use to ensure that cooperative support providers are accountable in financial terms? None of these points detracts from the examples above of cooperatives delivering social support by innovative uses of cash transfer and core funding. They point to the need to encourage greater economic diversity which might include greater cooperative use.

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Disclosure statement No potential conflict of interest was reported by the authors.

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