You are here! Negotiating liminality in place in the context of the National Disability Insurance Scheme

Abstract

The dynamics of inclusion and exclusion for people with disabilities and the places in which they live are being challenged in Australia with the transition to the National Disability Insurance Scheme. This paper reports on the experiences of a place-based and participatory action research project in regional Tasmania which sought to co-create citizenship opportunities with co-researchers living with disability. We report on our experience of negotiating this ambitious and emergent project through the uncertain and shifting terrain of the contemporary neoliberal policy and service context. We highlight the rich gains as well as the significant relational, contextual and procedural challenges of operationalising and staying true to bottom up and strengths-based community development principles. Key learnings relate to risks of creating liminal spaces for community action, about power and authority, and about the skills, resources and labour needed to unearth and mobilise individual and community strengths. We argue that there remains a significant tension between the aspirations of collective action and contemporary services and policy structures that reproduce liminality, silent positioning and place denial. This research challenges traditional disability centric notions of inclusion and place and has implications for the NDIS, for policies at risk of reproducing disabling dynamics, for service innovation and collaboration and for all social workers and others working to develop more inclusive communities.

Keywords

Community action research disability social work practice inclusion NDIS

Place-based everywhere, but you are here

A quick skim across social science disciplines suggests that ‘place-based’ approaches are fast becoming the zeitgeist of our time having the potential to deliver benefit, particularly to communities in which there is disadvantage and vulnerability. There are wide applications across socio-cultural, economic and environmental issues such as local climate change (Gultry et al., 2019), eco-social justice and equity (Marsham, 2019) and reforms to how care and support is offered in place for different groups and across urban, regional and remote localities (Bryant et al., 2018; McGovern, 2017).

If place is, as Cresswell (1996) suggests, a ‘container of social power’, then understanding how place is constructed and inhabited by, across and within communities, is a critical starting point in analysing the dynamics of citizenship, power, inclusion and exclusion. Whilst locality conceptions of place as community or neighbourhood have long been central to social work, it has been argued that the discipline has only recently begun to theorise the dynamics of place and space in everyday lives more broadly, drawing on other disciplines such as social and cultural geography which have begun a period of retheorising (Cordoba, 2016; Jeyasingham, 2018; Stanley et al., 2016). The growing cross-disciplinary focus on the practices and experiences which constitute ‘lived citizenship’ and the dynamics which shape rights, responsibilities and participation for vulnerable populations (Warming and Fanhoe, 2017) very much aligns with the interests of the research reported in this article.

Locality identity for locality action has raised ‘embodiment’ as a key idea around local social practices and dispositions (e.g. see Petteway et al., 2019) in which collective action is based on ‘consciousness’ of an issue, something akin to Marxist class consciousness or Freire’s (1997) notion of ‘conscientization’. Naturally then, proposed methods are likely to be participatory or co-designed approaches (Fagerholm et al., 2019) and to build on hidden and manifest assets, a focus on strengths rather than needs as a basis for community transformation. The distinction is critical, marking underlying differences between neo-liberal conceptions of change through the expression of individual choices versus change through collective voice, choice and action.

Power and Bartlett (2018b) argue that strengths-based engagement by active citizens and how these might be achieved in a ‘post service’ and individualised support landscape are critical questions for policy makers, services and communities themselves, especially in the disability space. When people using social support services are converted into mobile citizen consumers choosing in a competitive care market, how do voices come together to drive structural change? How do communities change and respond to support greater inclusion and citizenship? This paper details key learnings from a research translation project which sought to use a participatory and place-based research approach to consider these questions and to co-create new opportunities for civic participation with people with disabilities.

The success of Australia’s National Disability Insurance Scheme (NDIS) depends on its capacity to support social and economic inclusion; however, this study and other emergent research point to the tensions and gaps between policy rhetoric, individualised and marketised approaches, and the everyday experiences of people who have and continue to be marginalised from the very places they call home. This context, the setting for our community change project, named GT for brevity and anonymity in this paper, is described below.

Study context

The NDIS is a $22bn AU per annum disability policy which seeks to transfer greater choice and control to people with disabilities as consumers within a social insurance rather than welfare approach. Individualised planning and funding approaches aim to promote people’s capacity to participate as ‘active agents’ in their community and in a services market (Australian Government, 2016). Eligibility for a funded plan includes evidence of a permanent and significant disability (including psychosocial) which impacts activities of daily life and social and economic participation (National Disability Insurance Scheme Act, 2013: Sections 21–25). Those able to self-manage their budget have greater choice in services, whilst others, whose budget is managed for them, can choose from NDIS registered services. NDIS participants must be under 65 and an Australian citizen or holder of a Permanent Visa or a Protected Special Category Visa. Participants are provided with a funded plan based on an assessment of the ‘reasonable and necessary’ supports required to meet the objectives in their NDIS plan (National Disability Insurance Scheme Act, 2013). The NDIS has transformed the national disability services landscape and represents a major shift in the nature of power relations between the government, services, civil society and people living with disabilities (Green et al., 2018). Individualised funding and policy narratives underpinned by ideals of choice, control and personalisation are increasingly being adopted in disability policies across Europe and North America ( Fisher et al., 2010; Needham, 2011; Yeandle and Ungerson, 2007), making the Australian experience highly relevant to international debates regarding citizenship and disability.

However, the notion of consumer choice can be problematic in a complex administrative and market environment (Mladenov et al., 2015), especially in the absence of the necessary supports to navigate these systems and attention to structural barriers to choice and equity in this landscape (Clarke et al., 2007; Dodd; 2013; Ferguson, 2007). Recognising this, the NDIS adopted the Information Linkages and Capacity (ILC) building framework in 2015, a multi-million dollar tier of investment designed to support inclusion through organisational and community grants for individual, family and community capacity building initiatives. By the end of 2018, $85.9 million AU (GST ex.) had been spent on grants across Australia and more than $222 million AU was to be released in 2019 (NDIS, 2018).

Touted as a critical platform in the inclusion agenda, the ILC strategy is intended to complement the individualised funding strategy and the role of Local Area Coordinators by ensuring that all people with disabilities regardless of NDIS eligibility have access to some support and information. The initial ILC Policy Framework was revised at the end of 2018 to address critiques regarding the high volume and short-term nature of grants. The new policy aims for greater impact through a ‘more strategic, multi-year approach’ focusing on fewer projects which are ‘measurable and scalable at full Scheme’ (NDIS, 2018).¹ The new strategy targets four capacity building priority areas: individual including peer support, mentoring and other skills building; a National Information Program; economic and community participation; and a mainstream capacity building program targeting improved access to mainstream services (NDIS, 2018). With many disability-led and peer support services relying on winning ILC funding for their survival once existing funding ceases, there are concerns that much of the existing ‘glue’ in the form of lived expertise and knowledge may be lost to the community (McGarry, 2019).

The extent to which the program logic underpinning the ILC strategy will achieve its objectives in terms of sustainable community based innovation, mainstream access, and attitudinal change is yet to be evaluated. However, the nature of the grants and service orientation raise questions about its capacity to produce the community transformation envisaged or to support the collective voice of people so important for place-based approaches. Whilst research is still limited regarding impacts on sector collaboration, there are emerging concerns regarding implications for community development work. Stampoulis-Lyttle (2019) builds on Green et al.’s (2018) research during the NDIS trial phase to argue that in an environment requiring ‘measurable outputs’, the ‘invisible’ nature of cross-sectoral collaboration and community development initiatives renders this work and those who do it increasingly vulnerable.

GT, the research translation project reported in this paper, was in many ways an attempt to explore how community capacity building can occur to address some of the shortcomings of the ILC framework through a bottom-up and strengths-based approach led by people with disabilities in one locality. The regional city in which the project was based has a population of around 50,000, and ABS SEIFA² data for 2016 place it in the bottom 8 of 29 local government councils in this area of Australia having higher unemployment rates and lower average income than nationally. Census data³ suggest that 7.5% of the population compared to 5.1% across Australia require assistance with core activities suggesting higher levels of disadvantage and vulnerability. We have used the fictional name of ‘Lochville’ for the purposes of this paper in order to protect privacy of those involved.

Community capacity building in place

GT was the third in a line of research undertaken with a major provider of NDIS Local Area Co-ordinator services in regional Australia. A previous knowledge review around community capacity building had been undertaken to support the disability service provider’s strategic engagement with the ILC. At the same time, the authors had made significant links with the City Council’s Access and Policy Officer who had a work interest in ‘disability access and inclusion’ when we made our project funding application. Once the present research was funded, a later incumbent of that post provided significant support and advocacy – an essential link and resource that made GT possible. This incumbent attended the project’s Action Research Group (ARG) meetings, linked the group members into key activities and decision-making processes in the council and brought a wealth of knowledge about local networks and resources.

The unpublished knowledge review noted above (David, Ramcharan and West, 2017) characterised national and international examples in the formal and grey literature relating to disability, community and inclusion and categorised them across a number of values which shared similarities to place-based approaches: for example, collective action, asset and strengths based, sustainable, participatory and empowering, a whole of community approach, intersectionality and cross-sectoral partnership.

Moreover, all of the projects were locationally focused: within a neighbourhood locality (e.g. Keyring⁴), city (e.g. Youth mentoring in Adelaide⁵), across a council area (e.g. Making It Real⁶), across a region (Let’s get Connected) as well as within locality around cultural or health identities (e.g. ADEC Community development⁷). Of note is that many projects covered more than one of the domains or areas in which capacity could be built, whether individuals, neighbourhoods, communities or regions.

Developing the GT project methodology

One of the key challenges in the GT project was what settings to adopt. We were certainly drawn to bottom-up participatory approaches grounded in the interests of local communities but were keen to avoid tokenism (Ife, 2012; Kenny, 2011). We were cognisant of Kenny’s (2011: 15) assertions regarding the contested application and range of community development approaches, existing on a continuum between grass roots ‘radical activism’ and top down ‘ineffectual panacea’ employed to calm the ‘working class and powerless’ and exploiting a nostalgic notion of ‘community’. Our established links with the City Council had the potential to explore how well local government might engage in an agenda set by the co-researchers and the potential of this developing relationship for place-based outcomes.

Our aim was to support the project research officer and co-researchers with disabilities to bring their strengths, interests and assets to the community transformation process. Such relational models of disability (Thomas, 2007) see body, social relations and place as mutually interdependent. Linking in this way challenges traditional models of ‘place-denial’ or place neutrality in which personal everyday geographies are muted in the conceptual framework and unseen in lives framed by service cultures. Power and Bartlett (2018a) refer to this as a ‘silent positioning’, asserting that ‘place-work’ is necessary to contemporary ‘welfare’ policy that seeks to produce inclusion. A further premise of our research was that innovation can happen when both the latent and manifest assets and capabilities of those with lived experience are leveraged and mobilised in an asset-based approach (Sherwin, 2010; Verity, 2007).

The GT research translation project was a partnership application with a disability service provider and a regional city council whose majority interests lay in their access policy as outlined in their Disability Access Plan. Both organisations made significant contributions to the project, both funding and in-kind alongside major internal university funding. The project was guided by a Steering Committee composed of the university research team and key stakeholders from our partners.

GT was at inception a response to an internal university research translation tender. Lull et al. (2017: 2) provide advice on bridging the ‘know-do’ gap in collaborative approaches to knowledge generation between knowledge users and researchers that will lead to ‘co-created knowledge’. Along these lines, Drew and Boydell (2017: 142) reflect the need to think beyond traditional research agendas and dissemination in disability research.

Knowledge translation is emerging in the disability field as an important approach in ensuring that research agendas and results are led by and communicated in partnership with those with most to gain – people with disabilities, their support networks, and practitioners.

As Lull et al. (2017: 3) argue in relation to community-based participatory research (CBPR) methodology it ‘[therefore] enables researchers to use a wide variety of research methods … ’, and this was a feature of our translation methodology.

The result was that GT would encompass the now well-worn action research quadrumvirate of plan, act, observe and reflect (Kemmis and McTaggart, 2005) to work across a number of project stages within the aspirational 18-month project period. Action research cycle 1 involved the formation of the Action Research Group (ARG) of people with disabilities and partner representatives; cycle 2 involved community consultation and asset mapping; cycle 3 the creation of prototypes and cycle 4 testing the prototypes.

However, the adopted methodologies within these project stages would be designed and led by the team of co-researchers recruited to form the ARG. This process would be supported by the project research officer and be guided by co-design principles. The role of the Chief Investigators was to support the ARG and emergent approaches as they developed, bringing our research expertise and to support people with disability recruited to pursue their interests, based in their lived experience and understanding of their local community strengths, priorities, and needs. The project research officer, located in the city, was to facilitate and guide the action research process and group, to provide the ‘architecture of involvement’ which would optimise the co-researchers’ input (Di Lorito et al., 2018: 683). The Chief Investigators provided project and research supervision to the project research officer, albeit from a geographical distance in another state. This aspect was far from ideal; however, was a function of the place-based methodology.

The story of our emergent methodology is therefore in many ways the story of the GT project, a summary of which follows. As the Social Care Institute of Excellence (SCIE, 2017: 3) argue:

Asset-based models cannot be imposed from above, and there is no one-size-fits all approach. Such models, by their very nature, grow out of communities, and it is important that they are given the space and support to develop and succeed.

Many of the GT activities mirror these principles and SCIE’s 2017 approach (not known to us at the time) which was based on five processes, the first three of which are used to structure our account in what follows: reframing the narrative: identifying assets and, connecting, mobilising and growing assets.

The narrative journey of GT

Reframing the narrative – Action research cycle 1

Once employed in November 2017, the project research officer, third author in this paper, was able to start action research cycle 1, the process of recruiting members for the ARG. The group we envisaged would be key to leading this project, i.e. reframing a local narrative around community inclusion and citizenship. Among the recruitment criteria, ARG members were to be diverse as a group (e.g. age, gender, cultural background), engaged (or interested in becoming engaged) in the ongoing development of the city and able to fulfil ARG responsibilities.

Easy English flyers advertising the project and the expression of interest process were supplemented with visits to advocacy groups, community organisations and disability service providers which had the effect of extending the project networks whilst recruiting and advertising the project. Nine community members who identified as having a disability or as a family carer applied, and seven were selected (including one family carer) following individual interviews involving specific questions related to applicants’ Lochville networks and vision. In response to the question, ‘What is your dream for Lochville?’, the project research officer’s diary note on these responses was revealing. She noted that:

People who have come through are speaking about ideas for Lochville that are not disability specific. Things like fixing the skate park, enlarging the bus shelters, that kind of thing. Funnily enough, the only person to mention access (physical) so far has been someone who doesn’t have a physical disability.

All applicants said they wanted to be involved because they had an interest in helping others, and improving the local community. Other reasons were expressed as follows: ‘I know what it is like to feel lonely’ and, a wish to ‘meet different people’. During this process, it came to our attention that some organisations could not support people in the project outside of their billable hours (i.e. what had been approved in the person’s NDIS plan). The effect of this was that not all people who may have applied to be on the ARG were able to do so due to lack of funded or informal supports. This is problematic, as such restrictions limit participation, the ‘spontaneity’ of choice and the ‘adaptability’ required to make life generative and not routine.

In relation to payment, applicants were advised that they would be paid a casual academic research assistant rate of $45AU per hour for their project time. Interestingly, some local organisations felt this was too high and not something they would be able to match. In this, we were experiencing one of the normative and yet unseen aspects of the differential recognition for the work of people with disability. It might be argued that under present systemic arrangements and policy settings, organisations pay ‘what they can’ rather than what they see as ‘just and deserved’.

Six people with disability and one family carer were ultimately recruited to form the ARG. The group included two women and four men. All but two young men were in their 40s or older and there was limited cultural diversity with members having predominantly Anglo-Celtic backgrounds and one member identifying as Aboriginal. The lack of cultural mix might be explained as a reflection of the local demographics, but we were also advised by a migrant resource service that it would be more difficult to engage people from culturally and linguistically diverse backgrounds including newly arrived migrants. This was due to their complex circumstances and the range of barriers to engaging in a long-term ongoing research project. One person and a family carer were later to drop out due to life circumstances. The final working ARG consisted of five people who brought their experience of disability and community to the group, the Project research officer, the City Council’s Positive Ageing, Access and Youth Development Officer and a community capacity builder from the partner disability service provider.

The first two ARG meetings in February and March 2017 focused on group formation and rules. The subsequent meetings saw the narrative shifting to how the group could influence and shape project activities. The ARG identified the need to develop an ‘asset map’ of people, environments (buildings, spaces and places) and services. The group also shared their ‘dreams for Lochville’ and discussed the ‘research’ part of the project. The Chief Investigators had stated in the funding application that there would be consultations with people with disability and family carers, ‘visits to day services, deliberative focus groups, discussion with local area co-ordinators …, a questionnaire – but [this] will be decided on the basis of ARG group discussion’. The funding application had assumed a ‘disability focus’ where, by testing prototypes with people with disability might lead to increase community participation. However, the ARG reset these arrangements. The ARG felt they wanted to talk with the city public as well as people with disability. Reports back after two ARG meetings indicate that some members were already, inter alia asking people about their ‘dreams for Lochville’, making contacts for example for a local market stall (which was used later), talking with council about the need for more information, about an online information hub or a person as a ‘living directory’. There were also suggestions regarding consultation with community houses and linking to business networks where one person had contacts.

Identifying assets and consultation – Action research cycle 2

After discussion with the Chief Investigators, the plan for the community consultation was three-fold. The ARG members consulted with the public across four locations: a shopping centre outside of city central; in a market; in the central city shopping Mall and at the city library. In all, 106 entries were made into a database including responses to ‘what do you like best in your suburb?’ and ‘how would you make it better for people who live there?’ Significant work was undertaken to train ARG members and to make them safe in this role. This included identity cards, training around approaching the public and about always being visible with location known.

Over a period of five weeks, five focus groups were undertaken in different areas of the city, of which four took place after networking with disability services and wider locality groups. A total of 22 people attended the focus groups. These included 13 people who identified as people with disability; four ‘community members’; four service workers and one person from a voluntary organisation. Five observers/support workers and three ARG members also attended and contributed. Although each group was from a different location and might bring a different focus in terms of aspiration, the focus of the groups was on the whole of Lochville. The project research officer therefore used a large map of the city to look at existing community assets and then asked the groups to imagine what should be on the map 10 years into the future. The deliberation was designed to identify community transformation located in the wishes of focus group participants. This process generally worked well except for two groups where some participants arrived with a pre-rehearsed list of issues they wished to discuss and resisted the aspirational and future focus. Whilst their frustrations were heard, strategies to address their issues did not emerge from those groups.

Time for additional interviews was limited leading to three with service providers, two with community sector organisations (one family carer and the other a library) and one with people with disability in the City Council’s Disability⁸ Access Committee. Once again, focus was on what the city might look like in a decade. Noticeably, service providers encompassed what they could do from the perspective of their service provision. As one interviewee noted regarding community engagement, ‘I don’t think we play a huge role … at the moment … we have more of a role through advocacy’. The library saw itself as the ‘connective tissue’ between people and spaces, whilst the council’s Access Committee saw themselves as responding to public demand and had a number of contributions to make in seeding and then contributing to a range of council projects. The distinct narratives shared an interest in building community capacity and community inclusion, but in each case, the boundaries set around legitimate action limited what each participant could envisage or do.

The ARG analysed the results of the community consultation, focus groups and interviews over several months and making sense of the findings was an iterative process. More time and deeper consideration of sampling or how to access ‘hard to reach’ groups may have strengthened the data; however, this was not viable within the project time frame. Based on the consultation data, the ARG identified four key priority areas by mid-2018. These were transport, safety, vibrancy/entertainment and access to information. The ARG and project research officer identified 16 groups, services or organisations with particular relevance to each priority area from the ARG asset map with which to consult further about these priority areas, including Police, local businesses, the Traders Association, shopping mall managers, local MPs and religious leaders.

Significantly, in terms of the concept of asset building, there was also a transformation of the original asset map built of the four quadrants, people, environment, places and groups. The ARG used the map to explore the question, ‘what assets have space’ through which consultation priority areas could be addressed?

The ARG work load and complexity of tasks also increased during this period of analysis, priority setting and further consultation. ARG members’ skills were now being recognised and some were being invited to other council initiatives. However, fateful decisions made during this period where to have implications for the project’s future. By focusing on building stronger communities designed for all, the direct link with the partner disability service provider’s community capacity building team was less clear. A workshop with the disability service provider in July 2018 sought to explore the link back into the everyday work of the team and the NDIS ILC, but it was a stretch to see how our emergent and community-based project model would align more closely with a service model, particularly given the limits of this model during this period of change and uncertainty in the disability sector.

Co-design, connecting, mobilising and growing assets – Action research cycle 3

In this section, we describe the different trajectories of the two key initiatives the ARG chose to develop, these being the safety and vibrancy of the city’s bus mall area, and the accessible information project. The decision to prioritise these areas reflected consultation findings under headings, ‘a safer Lochville’ together with ‘a more vibrant Lochville’ and, secondly, a ‘more informed Lochville’. Assets available were a second consideration leading to a focus on the bus mall (where council-sponsored changes around safety and vibrancy were already a recognised issue) and a focus on information via a ‘welcome tour’ (walking tour) around Lochville led by people with disability. The ‘welcome tour’ was identified as an achievable idea for the group to prototype, organise and trial. The third criterion guiding the ARG’s decision making was the prospect of delivering prototypes within the project timeframe. A further consideration was that issues regarding transport were significantly beyond the scope of this group and more appropriately being attended to by state transport authorities.

Work in both priority areas began with great energy and were progressed through various participatory research methods, including a series of co-design workshops, further community consultation, transect walks⁹ and collaborations with external experts such as with an architect and public art company. Particular challenges arose, however, in the move from consultation to action. The following account focuses primarily on the dynamics of power, recognition and authority in participatory and place-based action research during these later phases and the impact of these dynamics on process and outcomes.

A safer and more vibrant city

Addressing the community priority regarding a safer and more vibrant city was close to the ARG members’ interests. Based on council discussion about the redevelopment of the central bus mall and the adjoining gardens, ARG members ‘hung out’ in the space at different times to explore options around safety and vibrancy, and after consultation with a co-design expert, two co-design workshops were run. The group developed a model for revitalising the bus mall area using colourful and tactile materials on a large map of the area. They produced a design of objects, activities and spaces they felt would contribute to vibrancy, more diverse purpose, and critically, an overarching sense of belonging.

During the workshops the group discussed the need for installations that were interesting to ‘touch and feel’, the need for more colour and art, for spaces for both engagement and quiet, lighting for safety, trees and plants for shade and softening and spaces for entertainment and shelter. Underutilised buildings in the mall area, such as a church and historic building, were repurposed in the design to draw new groups into this public space.

The workshops and broader consultations took time, energy and the patience of all involved but were ultimately a valuable and empowering method of building on diverse views in a trusting environment. Importantly, the design process of working creatively and iteratively with materials over several sessions supported those in the group with cognitive impairments whose participation may have been more limited in abstract conceptual discussions. ARG members frequently commented on the experience of feeling safe and listened to as well as the benefits of learning from others through a creative process.

A consistent narrative throughout this phase was the ambition of making the area a ‘better place’ for all members of the community. There were thoughtful social justice-oriented discussions about ownership, belonging and diversity and how the space in question could transform to promote these experiences for diverse cohorts such as for youth, the aged and the disenfranchised. Whilst disability was never at the centre of discussions, the experience of disability was central. Members stressed that their lived experience of disability and associated everyday exclusions were critical to their insights on what might make the city a ‘better place’ for all. Members conceptualised their lived experience of disability as a unique resource that they, as active citizens, could use as change agents to support diversity and inclusion. One ARG participant explained it as ‘valuing my disability as expertise now more than before’.

A key milestone for the group during the prototyping development was working with a local architect to further develop and present their vision for the bus mall at a local council Safer Communities committee meeting. The presentation was important, as it contributed to the council’s existing thinking around community space revitalisation and safety and the committee was keen to hear the group’s ideas. The group’s design gave council access to the ARG’s insights and to a rich and diverse community voice it would have otherwise struggled to access in their community interface and through existing mechanisms such as the Access Committee. This was also the first time most in the ARG had presented in such a formal governance environment or been exposed at such a close range to its procedures and power dynamics.

This both challenged and empowered different group members in different ways. Whilst being invited to key decision-making groups their voice became one of many and they were asked to provide further information, i.e. to work to the agenda set by the relevant committees. Sitting in such groups also took a great deal of confidence and a lot of support. The project research officer described the experience as a ‘dash of cold water’ after the ‘empowering incubator’ the group had enjoyed over the first months of the project where energy and time were devoted to forming, mapping and consultation.

Working with external professionals, such as an artist and architect, extended their conceptualisation and project development but also represented a little more ‘handing over’ of the vision the group had developed and ‘owned’. Similarly, co-branding by the architect and public artist¹⁰ of the co-design work presented to council symbolised positive partnerships but also a weakening of the group’s identity and boundaries. These were critical learnings with the group later reflecting that in order to influence change, it would be important to prepare for barriers and resistance and learn how to negotiate formal power structures. Similarly, the project research officer noted that as the scale and the complexity of the project increased, the potential limits of this type of participatory decision-making were emerging.

Whilst collaborations and partnerships are required for diversity and sustainability, they also inevitably introduce new agendas that may be set and controlled by others. This dynamic was to become central to the fate of the bus mall prototype and other anticipated outcomes. The funds initially earmarked for safety and vibrancy work were diverted to develop the church space adjoining the bus mall for community groups in a four-month trial, thus effectively removing an important resource opportunity. And whilst a new opportunity arose in November with the announcement of a $100,000 AU bus mall Arts Council tender, the tender criteria deviated from the original prototype focus. Collaboration with the local community art group was essential, as the tender was limited to organisations that had an Australian Business Number and were formally constituted; however, when they withdrew, it was too late for the ARG to repartner and organise another bid. The local council ally sought to explore how the expertise of the ARG might be used in the successful bid; however, overall, this experience was another setback for the group, a setback produced by external actors and events beyond their control. Consequently, further development of this prototype did not progress.

The welcome tour

The second priority area focused on examining more accessible and vibrant ways of providing information about events and resources in the city and once again, co-design principles were employed through meetings, workshops and transect walks. The ‘prototype’ in this case was an information tour the ARG named the ‘welcome tour’. This initiative aimed to lead different groups of people on a walking tour through the city to provide ‘warm’ introductions to sites of information, and interest such as the library or a local MP’s office. The tour ‘leader’ would be a person with disability, in this case one of the ARG members, and stories would be told about places and spaces included in the walk. The group felt that this approach would serve a range of communication and social needs, including for those new to the community, those with poor literacy, those without access to a computer or smart phone, those who were marginalised and socially isolated or who lacked the confidence to explore their community. It was also envisaged that the welcome tour would be a resource for those in referral roles such as Local Area Co-ordinators. A key feature of the tour was that it would be ultimately led by people with disabilities in paid roles.

Once again, the Asset Map was used and further developed through the transect walks. Routes for the pilot tour were discussed and plans developed to film the tour. A filmmaker was also employed to interview the ARG members about their experience. Action research cycle 4 which tested this prototype featured only one trial tour due to time and resource limitations (i.e. the funding period was coming to a close). The tour attracted a small group of interested people and received constructive feedback about its potential with key benefits being local community ownership and the human, interactive and place-based nature of the initiative. For example, the trial tour visited a local MP’s office, and for most in the tour, this was the first time they had entered such a place or understood this was a public resource which they could use. The City Council has since advised of the possibility of running another welcome tour in the near future. However, a key challenge with the trial was the lack of broader community interest, despite extensive advertising throughout the community, including the service sector.

Discussion

Recruited to embody locality through their identity and motivations, the ARG members, with support from the project research officer, adopted a consultation process as the basis for attracting recognition and legitimacy of their activities and activism. Building on the authors’ earlier knowledge review of community capacity building approaches in relation to people with disabilities, a place-based participatory action research methodology was used as a framework which left space for the ARG to design their own approaches through a series of action research cycles.

Organised around the views of a wider community as well as people with disability, the consultation process adopted by the ARG was designed to strengthen this regional city’s community to support diversity. But in adopting this wider approach, links to the NDIS ILC and service-oriented approaches to disability inclusion may have weakened. This was exacerbated by the constraints under which disability services appeared to be operating in relation to deviating from their perceived roles and activities outlined in individually funded NDIS plans. This sometimes meant that people could not be supported to participate in project activities such as public consultations.

In the first three action research cycles over just 18 months, the ARG had successfully established group identity, undertaken a consultation (adopting wide ranging methodologies) and developed prototypes. These phases were designed to establish a legitimate voice, a legitimate approach and to create solutions that were seen as well founded and contributing to strengthening place and community capacity. With the support of a non-interventionist council partner on the ARG, many of the relationships and activities were autonomous up to this point.

From many perspectives, the prototypes would have been perceived as a ‘strong model’ built on wide community consultation. By looking at community assets, the group was able to unearth huge reservoirs of latent community capacity (Sherwin, 2010) that could have been converted into activity and outcomes. This was a major finding of the project – the Asset or ‘Treasure Map', as the ARG often referred to it, was not only a map of what exists but importantly also a map of the latent untapped opportunity structures into which subsequent community strengthening actions could be developed.

The additional activism of the ARG in relation to community issues increased throughout the project period. This built individual capacity and ultimately led to invitations for many of the ARG members to engage in formal council committees and training delivery, a signal of success for those concerned. Indeed, ARG members found their ‘place’ on many occasions through this project both within the ARG and in other formal roles. However, the attempt to strengthen community by implementing the prototypes was a messier process shaped by the parties involved, the partnerships and authority structures, the group and project’s level of autonomy and liminal positioning, and recognition of organisational status amongst other issues. The efforts at translating the identified community priorities through a co-design process ultimately established two prototypes the implementation of which followed very different pathways.

The Asset Map clearly identified a space for the group’s safety and vibrancy prototype in the council agenda to renovate the bus mall. Co-designing these opportunities was a ‘reflexive, embodied process’ which ‘revealed’ and unlocked the ‘tacit knowledge’ and lived experience of those involved (Prendiville and Akama, 2013: 30). However, the ARG prototype for redevelopment became subject to a range of external challenges including timelines set by council which conflicted with project timelines, and engagement with the council and its formal agenda. This process challenged ARG members as decision making and skill demands became more complex and frequently outside their expertise. Similarly, response to a tender that only very partially reflected their work undermined the legitimacy of their consultation and co-design efforts and, following this, the withdrawal of a partner at a crucial moment in responding to the council arts tender was a further setback.

In short, there was not sufficient legitimacy conferred on the ARG’s work to drive sustainable community change. Systemic processes and competing agendas intercepted and limited, in different ways, the group’s capacity to progress work. It might be argued that the ARG found itself in a liminal space between government, research and community development. This liminality was further accentuated in that without a formal organisational structure the ARG could not apply for funding without a partner organisation, something that has also affected the long-term sustainability of this model. In addition to significant efforts at setting conditions for group autonomy, the project research officer spent much energy patrolling or boundary-riding on external hazards such as unhelpful interlocutors, red tape, inaccessible practices and imposition of alternative governance arrangements.

In relation to location of place, it would be wise to compare this experience with some of the neighbourhood and peer support projects identified in the researchers’ knowledge review of community capacity building. ‘Community sourcing’ in neighbourhoods (Duffy, 2013), Keyring¹¹ with its focus on linking co-tenants to neighbourhoods; and peer-to-peer support groups mentoring each other for community engagement¹² are less likely to be subject to the agendas of larger bureaucracies. In light of the project experiences, Cresswell’s (1996) conceptualisation of place as a ‘container for social power’ is not unproblematic. Power and legitimacy were and remained ongoing constraining dynamics. The liminality we identified in the project, whilst offering a form of freedom, could also be understood as ‘silent positioning’ (Power and Bartlett, 2018a) and ‘place denial’. This raises an issue about how the NDIS or different levels of government might maximise the potential of collective community led action by independent groups and how this work might be better legitimised and supported. There is a need to produce ‘authentic’ new spaces and places for participation in which service workers and bureaucracies are visitors and supporters rather than directors of what takes place (Cornwall, 2008; Eversole, 2012).

Liminality also characterised the ‘welcome tours’. In this, approach time was running out for the project, and partnerships were not able to be developed to support its implementation though many options were considered. Whilst the ongoing support from council champions helped maintain the ARG’s autonomy, working largely independently raised the issue about how to gain recognition, community profile and ‘customers’ for the tours. Questions here relate to whether sustainable business models can or should feature in future community capacity building initiatives and equally, the ways in which government might invest in backbone organisations to facilitate governance and partnerships (Victorian Council of Social Services, 2016).

The City Council recognised and supported the contribution of the ARG. The City Council champion felt the ARG offered local government a new form of access to community voice and an opportunity for community leaders to grow individually and as a collective in change initiatives. However, fashioning the group as a voice (i.e. contributory) also indicated a particular positioning of the ARG’s activity within a wider set of power and authority relations.

Community capacity building is a slow and considered process if it is to reflect authentic participatory values and principles (Fleming et al., 2014; Ife, 2010). GT represents the opportunities but also restrictions of working in a liminal space, as demonstrated by different forms of resistance to the ARG’s attempts to define and redefine their expertise and embodiment of place through action. To accomplish this, the project research officer needed to support a safe and dynamic working space and culture for and with the co-researchers whilst at the same time ensuring enough challenge for growth. The boundaries of this space were being constantly managed, and responsibility for this labour-intensive interface work and strategic engagement with the community fell to the project research officer. The role required wearing many hats from the micro level as individual ‘case manager’, coach and motivator, to strategic community and government liaison roles whilst concurrently juggling the everyday logistics of project management. The emotional labour required to support the ‘micro dynamics of participation’ (Light and Akama, 2012) was significant and became more intense over the course of the project, compounded by the isolation of the role. Emotional costs associated with work of this nature are constant and pervasive. In addition to implications for how community development initiatives are structurally supported, our experience also has important implications for how those in community development roles are supported in their everyday practice including access to mentors and communities of practice.

Conclusions

This research project engaged at the intersection of participatory action research and strengths-based community development adopting co-design approaches to create new ways of promoting diversity and inclusion. Our research question explored the extent to which a strengths-based community capacity building approach led by people with disability could develop prototypes which build stronger communities designed to support diverse needs. Our research also explored how this participatory citizenship approach might operate in the NDIS environment, a neoliberal funding and services context characterised by individualised funding, market principles and a social insurance approach.

Our experience builds on the existing literature exploring the ways in which power, authority, relationships and context shape collaborative approaches with people with disability (e.g. Fleming et al., 2014) and extends our understanding of the dynamics which enable or limit place-based and citizen-led efforts in the contemporary context. Our experience raises key questions about the complex boundary work of community development, about the investment and practices required to mobilise individual and community strengths, and more broadly about the conditions required to ensure the voice of people with disability as citizens are central to change.

This project also offers key insights into the challenges of developing collective voice and cross-sectoral partnership within the limits of the personalisation agenda and a competitive services market. There are clearly conflicting values and operating imperatives which remain unresolved. It seems that despite disability policy aspirations toward inclusion, real innovation which can be led by people with disabilities as citizen change makers beyond the service paradigm, has yet to find its ‘place’. The conditions required for people with disability to move from consultation to real influence exist in citizenship opportunities which challenge established service and governance paradigms. There are clear implications for new ways of thinking about how government, the human and social services sector and civil society can collaborate to support place-based community innovation and build on diverse lived experience whilst also leaving enough space for autonomy, creativity and agility.

Footnotes

Acknowledgements

We would like to thank our research partners for their in kind support, and generous and significant collaboration throughout this project. We would like to sincerely thank our ARG members for their wonderful work, energy and passion for making the GT city a better place.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: GT was funded by the RMIT University Enabling Capability Platform Opportunity Fund, a research translation fund designed to enable research impact in the community. It also received funding from the organisation funded locally for provision of the NDIS Local Area Co-ordinator services as well as in-kind support from them and from the local council.

ORCID iD

Christina David

Notes

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